Marie Curie Delivering Choice Programme in Partnership With

Marie Curie Delivering Choice Programme in partnership with:

Suffolk Project

Phase 1 Report

‘Understanding the current state of services’

Project Team: Sandy Barron Project Lead Manager, NHS Suffolk Kathy Middleton – Administration Officer, NHS Suffolk

Associated partner: Fiona Knott – Commissioner: Suffolk County

Supported by: Stuart Keeble Senior Public Health Epidemiologist, NHS Suffolk Sarah Slade Information Manager, NHS Suffolk

- 1 - TABLE OF CONTENTS:

Acknowledgements CHAPTER Page No. 1 Executive Summary 5

2 Introduction 11

3 Methodology 13

4 Demographics 15

5 Place of death, primary cause of death and palliative 20 care needed

6 Utilisation of hospital resource – all deaths 31 6.1 Utilisation of hospital resource by diagnostic group 31 6.2 Utilisation of hospital resource – excluding sudden 32 deaths 6.3 Utilisation of hospital resource by diagnostic group 33

7 Patients and Family Carers 35

8 Hospital Care 54 8.1 Ipswich Hospital Trust (IHT) 54 8.2 West Suffolk Hospital Trust (WSH) 80 8.3 Suffolk Mental Health Partnership (SMHP) 112

9 Specialist Palliative Care 117 9.1 St Elizabeth Hospice 117 9.2 St Nicholas Hospice 128

10 Community Services 137 10.1 General Practitioners 137 10.2 Community Nursing 145 10.2.1 Marie Curie Nursing Service 145 10.2.2 Macmillan Service 152 10.2.3 Community Matrons 155 10.2.4 Heart Failure Team 159 10.2.5 Community Chronic Obstruction Pulmonary 162 Disease (COPD) 10.2.6 Community Neurological Services 165 10.2.7 Community Refugee Team (SCRT), Homeless 168 Outreach Project (HOP) 10.2.8 District Nurses 172 10.2.10 The Community Equipment Store 192 10.2.11 Total Care Team (TCT) 196 10.2.12 Rapid Response Team 199

10.3 Social Care 203 10.3.1 Adult and Community Services 203

10.4 Community Hospitals 218

10.5 Care Homes 225

10.6 Prisons 231

- 2 -

11 Ambulance Services 238

12 Voluntary Sector 245 12.1 Suffolk Cruse Bereavement Care 245 12.2 Crossroads Care West Suffolk 245 Crossroads Care South East Suffolk 12.3 Suffolk Family Carers 246 12.4 Age UK 247 12.7 Sue Ryder 249 12.9 Red Cross 249 12.10 Optua 250

13 Out of Hours 255 13.1 Harmoni 255 13.2 Bildeston 259

14 High level issues/recommendations 260

15 Annex 1 -13 291 16 Glossary of Terms 355

- 3 - Acknowledgements

We would like to thank the members of the Project Executive Board and Stakeholder Steering Committee of the project who have provided such good support for the project team.

Within the community, the community palliative care team, the district nurse teams, community matrons, GPs, care homes, social workers and ambulance service staff have provided a significant amount of information and helped coordinate our efforts. Within the hospitals, the members of the palliative care team and hospital staff provided information and opportunities for direct observation. The staff of the St Elizabeth Hospice, St Nicholas Hospice Care provided us with a great insight into their services, as did the local Marie Curie Nursing Service, and other voluntary sector organisations.

Thanks also to the ‘towards the best together’ End of Life Care Clinical Programme Board for its support and sponsorship of the project as part of the East of England Marie Curie Delivering Choice Programme.

We would also like to thank the National Marie Curie Delivering choice Programme Team for their expert consultancy advice and support to the Suffolk Project Team.

Finally, we would like to particularly thank those who provided us the opportunity to speak to patients and carers receiving services. We would like to thank the patients and carers for allowing us into their lives at this time.

- 4 - 1. Executive Summary “Together, we will develop and help provide the best possible service for palliative care patients allowing them to be cared for in the place of their choice.” Introduction and Background

Marie Curie Cancer Care initiated the Marie Curie Delivering Choice Programme in order to see better planning, choice and coordination of high quality palliative care to patients. The NHS Suffolk programme is a collaboration of health, social care and organisations across the county which aims to make significant improvements in palliative and end of life care. Marie Curie Cancer Care have developed a toolkit which enables commissioners to work in partnership with stakeholders to better understand local palliative and end of life provision. The programme has a clear process of: 1. Whole system analysis 2. Planning and development of service including costing new and revised provision 3. Commissioning and procurement 4. Establishing an evaluation process to demonstrate outcomes

The process was established to respond to unmet need, but could include decommissioning as well as procuring new and/or redesigned provision.

In addition, the Delivering Choice Programme interlinks and compliments a number of current national and local key initiatives including:

• Towards the Best Together, the Clinical Vision for the East of England, 2007 • NHS Next Stage Review: Our NHS, Our Future • Building on the Best (Department of Health 2004), • Supportive and Palliative Care for Adults (NICE 2004), and • The End of Life Care Strategy for England (DH 2008)

Towards the Best Together (2007) sets out the following goals for end of life care: • Deliver world class standards in choice of place of death • Set and monitor core best practice standards for all end of life providers • Create and extend support services for all families and carer’s including bereavement support • Ensure needs assessments and advance care planning for all identified as being in their last year of life • Guarantee better access to supportive and palliative care services, particularly out of hours • Work with the public to raise awareness of end of life issues • Establish palliative care and end of life Board and create end of life care networks

The Marie Curie Delivering Choice Programme will support the delivery of these recognising the goals in Suffolk with outcomes as discussed in the End of Life Strategy for Suffolk (2008) as part of the Marie Curie Programme.

Summary of the report This report describes the findings of phase I of the Suffolk Project. The objective of Phase I is to gain an understanding of the current service, and identify areas for improvement to take forward into Phase II. An extensive information and data gathering exercise was carried out during Phase I. Staff within organisations was encouraged to be open and honest about their experiences and daily challenges. This was made possible by the excellent cooperation and support of all the members of the Project Executive Board, the Stakeholder Steering Committee and their colleagues.

- 5 - This report identifies a number of themes based on the issues highlighted during the Phase I investigation that should be considered to be taken forward in Phase II. There are excellent services and committed professional working within the field of palliative care in Suffolk. The Marie Curie Delivering Choice Programme seeks to build upon these foundations.

Phase I is the investigatory Phase of the project. The purpose of Phase I is to gather evidence and information on barriers that impede provision of care and choice to palliative care patients. Palliative care in Suffolk is provided by a variety of organisations and professional groups, and due to this mixture of providers and groups a very complex system has arisen. During Phase I we examined barriers in providing palliative care in all provider organisations by following the patient pathway, and focusing on the interface and relationships between organisations and professional groups and the needs of patients and their carers. Whilst this summary and the main report focus on areas for improvement, it is very important to recognise that palliative and end of life services in Suffolk, both specialist and nonspecialist, are of a high quality. Stakeholders engaged in Phase I have all demonstrated a strong commitment to providing the best possible care for patients and their carers and have highlighted many examples of existing good practice, as well as taking time to reflect on the scope for improving services. Any improvement taken forward during Phase II and beyond will be building on firm foundations.

Emerging Themes

Several clear themes emerged during Phase I and are highlighted in more depth in the high level issues and suggested improvements. They are:

1. Improving community care • Coordination of care • Flexible and rapid access to care that is responsive to patients and carers changing needs • Continuity of care and integration of services across health, social care and voluntary sector providers • Capacity

2. Improving coordination of services and care • Assessment and care planning • Communication between professionals and carers • Arranging health, social and voluntary care packages and funding • Handover and sharing information • OOH’s

3. Improving Hospital Processes • Admission / Inappropriate admissions • Provision of care within the hospital • Pathways of care across the hospital • Hospital discharge processes

4. Provision of information psychological support and bereavement services for patients, carers and their families • Provision of information • Provision / access to services • Carers assessment • Psychological support • Bereavement support 5. Workforce development and training • General palliative and EOLC skills and knowledge • National EOLC Tools: GSF / PPC / LCP • Preemptive care planning

- 6 - Next Steps The Stakeholder Steering Committee are asked to consider the findings of Phase I, prioritise the areas presented within this report, identifying which should be taken forward into Phase II, and finally recommend the Executive Project Board approve that the project moves to Phase II.

Following this, Phase II of the project will see the creation of working groups comprising, the stakeholder committee together with others who have particular expertise in the area concerned. These groups will prepare costed operational proposals / service specifications for each area for improvement. These proposals will be presented to the Stakeholder Steering Committee and the Executive Board at the end of Phase II for approval and recommendation to move forward into Phase III.

Potential Work streams for Phase II Methodology A large number of issues and ideas for improvement have been presented throughout the report. It is not possible to address all of these as part of the Programme. The Project Team in consultation with the local stakeholders propose that improvements should focus on the following key areas which will address major barriers in different parts of the system thus providing cohesiveness in the whole system. It is envisaged that these will need to be systematically addressed with full stakeholder engagement and resourced to ensure that service models designed in Phase II will be able to improve end of life care during implementation in Phase III of this Programme.

The proposed work streams can be identified as the following:

• Service development of existing services which would lead to an improved level of co ordination and consistency of the patient pathway. (To include consideration of QIPP targets and end of life tools.) • Gaps in current provision which should be addressed by the establishment of new services or an increase in the capacity of an existing service.

Work Stream 1: Improved Community Care

Provision of care within the community is from by a variety of organisations including the NHS, Social Services and organisations from the voluntary and private sector. In some organisations, different teams provide different aspects of care. It is therefore paramount that care is well coordinated so that all professionals understand ‘who is doing what’ and ‘when’, understand the role and expertise of other professionals, record and communicate outcomes consistently and are confident about the standards of care provided.

Patients in Suffolk do receive excellent services either at home or in nursing / residential care homes; however there are a number of areas that require improvements specifically in relation to the coordination of care, increasing the flexibility and responsiveness of services and providing greater continuity of care in order for there to be an equitable service available across the county. In order to support patients in their preferred place of care and death, effective support in times of crisis is essential, in particular improving the communication, coordination of working practices both in and out of hours. The aim of the work stream will be to determine ways in which to achieve a reduction in inappropriate admissions to hospital from both the home and nursing / residential care homes.

We propose a working group to be formed to examine ways of improving the management of care provided to palliative and EOLC patients irrespective of diagnosis that will:

• Promote / ensure coordination of care • Promote / ensure flexible and rapid access to care that is responsive to patients and carers changing needs

- 7 - • Improve continuity of care and integration of services across health, social care and voluntary sector providers; integrate professionals ways of working to ensure access to information, support and advice when appropriate, i.e. symptom management, pre emptive prescribing, access to medication. • Address issues of capacity

Work Stream 2: Improved co-ordination of services and care

Provision of care within the community is from a variety of organisations including the NHS, Social Services and organisations from the voluntary and private sector. The aim of this work stream is to ensure the coordination of services to ensure seamless provision of care and the findings in Phase I highlight the need to improve coordination of care across all these professional groups.

Equally essential is continuity of care and with many professionals caring for patients in the community, it is important that patients and carers feel confident that they are receiving care from a well coordinated team of professionals who communicate with each other and are up to date with the needs of the patient and their carers. Currently there appears to be no key worker for the patients in the community and no one person responsible for achieving a patient’s preferred place of care. In addition, it is unclear as to who is responsible for coordinating support for families and carers after the death of a patient.

Additionally there is limited capacity with OOH services to respond rapidly and equitably to the needs of patients in their home or nursing / residential care home for example requirements such as symptom management or support during the night and this has been highlighted by a variety of stakeholders as a gap in service provision. Out of hours provision should be designed to provide good quality palliative care, end of life care, support and advice which is responsiveness and delivered within a clear service pathway across both primary and secondary care settings. It is paramount that patients have access to medication and symptom control support in crises to prevent the increase in distress and anxiety for patients and their families and to prevent avoidable admissions to hospital. We propose a working group to be formed to examine:

• Deliver and embed improvement of care including the coordination and handover during the day or OOH’s of patient’s admission from and discharge to primary care providers Ensure that the information regarding patients with a palliative and end of life prognosis is standardised and is delivered in a clear and agreed timeframe between acute and community service providers. • Improving and standardising the coordination, communication, assessment processes and information sharing between in hours and out of hours existing services and professionals. • Ensure effective and efficient processes are in place for arranging health, social and voluntary care packages and funding. • Improve processes for accessing information regarding care packages and patient information particularly OOH’s • Improving integration and communication with OOH’s and Specialist Palliative care

Work Stream 3: Improved Hospital /Hospice Processes

It is common for palliative care patients to be admitted to hospital / hospice as their disease progresses and it is important therefore that they are recognised as palliative and treated accordingly. Uncoordinated discharge processes may affect the potential to discharge a patient to their preferred place of care. Stakeholders identified issues related to admission, provision of care and discharge of palliative care patients. We propose a working group be formed to examine four separate processes:

1. Admission / Inappropriate Admission: It is important to enable the improvement and standardisation of systems and processes to ensure that palliative care and end of life

- 8 - patients ,family carers are identified and receive the most appropriate care and support as well as avoiding unnecessary and inappropriate treatment.

2. Provision of care within the hospital: Provision of care within the hospital is undertaken by a variety of staff from different teams and departments. Effective communication underpins good care therefore improving communication between hospital professionals regarding care decisions, planning and treatment is essential.

3. Pathways of care across the hospital: as aforementioned, due to the many professionals involved in care planning in the hospital environment, the knowledge and information relating to a patient care needs and wishes needs to be communicated in order to ensure continuity of care. It is also important that single processes / pathway are used across Suffolk to enable the efficient provision of care and support in the acute setting

4. Hospital discharge processes: In patient discharge for palliative care patients is often complex and time consuming, involving the input of a range of different staff and patients may deteriorate rapidly leaving only a small window of opportunity for a safe and supported discharge. There is a need to develop more standardised processes for arranging packages of care and fasttracking systems to ensure that patients can be discharged in a safe and timely manner as well as identifying a key person/s to lead and communicate progress to both primary and secondary care professionals.

Work Stream 4: Provision of information, psychological support, spiritual and bereavement services for professionals, patients, family carers

Provision of care within the community is provided by a variety of organisations including the NHS, Social Services and organisations from the voluntary and private sector. People should be able to confidently choose to die at home, if this is their preferred place or death, and be offered a good quality, flexible and rapid response services for care at home, when desirable and necessary. It is also important that patients and carers are fully engaged and involved in decisions about care and treatment and given adequate, timely, information to enable them to make informed decisions particularly about hospices or the role of home care workers as is clear from the investigations carried out during this phase that people may have preconceptions about services.

Families are also often unprepared for the symptoms displayed by a patient when they are dying and panic when these symptoms occur. This can result in the patient being admitted to hospital, particularly overnight. It is important that carers are identified and assessed and that services are arranged that meet their needs. Carers may continue to care for their loved one selflessly often putting their own basic needs second and are often at risk of exhaustion, stress and depression.

We propose a working group to be formed to examine:

• Provision of better knowledge of available services to enable better access to professionals / carers when needed • Improving the provision of timely and relevant information • Development and implementation of standardised assessment of carers needs • Improved psychological support • Improved bereavement support

Work Stream 5: Professionals and family carers / end of life care education and training There was a request for palliative and EOLC training from the majority of staff within organisations, either in relation to their own training requirements or the needs of others. The request varied from general training to more enhanced skills such as symptom control and management, decision making required related to moving clinical care from active treatment to palliative care or breaking bad news. We propose a working group to be formed to examine:

- 9 - • Improving general skills and knowledge in relation to palliative and EOLC • Supporting staff to ensure the utilisation of the National EOLC Tools: GSF / PPC / LCP • Supporting staff to ensure the principles of preemptive care planning occurs where possible.

- 10 - 2. Introduction

“Together we will develop and help provide the best possible services for palliative care patients allowing them to be cared for in the place of their choice”

NHS Suffolk and its partners are working together with Marie Curie Cancer Care to implement the Delivering Choice Programme. This programme highlights the benefits of taking a whole system’s approach to the delivery of end of life care. The Local project aims to make improvement of planning, choice and coordination of high quality services and care for patients at end of life. It is anticipated that genuine options, irrespective of diagnosis will reduce occupancy of hospital beds, offer opportunities for cost savings (efficiencies). In providing patients with choice whilst improving the service provision, we would expect to see increases in the number of patients dying at home.

The Local project for Suffolk will achieve three key objectives as set by the Marie Curie Delivering Choice Programme: Marie Curie Cancer Care has initiated the Marie Curie Delivering Choice Programme:

1) Develop patientfocused 24 hour service models that serve local needs and ensure:

• the best possible care for palliative care patients; • improvements in equity of access to services; • appropriate support services for palliative care patients and their carers; • choice in place of care and death is available to all; • information on choice is available and known to all; and • improvements in coordination of care among stakeholders.

2) Evaluate the economic impact to health care services of more patients receiving palliative care at home as compared to hospital.

3) Disseminate findings to other health and social care providers that leads to replication of solutions across the UK.

The programme will benefit:

• patients and their family carers by designing reliable palliative care services that will provide information, support and best possible care in the place of their choice; • health and social care commissioners and providers by providing them with service models based on better resource utilisation; and • health and social care professionals through delivery of more effective ways of working.

The Suffolk Project has three distinct phases.

Table 1 1st Year 1/04/ 2010 - 31/03/ 2011 – Understand 2nd year 1/04/2011 - current state and design new models 31/03/2012 - Implement Ist April - 1st June - 31st 1st November - Ist April onwards 31st May October 31st March

Project set up Phase I Phase II Phase III

- 11 - Phase I report: structure This report presents the findings of Phase I, which comprised pf an extensive data collection and information gathering exercise, incorporating views and information from patients and family carers, frontline staff, and service managers, to understand the palliative and end of life care services that are currently in place, what’s working well, what could be improved, and what the local challenges are in enabling people to be at home at the end of their lives.

At the end of the report, issues are drawn together into proposed work streams that will be developed into operational proposals in Phase II of the project.

It is important to note that this report focuses on identifying areas for improvement, and so does not highlight all the areas of good practice that are already in place. The issues identified within this report will enable the local health and social care community to build on existing good practice.

Partners and stakeholders in the project include:

Table 2:

• Adult Community Services • Bildeston Health Centre

• East England Ambulance • Suffolk Community Health

• Hospice St Nicholas • Suffolk Family Carers

• Hospice St Elizabeth • General Practitioners

• West Suffolk Hospital Trust • Crossroads

• Ipswich Hospital Trust • Cruse

• Suffolk Mental Health Trust • Age Concern

• PCT • Red Cross

• PBC • Sue Ryder

• Primary Care • Independent Sector

• Voluntary / Charity Sector • County Workforce Education Group

• Patient/Public/Family Carers – user • S.H.A. E o.E. groups/minority groups • Macmillan • Marie Curie Nursing Services • Harmoni • Prisons

- 12 - 3. Methodology

The service redesign methodology employed by the Marie Curie Delivering Choice Programme is based on wholesystem thinking. Traditionally, improvements have concentrated on separating individual parts of the system and improving them, often without reference to other improvement initiatives or the complex relationships between the various parts of the system. The programme methodology examines barriers in providing palliative care in all provider organisations by following the patient pathway, focusing on the interface and relationships between organisations and professional groups. The methodology focuses on the needs of patients and their family carers, examines how organisations and professional groups respond to these needs, and redesigns services using the knowledge and expertise of local stakeholders. The whole system comes together in the experience of each individual that uses the system.

The methodology utilised to investigate the whole system provides information about the services provided, demand for these services, current utilisation, barriers in providing care and recommendations for improvements.

The methodology includes analysis of: • Epidemiological data: To identify key epidemiological characteristics of the locality: prevalent diseases, causes of death; and place of death; • Sociodemographic data: To identify key characteristics of the local population: ethnicity; age structure; and deprivation; and • Statistics of current service usage across acute and, where available, community settings

Collection of information on: • Organisational structure of service providers; • Staffing information for service providers, where available, for example, the number and location of nurses in post, team structures, level of training for these staff; • Services offered by each provider, in what location and with what eligibility criteria; and • Processes which govern the delivery of care, and handover between professionals, both in theory and in practice.

Use of service redesign methodologies: the largest piece of work is the identification of barriers to choice and the provision of care in a patient’s preferred setting. This is achieved using a range of methods and tools and examining processes in the majority of organisations providing services to palliative care patients. The investigation is undertaken by following the patient pathway and entails: • process mapping; • shadowing; • interviews; • anonymous questionnaires; • audits; • case studies. • focus groups;

This work relies on obtaining the views of staff, patients, and their family carers, of issues, barriers, what works well in their locality, and asking their opinion of how to improve care.

Identification of areas for improvement

Following the figure below, and based on the findings of the investigation, we can pinpoint areas that need to be improved. These areas are very high level and will be defined in detail during Phase 2 of the project.

- 13 - Figure 1: Sample Patient Journey

- 14 - 4. Demographics

NHS Suffolk population

In 2009 the NHS Suffolk population was estimated to be 596,231. Compared to the UK, NHS Suffolk has a higher proportion of over 50’s and lower proportion of 15 to 39 years olds (See graph 1).

Graph. 1 – Population distribution in NHS Suffolk by age and gender.

% population distribution by age band and gender Source: ONS 2009 mid year population estimate 90+

8084

7074

6064

5054

4044

3034

2024

1014

10% 5% 0% 5% 10%

Females NHSS Males NHSS Males England Females England

Over the next 20 years the NHS Suffolk population is projected to increase by 136,800 people or 20% with the increase differing between age groups. The largest increase in population will be found among the over 65s (see graph 2). By 2030 the number of 75 to 84 year olds is projected to increase by 29,700 (75%), 65 to 74 year olds by 28,600 (47%) and 85+ year olds by 20,400 (125%).

Graph. 2 – NHS Suffolk population projections (2010 to 2030) by age.

Projected increase in population between 2010 and 2030 in NHS Suffolk Source: ONS 2008 mid year projections 35,000 250%

30,000 200% 25,000

20,000 150%

15,000 100% Population % increase % 10,000 50% 5,000

0 0% 04 514 1524 2534 3544 4554 5564 6574 7584 85+ Age band (Years)

Population % increase

- 15 - Urban and rural

Within NHS Suffolk half of the population (330,000) live in urban communities with populations greater than ten thousand, 17% (100,000) live in market towns and 28% (165,000) live in villages, hamlets and isolated dwellings. Among those aged over 65 years 49% live in areas classified as rural with 34,000 (31%) living in villages, hamlets and isolated dwellings and 19,800 (18%) living in market towns. The other 51% (56,200) live in urban areas.

Population characteristics

According to the ACORN segmentation tool, NHS Suffolk contains a higher proportion of wealthy professionals, affluent older people and secure affluent and middle income families living in rural and suburban areas compared to the UK. There are a smaller proportion of single people on low incomes, struggling families in rented accommodation with low incomes, people with blue collar roots and young educated people living in urban areas (See graph 3).

Graph. 3 – Distribution of NHS Suffolk population by Acorn groups.

Wealthy Executives 18% Unclassified Affluent Greys 16% Inner City Adversity 14% Flourishing Families 12% 10% High Rise Hardship Prosperous Professionals 8% 6% 4% Burdened Singles Educated Urbanites 2% 0%

Struggling Families Aspiring Singles

Blue Collar Roots Starting Out

Post Industrial Families Secure Families

Asian Communities Settled Suburbia Prudent Pensioners NHS Suffolk UK

Source: CACI © ACORN 2009

Ethnicity

The most recent estimates of population by ethnic group (ONS 2007) suggest there are 36,000 (6%) people in NHS Suffolk from a black, minority or ethnic background. The largest BME groups within NHS Suffolk are Asian or Asian British 11,500 (1.9%) and people of mixed race 9,800 (1.7%). The percentage of people with a BME background in NHS Suffolk is around half the rate for the UK as illustrated in Figure 4 below. The area with the highest BME population is Ipswich borough (10.7%) where the size of the BME community has almost doubled in the last ten years. Mid Suffolk and Babergh are some of the least diverse areas (See graph 4).

- 16 - Graph. 4 - Percentage distribution of population by ethnic group, residents of England, East of England, Suffolk County and NHS Suffolk, 2007.

Percentage distribution of population by ethnic group Residents of England, East of England, Suffolk County and NHS Suffolk 2007 Persons

100%

95% Other Irish Chinese Bangladeshi 90% Pakistani Indian Black African Black Caribbean White and Mixed White 85%

80% England East of England Suffolk County NHS Suffolk

Marginalised groups in NHS Suffolk

Gypsies and Travellers/Romany

In Suffolk there are a number of authorised Gypsy and Traveler sites, both council owned and privately owned. These are spread across the following districts: • Babergh 1 pitch • Forest Heath 1 privately managed site with 35 pitches and 1 privately owned site with 12 pitches • Ipswich 1 local authority managed site with 41 pitches and 1 private with one pitch • Mid Suffolk 15 private sites with 69 pitches in total • St Edmundsbury 2 private sites with 2 pitches in total • There are no authorised sites in Suffolk Coastal district. Source: Suffolk County Council

The most recent caravan count recorded in January 2010 for NHS Suffolk was 329 and it has been estimated that there are 3,0005,000 gypsies and travellers in the county. However it should be noted that these figures are likely to be underestimated due to the lack of official data and the transient nature of the community.

Homeless Community

The homeless community within Suffolk currently accounts for 6.7% of the population, with Ipswich containing a higher percentage than the whole county.

Family Carers

Carers are one of the largest marginalised communities across Suffolk accounting for 10% of the county’s population (Census, 2001). The growing elderly population is also likely to result in an increasing number of family carers in the future.

- 17 - Prisoners

There are four prisons in NHS Suffolk: • HMP Edmunds Hill (capacity 371) • HMP Highpoint (capacity 944) • HMP&YOI Hollesley Bay (capacity 345) • YOI Warren Hill (capacity 222)

The prison population in NHS Suffolk is entirely male.

Migrant Workers

Suffolk has seen an increase in the number of migrant workers over the past few years. There are now many more communities from different countries living and working in the county. This community only accounts for a very small proportion of the county’s population as a whole but it is important to note that a number of migrant workers are not included in official statistics or projections.

There were 4,980 new National Insurance (NI) registrations in Suffolk County in 2006/07 with a third coming from Poland. Workers from 43 different countries applied for NI numbers during 2007.

Asylum Seekers and Refugees

It is difficult to obtain data for the numbers of asylum seekers and refugees across Suffolk due to immigration status information not being collected by the services this community has contact with.

Disability

The disabled community incorporates individuals with a variety of disabilities including physical, deaf and blind, mental disabilities and learning difficulties.

It is difficult to estimate the number of people in Suffolk with a disability. According to the Annual Population Survey 20072008, 10.2% of people of working age who are economically active are either registered under the disability discrimination act (DDA), have work limiting disability or both

Lesbian, Gay, Bisexual and Transgender (LGBT)

It has been estimated that there are 3.6 million LGBT people residing in the UK, comprising 5% of the total UK population. Although relevant data and statistics for Suffolk are not available on this population, there is no evidence to suggest that the proportion of LGBT people differs from the UK population overall.

Deprivation

The overall level of deprivation in NHS Suffolk is relatively low (PCT ranked 131 out of 152 PCT’s, 1=most deprived). However NHS Suffolk is an area of contrast with eight locations in Ipswich featuring in the 10% most deprived areas in England and twenty three areas throughout the PCT featuring in the top 5% least deprived areas in England.

The most deprived areas in NHS Suffolk are located in Ipswich, Felixstowe, Haverhill, Bury St Edmunds, Saxmundham, Newmarket, Sudbury and Hadleigh (see figure 1). The majority of deprived localities are urban in nature however there are smaller pockets of rural deprivation which are diluted and hidden by surrounding affluence. Rural areas which have been identified as having higher levels of deprivation include:

• East of the village of Barningham, near Stanton in St. Edmundsbury, • In the estate around Seaward Avenue in the small town of Leiston in Suffolk Coastal,

- 18 - • The village of Peasenhall in Mid Suffolk (including the Mount Pleasant housing area) • The area to the north of Upthorpe, containing a predominantly retired community • Ampton and Timworth: Rural OA containing the hamlets of Ampton and Timworth and a number of isolated settlements to the north of Bury St Edmunds

Map: 1 – Deprivation (IMD 2007) in NHS Suffolk by LSOA.

- 19 - 5. Place of death, primary cause of death and palliative care need

The annual incidence of deaths is the single most important indicator of palliative care need in a population, as most palliative care need arises in the last year of life (Tebbit 2004). Combined mortality and secondary user data (SUS) were provided by the NHS Suffolk. Mortality data was examined for the calendar years 2007, 2008 and 2009. The data shows that on average there were 5626 deaths each year in NHS Suffolk between 2007 and 2009 (Table 1).

Table 1: – Deaths in NHS Suffolk residents per year

Number of Year deaths 2007 5525 2008 5726 2009 5626 Total 16877

Between 2007 and 2009 the primary underlying cause of death in NHS Suffolk was cardiovascular disease (Stroke and Coronary Heart disease) which accounted for 36% of all deaths followed by cancer (28%) and other causes of death (20%). The proportion of deaths for each cause did not differ significantly by year between 2007 and 2009 (See table 2).

Table 2 - Number of deaths per year by underlying cause

Underlying cause of Death 2007 2008 2009 2007 - 2009 No. % No. % No. % No % Cancer Neoplasms 1612 29% 1542 27% 1538 27% 4692 28% Circulatory Disease 1982 36% 2088 36% 2027 36% 6097 36% Disease of the Nervous system 238 4% 271 5% 275 5% 784 5% Respiratory Disease 634 11% 665 12% 651 12% 1950 12% Other 1059 19% 1160 20% 1135 20% 3354 20% Total 5525 100% 5726 100% 5626 100% 16877 100%

Analysis of mortality data by place of death showed that the largest proportion of deaths occurred in hospital (49%) followed by home (22%) and care homes (21%). The number of deaths occurring in each of these locations did not change significantly between 2007 and 2009 (See table 3).

Table 3 – Number of deaths per year by place of death

Place of Death 2007 2008 2009 2007 - 2009 No. % No. % No. % No % Care home 1059 19% 1259 22% 1236 22% 3554 21% Elsewhere 107 2% 114 2% 93 2% 314 2% Home 1179 21% 1264 22% 1251 22% 3694 22% Hospice 357 6% 297 5% 327 6% 981 6% Hospital 2801 51% 2767 48% 2682 48% 8250 49% Other 22 0% 25 0% 37 1% 84 0% Grand Total 5525 100% 5726 100% 5626 100% 16877 100%

In comparison to England there was a larger proportion of deaths at home in NHS Suffolk (21% vs. 19.1%), a smaller proportion of deaths in hospital (49% vs. 58.4%) and a higher proportion of

- 20 - deaths in care homes (21% vs. 15.6%). Please note the comparison year do not match as the England data is only available for 200507 (See table 4).

Table 4 – Proportion of deaths by place of death in England (2005-07)

Place of death % of deaths Care home 15.6% Elsewhere 2.0% Home 19.1% Hospice 5.0% Hospital 58.4%

Place of death data was analysed by primary underlying cause of death (See table 5 & graph 5). The data shows that 51.4% of deaths from disease of the nervous system occurred in a care home, this was significantly higher than any other underlying cause of death. Patients with cancer and circulatory disease had significantly higher proportions of deaths at home (25.6% and 26.2%) compared to any other cause of death. Patients with respiratory disease and disease of the nervous system had the lowest proportion of deaths at home (15.3% & 13.6%). The highest proportion of deaths in hospital was seen among patients with respiratory disease (57.9%) and circulatory disease. The data suggests that deaths in hospices were mainly associated with cancer (924 deaths) compared to all other causes (57 deaths).

Graph. 5 - Proportion of deaths in NHS Suffolk by place of death and underlying cause.

Proportion of deaths in NHS Suffolk by place of death and underlying cause. All deaths between 2007-2009 70% Source: ONS

60%

50%

40%

30% % of% deaths 20%

10%

0% Care home Elsewhere Home Hospice Hospital Other Place of death

Cancer Neoplasms Cardiovascular disease Disease of the Nervous system Respiratory Disease Other

Table 5 – Number of deaths per year by place of death and underlying cause

Cause of Place of 2007- Death death 2007 % 2008 % 2009 % 2009 % Cancer Care home 165 10.2% 185 12.0% 201 13.1% 551 11.7% Elsewhere 13 0.8% 19 1.2% 10 0.7% 42 0.9% Home 381 23.6% 395 25.6% 423 27.5% 1199 25.6% Hospice 338 21.0% 280 18.2% 306 19.9% 924 19.7%

- 21 - Hospital 714 44.3% 659 42.7% 594 38.6% 1967 41.9% Other 1 0.1% 4 0.3% 4 0.3% 9 0.2% Total 1612 100.0% 1542 100.0% 1538 100.0% 4692 100.0% Circulatory Disease Care home 366 18.5% 403 19.3% 407 20.1% 1176 19.3% Elsewhere 39 2.0% 41 2.0% 43 2.1% 123 2.0% Home 509 25.7% 571 27.3% 519 25.6% 1599 26.2% Hospice 10 0.5% 7 0.3% 5 0.2% 22 0.4% Hospital 1054 53.2% 1062 50.9% 1040 51.3% 3156 51.8% Other 4 0.2% 4 0.2% 13 0.6% 21 0.3% Total 1982 100.0% 2088 100.0% 2027 100.0% 6097 100.0% Disease of the Nervous system Care home 121 50.8% 151 55.7% 152 55.3% 424 54.1% Elsewhere 0.0% 0.0% 4 1.5% 4 0.5% Home 29 12.2% 40 14.8% 38 13.8% 107 13.6% Hospice 4 1.7% 3 1.1% 5 1.8% 12 1.5% Hospital 82 34.5% 72 26.6% 74 26.9% 228 29.1% Other 2 0.8% 5 1.8% 2 0.7% 9 1.1% Total 238 100.0% 271 100.0% 275 100.0% 784 100.0% Respiratory Disease Care home 145 22.9% 188 28.3% 161 24.7% 494 25.3% Elsewhere 1 0.2% 3 0.5% 1 0.2% 5 0.3% Home 107 16.9% 100 15.0% 92 14.1% 299 15.3% Hospice 2 0.3% 2 0.3% 5 0.8% 9 0.5% Hospital 373 58.8% 367 55.2% 390 59.9% 1130 57.9% Other 6 0.9% 5 0.8% 2 0.3% 13 0.7% Total 634 100.0% 665 100.0% 651 100.0% 1950 100.0% Other Care home 262 24.7% 332 28.6% 315 27.8% 909 27.1% Elsewhere 54 5.1% 51 4.4% 35 3.1% 140 4.2% Home 153 14.4% 158 13.6% 179 15.8% 490 14.6% Hospice 3 0.3% 5 0.4% 6 0.5% 14 0.4% Hospital 578 54.6% 607 52.3% 584 51.5% 1769 52.7% Other 9 0.8% 7 0.6% 16 1.4% 32 1.0% Total 1059 100.0% 1160 100.0% 1135 100.0% 3354 100.0%

As already established above 49% (8250) of all deaths (20072009) occurred in hospital. The majority of these deaths occurred in Ipswich hospital (4320) and West Suffolk Hospital (2521). Of the 6% (981) of deaths in hospices the majority occurred at St Elizabeth (606) and St Nicholas (348) hospices (See table 6)

Table 6 – Number of deaths per year by place of death

Place of death Year 2007 2008 2009 Total No. % No. % No. % No Arthur Rank House Brookfields Hospital Site 1 0.3% 0 0.0% 2 0.6% 3 Cynthia Spencer House 0 0.0% 1 0.3% 0 0.0% 1 East Anglias Children Hospice 0 0.0% 1 0.3% 3 0.9% 4 Ellenor Lions Hospices 1 0.3% 0 0.0% 0 0.0% 1 Farleigh Hospice 1 0.3% 0 0.0% 0 0.0% 1 Mount Edgecombe Hospice 0 0.0% 0 0.0% 1 0.3% 1 Priscilla Bacon Lodge Colman 0.0% 2 0.7% 1 0.3% 3

- 22 - Hospital St Elizabeth Hospice 207 58.0% 189 63.6% 210 64.2% 606 St Helena Hospice 4 1.1% 2 0.7% 6 1.8% 12 St Josephs Hospice 0 0.0% 1 0.3% 0 0.0% 1 St Nicholas Hospice 143 40.1% 101 34.0% 104 31.8% 348 Hospice Total 357 6.5% 297 5.2% 327 5.8% 981 Addenbrookes Hospital 185 6.6% 168 6.1% 175 6.5% 528 Aldeburgh Hospital 52 1.9% 45 1.6% 20 0.7% 117 Colchester General Hospital 37 1.3% 44 1.6% 35 1.3% 116 Ipswich Hospital NHS Trust 1445 51.6% 1443 52.2% 1432 53.4% 4320 James Paget Hospital 12 0.4% 12 0.4% 12 0.4% 36 Norfolk and Norwich University Hospital 34 1.2% 29 1.0% 31 1.2% 94 Papworth Hospital 22 0.8% 27 1.0% 28 1.0% 77 Risby Park Nursing Home 17 0.6% 18 0.7% 23 0.9% 58 Walnuttree Hospital 31 1.1% 18 0.7% 22 0.8% 71 West Suffolk Hospital 858 30.6% 846 30.6% 817 30.5% 2521 Other Hospital 108 3.9% 117 4.2% 87 3.2% 312 Hospital Total 2801 50.7% 2767 48.3% 2682 47.7% 8250 Other 22 0.4% 25 0.4% 37 0.7% 84 Care home 1059 19.2% 1259 22.0% 1236 22.0% 3554 Elsewhere 107 1.9% 114 2.0% 93 1.7% 314 Home 1179 21.3% 1264 22.1% 1251 22.2% 3694 Total 5525 100.00% 5726 100.00% 5626 100.00% 16877

Palliative Care Need

The demand for palliative care services can be estimated in several ways. Tebbit (2004)1, suggest that the annual incidence of deaths is the single most important indicator of palliative care need in a population since most palliative care need arises during the last year of life. The number of patients with palliative care needs can be calculated using the following formula described by Higginson (2001)2

Number needing palliative care = all cancer deaths plus 67% of all other deaths

Based on this formula and mortality data from 2007 to 2009 the estimated average number of patients needing palliative care in NHS Suffolk each year was 4285 (See table 7).

Table 7 Need for palliative care based on number of deaths

Patients in need of palliative care Year Cancer Other Total 2007 1612 2622 4234 2008 1542 2803 4345 2009 1538 2739 4277

Although the formula used above can indicate how many people may have been in need of palliative care, it does not identify how much care or the type of care than may have been required.

Death at home by deprivation quintile

1 Tebbit P (2004) Population based needs assessment for palliative care: A manual for cancer networks 2 Higginson, I 2001 The palliative Care for Londoners: Needs, Experience, Outcomes and Future Strategy. NHS Executive London Region.

- 23 - Inequalities in health outcomes exist due to wider social determinants and individuals’ ability to access services. To assess if there were inequalities in the access to end of life care, the proportion of deaths at home were analysed by deprivation quintile (Based on the index of multiple deprivation 2007). The analysis found there was no difference in the proportion of people dying at home between the least and most deprived areas in NHS Suffolk (See graph 6).

Graph 6 – Number of deaths of NHS Suffolk residents at home by deprivation quintile.

Deaths at home by deprivation quintile Deaths in NHS Suffolk between 2007 & 2009 Source: ONS and NHS Suffolk

% of deaths of % 10

0 1 Least deprived 2 3 4 5 Most deprived Deprivation quintile (5 = most deprived)

200709 2009 NHS Suffolk Average

Deaths at home by local authority district

Graph 7 shows the proportion of patients dying at home (20072009) by local authority district in NHS Suffolk. The analysis demonstrates that between 2007 and 2009 there was a significantly lower proportion of deaths at home in Ipswich borough (19.8 %) compared to NHS Suffolk (21.9%). However the number of deaths at home in Ipswich did increase in 2009 to the NHS Suffolk average (See graph 8). In Mid Suffolk there was significantly higher proportion of deaths at home (24.9%) compared to NHS Suffolk.

- 24 - Graph. 7 - Number of deaths of NHS Suffolk residents at home by local authority district.

Deaths at home by local authority district Deaths in NHS Suffolk between 2007 & 2009 Source: ONS and NHS Suffolk

15 % of deaths of % 10

0 Babergh Forest Heath Ipswich Mid Suffolk St Edmundsbury Suffolk Coastal

200709 NHS Suffolk Average

Graph 8. – Number of deaths among NHS Suffolk residents at home by local authority district and year of death.

Deaths at home by year and local authority district Deaths between 2007 & 2009 in NHS Suffolk Source: ONS and NHS Suffolk

30%

25%

20%

15% % of deaths % of deaths 10%

0% Babergh Forest Heath Ipswich Mid Suffolk St Edmundsbury Suffolk Coastal

2007 2008 2009 NHS Suffolk Average NHS Suffolk Average NHS Suffolk Average

Secondary analysis

The analysis above includes deaths among persons of all ages, for all underlying causes of death including deaths not amenable to end of life care e.g. suicide, accidents, and sudden deaths. To ensure sudden deaths did not skew the above findings secondary analysis was undertaken where all sudden deaths and deaths among those under19 years of age (The project does not include children’s hospices) were removed.

A list of ICD 10 codes for all underlying causes of death were extracted from the 20072009 death data. An abridged version of the Delphi method was utilised to identify potential exclusions. Four

- 25 - members of staff with previous clinical experience identified underlying causes of death which could be classified as sudden. Individual responses were amalgamated and causes of death were excluded from the analysis where agreement was found among three out of the four clinicians. A list of ICD 10 codes excluded from the secondary analysis can be seen in appendix 1.

The exclusion of sudden deaths led to 2780 deaths being removed from analysis, leaving 14,097 deaths over the three years (See table 8).

Table 8 – Deaths (Excluding sudden deaths) among NHS Suffolk residents

Year Total 2007 4568 2008 4780 2009 4749 Total 14097

The analysis found that the main underlying cause of death was cancer (33.2%) followed by cardiovascular disease (29.5%) and other (16.4%) (See table 9).

Table 9 - Number of deaths per year by underlying cause (Excluding sudden deaths)

Underlying cause of 2007 2008 2009 Total death No % No % No % No % Cancer 1609 35.2% 1535 32.1% 1536 32.3% 4680 33.2% Cardiovascular disease 1346 29.5% 1449 30.3% 1442 30.4% 4237 30.1% Disease of respiratory system 626 13.7% 653 13.7% 636 13.4% 1915 13.6% Diseases of nervous system 237 5.2% 269 5.6% 271 5.7% 777 5.5% Other 750 16.4% 874 18.3% 864 18.2% 2488 17.6% Total 4568 100% 4780 100% 4749 100% 14097 100%

In comparison to the full death data set there was a reduction in the number of cardiovascular deaths (heart attacks) and deaths from other causes (suicide, accidents).

The removal of sudden deaths from the analysis meant the proportion of deaths in care homes (24% vs. 21%) was higher and the proportion of deaths in hospitals smaller (47% vs. 49%. The overall proportion of deaths at home between 2007 and 2009 decreased by 1% to 21% (see table 10). These changes were most acute among deaths from circulatory disease and other causes (see graph 9 and table 11)

Table 10 – Number of deaths per year by place of death (Excluding sudden deaths)

Place of Death 2007 2008 2009 2007 - 2009 No. % No. % No. % No % Care home 977 21% 1192 25% 1170 25% 3339 24% Elsewhere 44 1% 56 1% 45 1% 145 1% Home 952 21% 1006 21% 1030 22% 2988 21% Hospice 356 8% 295 6% 324 7% 975 7% Hospital 2218 49% 2208 46% 2150 45% 6576 47% Other 21 0% 23 0% 30 1% 74 1% Grand Total 4568 100% 4780 100% 4749 100% 14097 100%

- 26 - Graph 9. - Proportion of deaths in NHS Suffolk by place of death and underlying cause (excluding sudden death).

Proportion of deaths in NHS Suffolk by place of death and underlying cause. All deaths between 2007-2009 70% Source: ONS

60%

50%

40%

30% % of% deaths 20%

10%

0% Care home Elsewhere Home Hospice Hospital Other Place of death

Cancer Cardiovascular disease Disease of the Nervous system Respiratory Disease Other

- 27 - Table 11 – Number of deaths per year by underlying cause and place of death (Excluding sudden deaths)

Cause of Place of 2007- Death death 2007 % 2008 % 2009 % 2009 % Cancer Care home 165 10.3% 185 12.1% 201 13.1% 551 11.8% Elsewhere 13 0.8% 19 1.2% 10 0.7% 42 0.9% Home 380 23.6% 391 25.5% 421 27.4% 1192 25.5% Hospice 338 21.0% 279 18.2% 306 19.9% 923 19.7% Hospital 712 44.3% 657 42.8% 594 38.7% 1963 41.9% Other 1 0.1% 4 0.3% 4 0.3% 9 0.2% Total 1609 100.0% 1535 100.0% 1536 100.0% 4680 100.0% Cardiovascular disease Care home 307 22.8% 359 24.8% 359 24.9% 1025 24.2% Elsewhere 26 1.9% 28 1.9% 27 1.9% 81 1.9% Home 332 24.7% 379 26.2% 364 25.2% 1075 25.4% Hospice 10 0.7% 7 0.5% 5 0.3% 22 0.5% Hospital 667 49.6% 672 46.4% 678 47.0% 2017 47.6% Other 4 0.3% 4 0.3% 9 0.6% 17 0.4% Total 1346 100.0% 1449 100.0% 1442 100.0% 4237 100.0% Disease of the Nervous system Care home 121 51.1% 151 56.1% 152 56.1% 424 54.6% Elsewhere 0.0% 0.0% 4 1.5% 4 0.5% Home 29 12.2% 39 14.5% 37 13.7% 105 13.5% Hospice 4 1.7% 3 1.1% 5 1.8% 12 1.5% Hospital 81 34.2% 71 26.4% 71 26.2% 223 28.7% Other 2 0.8% 5 1.9% 2 0.7% 9 1.2% Total 237 100.0% 269 100.0% 271 100.0% 777 100.0% Respiratory Disease Care home 143 22.8% 186 28.5% 159 25.0% 488 25.5% Elsewhere 1 0.2% 3 0.5% 1 0.2% 5 0.3% Home 105 16.8% 97 14.9% 90 14.2% 292 15.2% Hospice 2 0.3% 2 0.3% 4 0.6% 8 0.4% Hospital 369 58.9% 360 55.1% 380 59.7% 1109 57.9% Other 6 1.0% 5 0.8% 2 0.3% 13 0.7% Total 626 100.0% 653 100.0% 636 100.0% 1915 100.0% Other Care home 241 32.1% 311 35.6% 299 34.6% 851 34.2% Elsewhere 4 0.5% 6 0.7% 3 0.3% 13 0.5% Home 106 14.1% 100 11.4% 118 13.7% 324 13.0% Hospice 2 0.3% 4 0.5% 4 0.5% 10 0.4% Hospital 389 51.9% 448 51.3% 427 49.4% 1264 50.8% Other 8 1.1% 5 0.6% 13 1.5% 26 1.0% Total 750 100.0% 874 100.0% 864 100.0% 2488 100.0%

The distribution of deaths at home by local authority and deprivation quintile did not change with the removal of sudden deaths and deaths among persons aged less than 19 years (See graph 10 & 11)

- 28 - Graph. 10 - Number of deaths of NHS Suffolk residents at home by local authority district (Excluding sudden deaths).

Deaths at home by local authority district Deaths in NHS Suffolk between 2007 & 2009 Source: ONS and NHS Suffolk

30%

25%

20%

15% % of deaths of % 10%

0% Babergh Forest Heath Ipswich Mid Suffolk St Suffolk Coastal Edmundsbury

200709 NHS Suffolk Average

Graph 11 – Number of deaths of NHS Suffolk residents at home by deprivation quintile (Excluding sudden deaths).

Deaths at home by deprivation quintile Deaths in NHS Suffolk between 2007 & 2009 Source: ONS and NHS Suffolk

30%

25%

20%

15%

% of deaths of % 10%

0% 1 Least deprived 2 3 4 5 Most deprived Deprivation quintile (5 = most deprived)

200709 2009 NHS Suffolk Average

- 29 - Summary of secondary analysis

In summary the removal of sudden deaths and deaths among persons aged less than 19 years meant the proportion of deaths from cardiovascular disease and other causes reduced. The proportion of deaths in care homes increased the most whilst deaths at home reduced by 1%. The distribution of deaths at home by local authority and deprivation quintile did not change.

- 30 - 6. Utilisation of hospital resource – all deaths

Data was examined to identify the number of elective and emergency admissions, occupied bed days and average length of stay. This data was broken down by activity occurring within the last year of life, the last 6 months of life and the last 8 weeks of life.

For 2009 patients in their last year of life had 8196 emergency admissions, 96% of these occurred within the last 6 months of life and 86% of admissions occurred within the last 8 weeks of life. During the last year of life these patients occupied 104,220 bed days. 96% of the occupancy occurred within the last 6 months of life and 86% occurred within the last 8 weeks of life. The average LoS remains fairly static across the last year of life, 6 months of life and 8 weeks of life although the average length of stay for each of the years examined is dropping when compared to the previous year.

Table 1:

2007 2008 2009 Elective Emergency Elective Emergency Elective Emergency Last year of life Patients 1463 3876 1449 3975 1520 4060 Admissions 5698 7579 5696 7790 5791 8196 Bed Days 8666 106320 7611 102707 7914 104220 Avg LoS 1.52 14.03 1.33 13.18 1.37 12.72 Total Spend £5,545,989 £23,239,373 Last 6 months of life Patients 1352 3657 1337 3703 1387 3787 Admissions 5497 7316 5503 7494 5580 7898 Bed Days 8404 102026 7164 98355 7738 100315 Avg LoS 1.52 13.94 1.3 13.12 1.39 12.70 Total Spend £5,346,832 £22,514,018 Last 8 weeks of life Patients 1124 3238 1103 3228 1132 3313 Admissions 4762 6575 4732 6623 4772 7059 Bed Days 7232 90350 6460 86472 6798 89356 Avg LoS 1.52 13.74 1.36 13.06 1.42 12.66 Total Spend £4,597,754 £20,125,744 Patients who 162 3654 128 3644 145 3718 died on their last admission Bed Days 3692 71825 2098 64556 2930 61000 Avg LoS (per 22.79 19.66 16.39 17.72 20.2 16.4 patient)

6.1 Utilisation of hospital resource by diagnostic group

- 31 - The ratio of elective and emergency admissions was compared for each diagnostic group. Cancer is the only group where the ratio of elective admissions is higher than the emergency ratio. The elective ratio has stayed constant across the 3 years examined. The average length of stay for cancer patients was lower than for other diagnostic groups. All non elective average LoS are lower for each year in comparison to the previous year.

Table 2

Diagnostic 2007 2008 2009 Group Elective Emergency Elective Emergency Elective Emergency Cancer Patients 1612 1542 1538 Admissions 4449 2682 4488 2595 4496 2772 Bed Days 5083 29,644 5174 26,991 4908 27,463 Average LoS 1.14 11.05 1.15 10.40 1.09 9.91 Total Spend £3,754,349 £7,279,803 Heart and Circulatory Patients 1982 2088 2027 Admissions 756 2418 546 2468 595 2502 Bed Days 1451 37,495 924 24,268 1525 34,261 Average LoS 1.92 15.51 1.69 13.88 2.56 13.69 Total Spend £931,806 £7,377,938 Neurology Patients 238 271 275 Admissions 48 226 64 267 48 311 Bed Days 261 4546 87 5274 89 5416 Average LoS 5.44 20.12 1.36 19.75 1.85 17.41 Total Spend £62,227 £1,082,779 Respiratory Patients 634 665 651 Admissions 134 947 157 974 136 1067 Bed Days 428 14,314 315 14,048 234 14,296 Average LoS 3.19 15.12 2.01 14.42 1.72 13.40 Total Spend £206,852 £2,836,036

6.2 Utilisation of hospital resource – excluding sudden deaths

The hospital utilisation was examined for patients that died during the calendar years 2007, 2008 and 2009. Deaths examined excluded those for patients under the age of 19 and those attributable to external causes or sudden death (e.g. heart attack). Costs are only available for hospitals spells ending since 01/04/2008, thus the costs associated with deaths in 2008 appear significantly lower than costs associated with deaths in 2009.

For 2009 patients in their last year of life had 7170 emergency admissions, 96% of these occurred within the last 6 months of life and 85% of admissions occurred within the last 8 weeks of life. During the last year of life these patients occupied 91,358 bed days. 96% of the occupancy occurred within the last 6 months of life and 85% occurred within the last 8 weeks of life. The average LoS remains fairly static across the last year of life, 6 months of life and 8 weeks of life. The nonelective average LoS has dropped for each year in comparison to the previous year although the elective average LoS dropped for 2008 but has risen slightly for 2009.

- 32 - Table 1:

2007 2008 2009 Elective Emergency Elective Emergency Elective Emergency Last yr of life Patients 1317 3260 1280 3375 1363 3500 Admissions 5351 6488 5342 6713 5503 7170 Bed Days 7888 90843 6837 90259 7078 91358 Avg LoS 1.47 14 1.28 13.44 1.29 12.74 Total £5,114,611 £20,114,845 Spend Last 6 mths of life Patients 1223 3077 1181 3140 1248 3267 Admissions 5167 6253 5165 6440 5309 6898 Bed Days 7630 86895 6405 86070 6923 87742 Avg LoS 1.48 13.9 1.24 13.36 1.30 12.72 Total £4,943,418 £19,474,102 Spend Last 8 wks of life Patients 1014 2702 971 2714 1017 2835 Admissions 4452 5593 4437 5659 4535 6128 Bed Days 6556 76353 5797 75156 6105 77829 Avg LoS 1.47 13.65 1.31 13.28 1.35 12.7 Total £4,231,103 £17,302,362 Spend Patients 144 2976 111 2957 113 3056 who died on their last admission Bed Days 3230 60754 1913 53247 2438 51577 Avg LoS 22.43 20.41 17.23 18 21.57 16.88 (per patient)

6.3 Utilisation of hospital resource by diagnostic group

The hospital utilisation was examined for all patients that died during the calendar years 2007, 2008 and 2009. Costs are only available for hospitals spells ending since 01/04/2008, thus the costs associated with deaths in 2008 appear significantly lower than costs associated with deaths in 2009. Admissions occurring within the patients last year of life were examined for each diagnostic group. The ratio of elective and emergency admissions was compared for each diagnostic group. Cancer is the only group where the ratio of elective admissions is higher than the emergency ratio. The elective ratio has stayed constant across the 3 years examined. The average length of stay for cancer patients was lower than for other diagnostic groups. All non elective average LoS are lower for each year in comparison to the previous year.

Table 2:

Diagnostic 2007 2008 2009 Group Elective Emergency Elective Emergency Elective Emergency Cancer Patients 1609 1535 1536 Admissions 4442 2679 4117 2552 4474 2752 Bed Days 5032 29,636 5065 26,857 4824 27,380 Average LoS 1.13 11.06 1.15 10.52 1.08 9.95

- 33 - Total Spend £3,734,434 £7,224,649 Heart and Circulatory Patients 1346 1449 1442 Admissions 499 1709 368 1776 396 1827 Bed Days 1078 28,415 558 27,273 982 26,600 Average LoS 2.16 16.63 1.51 15.36 2.48 14.56 Total Spend £627,656 £5,461,730 Neurology Patients 237 269 271 Admissions 48 225 63 260 44 296 Bed Days 261 4516 87 5241 73 5135 Average LoS 4.44 20.07 1.38 20.16 1.66 17.35 Total Spend £56,360 £929,040 Respiratory Patients 626 653 636 Admissions 134 938 156 956 136 1043 Bed Days 428 13,901 312 13,736 234 14,099 Average LoS 3.19 14.82 2.00 14.37 1.72 13.52 Total Spend £206,852 £2,769,902

- 34 - 7 Patients and Family Carers

Information from patients and carers has been gathered from a wide perspective of experiences and views which will be an ongoing process through out all three phases of the Marie Curie Delivering Choice Programme. The project team are continuously reviewing and assessing the methods of engaging with patients, carers and hard to reach groups and will endeavour to ensure their views and experiences are obtained using different methodologies to ensure services are improved to respond to their needs.

Methodology for gathering the information

The following section presents views and experiences of patients and carers.

Information regarding these experiences was collected using the following methodologies:

• Focus Groups • Independent Lay Advisory Group Group 1 Suffolk Health Forum Community Focus Group Group 2 • Group of family carers from St. Elizabeth Hospice Group 3 • Group of carers from St. Nicholas Hospice Group 4

• Story sent from a carer Carer 1

• Interviews with • Carer who cared for her father Carer 2 • Carer who cared for her mother Carer 3 • Carer who attended the older peoples Partnership board Carer 4 • Trainer at Suffolk Family carers Carer 5 • Patient story Patient 1

• Questionnaire from carer through post Carer 6

• Observations from shadowing session with District Nurses • Patient and carer Patient 2 • Patient and carer Patient 3

Group 1

The independent lay advisory group had feedback from carers wishing contribute to the report as follows.

One family carer mentioned the experience of a 98 year old lady who wanted to die at home. The family were impressed by the seamfree and quick service (delivery of hospital bed to her home) by four community nurses and the way in which they worked so well with private carers to deliver seamless care. She said that in the past, nurses had been very protective of their profession but that those barriers seemed to be less so now.

One family carer reported that she felt care and support needs to be available 24/7 and she emphasized the importance of everyone working together but she said that in her experience, it hadn’t always worked like that.

- 35 - Another family carer described a slightly different experience where a man wanted to die at home. They reported that she had a mixed experience of the Marie Curie Nursing Service, where some of the practitioners were very good and some were not. There was an issue of nontrained staff not being able to give pain relief. One family carer said that in her experience it was much more difficult to obtain medication following prescription changes out of hours. It was also noted that there was a big problem in coordinating palliative and end of life care in hours and out of hours.

“People are still being admitted to hospital out of hours simply because they can’t get pain relief.”

A family carers representative at the group posed the question of how culturally aware services are and they described an experience of a man who had Alzheimer’s disease and diabetes who was placed in a care home, but the family had to take him out because he was given inappropriate food. From the family’s perspective, this was totally inappropriate.

Group 2 (7.3)

This information was gathered from the Suffolk Health Forum Community Focus Group.

Reports from the group suggested that there needs to be more information readily available and accessible for family carers when caring for palliative and end of life stage patients. Additionally it was noted that often family carers are so busy getting on with the caring role that they don’t even consider that they might need help. One reported that as a family carer, having the ability to speak to someone for support outside of normal hours is very limited. For some family carers the group felt that it is some times difficult to take time out of work to make phone calls and appointments due to the lack of understanding from employers. Some of them felt that they were not well informed or signposted to services available to them.

The group felt that when it becomes apparent to agencies that there is a caring situation, they should be signposting the family carers to information and support services.

Group 3

This is information gathered from a group of family carers who belong to a family carer and patient group at St. Elizabeth’s Hospice.

The group talked about a mix of experiences over the past few years, the most recent experience being in the last 3 years. They felt that there may be some improvements in services now and the general experience of the clinical side of services was positive, however family carers did not feel they were being identified as individuals having their own needs. One consultant told a family carer “you are not my patient”.

Family carers reported that they felt services are not equitable across the county. One family carer had to travel to London with his wife for treatment as it was not available locally – this caused a huge impact on them in terms of practicalities, the ability to work and have the finances to fund the visits because no local services were available. The family carer had no option or choice but to accept that this was all that was available to them.

Family carers commented that in general the services they received were sporadic, variable in quality and accessibility. They felt that there appeared little coordination between professionals. There seemed to be no common link person to assist in the caring journey and there was much missed communication, broken links, no shared working and missed opportunities. All these factors impacted on the family carers ability to continue caring and stay well themselves.

The group reported that they received limited social care input, no referrals were made by their GP`s and they experienced little signposting to other services for support.

- 36 - One family carer expressed their good experience of one of the consultants at a local Hospital. All the family carers stressed that District Nurses in general had been effective, and that they had recognised their needs more than any other professional. There was a general feeling that many professionals were not approachable and they didn’t feel able to speak up; some family carers had experienced feelings of insignificance and not being included in key decisions of the patient. One stated they felt “very unsupported and everything we got we sorted out ourselves”.

All family carers stated that the “Hospice at Home” service was excellent and met all their needs. PALS (Patient Advice and Liaison Service) were mentioned as being very helpful, and one family carer had used the service for advocating with a successful outcome.

As a group it was felt that there was a “Massive breakdown in sharing of information, linking with professionals, recognising family carers as key to the whole planning of caring for the end of life patient”. One family carer stated that they were not offered a carers assessment at any stage. As a group they seemed unclear as to what a carer’s assessment was, and felt it was not relevant to them.

The group stated that they would have liked more support right from the beginning of diagnosis, better signposting to other services, information regarding benefits and other services that may have assisted them with the caring role and the offer of respite. All said they did not receive any information regarding bereavement at any stage of the caring experience including after the death of their loved one.

Group 4

This is information taken from a group of family carers who belong to a family carer and patient group at St Nicholas’s Hospice.

Family carers felt that in general across all areas of end of life services and at all levels of professionals, there needs to be more staff awareness of family carers, their role and their rights to a carers assessment and signposting to services. The group reported that an important point was the recognition of their role and their status through their journey of caring for a loved one at the end of life stage, right through to the bereavement stage. Family carers felt at present unaware of where services existed and of how to access them.

The group felt they would like to see more mentoring/buddy type services, better information sharing at the early stages of caring, improved signposting to all support services available to them.

Family carers stated they didn’t feel they were being listened to and therefore there may have been instances when choice and appropriate care and environment were not facilitated. They also commented that having a key worker, coordinator or facilitator to access would have been extremely helpful. The group mentioned the value of the District Nurses role but still felt there was room for improvement in their service.

It was key to the discussion, that family carers would value a 24/7 service that provided information, advice and more importantly hands on support in the home right at the critical end of life stage.

Carer 1

This family carer posted her story through to the team about the journey of caring for her father leading up to his death earlier in the year.

- 37 - My story

“It’s taken me quite a long time to find the strength to write this down, because it’s been really raw, but here goes….My dad was 72 when he died on the 4th April this year, the local paper called ‘it a courageous fight against cancer’ they always say that, but in dad’s case it was so appropriate, he really fought, to retain his dignity, retain his ability to still care about us, and not give in to the disease. He was first diagnosed early in 2009 with a small, large cell carcinoma in his lung. He responded well to treatment and apart from a bit of tiredness and some breathlessness he continued to live a pretty full life. He responded well to treatment and had no further growth of the tumour six months later.

During this time he appreciated the relationship he had developed with his consultant at the hospital and the ‘well beyond the call of duty’ support he had from his GP. He also found the Specialist Cancer Support Nurse very helpful. Around Christmas time dad started to get stroke like symptoms, and fatigue, He managed to get an urgent appointment with the consultant and an MRI scan. We were all hoping for the best, but inside I feared the worst, having nursed patients with brain metastasis. I was still shocked and upset when I got the call. Dad had chosen to retain an optimistic view, but at the same time was realistic about the prognosis. Despite the news I spent a very happy weekend in Ipswich, where we talked a lot, and when I got back I made contact with the Macmillan team who went in to assess Dad and his carer’s needs.

I was surprised at how complicated it was to get everything he needed to support him at home, despite all the support his carer still had to do a lot of chasing. One of the problems was the speed dad was deteriorating. By the time the equipment was in, his need had increased, so the services were playing catch up. In the meantime he had Radiotherapy to his head, which made his hair fall out. This really upset him; he had lived all his life with a thick mane of dark beautiful wavy hair, only going grey in his 60’s. There he sat with no hair and a big moon face because of the steroids, a blow for a man who always took pride in his appearance. We tried to help him do whatever he wanted to do, and felt up to doing, his carer got him a stair lift so he could come to have meals at the table, and we took him to the pub in his wheelchair. We went to see the St Elizabeth hospice, and he and his carer were genuinely excited about the prospect of going there on a day patient basis. (And possibly staying there too)

Late in March this year Dad fell over in the night and couldn’t get up, he was in pain and completely panicked so paramedics were called and he was admitted to hospital his initial diagnosis was cardiac arrhythmia and tachycardia. So he was admitted initially to CCU. During his stay (a week) he was moved 5 times, and ended up on an elderly care ward. The care he had was disjointed and staff seemed to be treating the symptom related to their speciality, rather than looking at things holistically. During this time he had excruciating back pain and it was only when his osteopath got permission to come into the hospital to treat him, it was realised that at no time during the 5 days he had been complaining of back pain had anyone suggested an x-ray. Once this was realised an x-ray was ordered and he was found to have fractured two of his vertebrae. The palliative care team tried to work with staff but this had limited effect. A hospice transfer was discussed briefly but no beds were available. Dad got really fed up, and probably aware of his rate of deterioration, and wanting to make the best of the time he had left, he just wanted to go home to be with his carer at home. On reflection, this was ill advised, although most equipment was set up, dad had already fallen out of bed once, and it was ‘policy’ not to let patients with brain mets have cot sides. Dad was not confused, ever; he was just used to sleeping in a really big bed! By this time dad was finding it difficult to sit for more than half an hour without resting. On the day of his discharge he was sent from the ward to the discharge area. There were beds in this area but when he asked to lay down the nurse said ‘It wasn’t allowed’ he sat for nearly 6 hours and by the time the ambulance delivered him home he was exhausted and distraught. In the end by the time the carers came to get him to bed he was too exhausted to even get him changed into his pyjamas. That night he fell again, and again his carer was unable to help him. They sat together on the floor for hours just crying, feeling completely helpless, until an ambulance was again called and he ended up back in hospital.

- 38 - When I arrived he was in A&E – he had perked up a bit but looked really awful. His carer looked exhausted. A&E was heaving at the seams, and dad soon was admitted to the assessment unit, where he was on a trolley (though I think these are officially called beds!) Unfortunately my dad was 6’2” and the trolleys are made for people much shorter. He was on the trolley for 5 hours and he was still in a lot of pain but the only way he could get comfortable was if I held his head and shoulder so his feet didn’t hang over the end. The staff tried to help but they were really busy. He was then admitted that evening to a ward. The staff on the ward were nice, though again not particularly confident in dealing with terminal cancer. I had taken in some beer because he wanted some, and the (very nice) staff nurse was flustered about the concept of letting his patients have alcohol! Once he thought about it he was fine. I was keen, bearing in mind his previous experience for Dad not to be moved around, but when a bed became available on the specialist cancer ward, I figured he would get more specialist care.

On Easter Thursday we popped into the Hospice and literally pleaded for a bed. Dad had said he really wanted to die at home, but failing that he wanted to be in the hospice. Julie the liaison nurse was lovely and even spoke to the consultant but they were full, and there were to be no bed meetings over the Easter bank holiday. The bank holiday did cause other problems, for example there were no palliative care team nurses, no Marie Curie nurses and hardly any doctors available to review medication. The staff were on the whole kind and experienced. Good Friday was a very bad Friday; we arrived on the ward at visiting time to find dad agitated and distressed. (I had been supported by friends and colleagues specialists in this area, but nothing could have prepared me for the trauma of seeing my dad like that) We were taken to one side by the staff nurse and warned he was getting worse.

I was concerned they were calculating his medication dosage on standard average body weight, and Dad was 16 stone, a concern shared by a member of staff, but because it was a bank holiday it was difficult to get hold of a doctor to come and review this, after some hours one did come and the dosage was increased.

Dad was being nursed in a 6 bedded bay surrounded by other patients and their relatives, I was conscious he was making the most distressing noises all the time because he was struggling to breathe. The staff nurse in charge was genuinely upset she couldn’t offer him a side room. The staff did what they could; the family had access to a family room and two of us family members stayed with dad all the time. We quietly talked to him, trying to reassure him and keeping him calm.

There was one particular staff nurse on the ward who was really wonderful, and a great balance between practical and caring. Dad died just after 11 pm on the Tuesday after Easter, I have no doubt the staff who looked after Dad were doing the very best they could, and many of them were brilliant.

I do have some concerns about the way the system works. Care needs to be more individualised, and staff need to be able to make decisions to improve things for patients. It’s the small things. I think the staffs were really desperate to do this; we were made lots of promises about things which were going to happen in a few minutes, which turned out to be hours. I know the system can’t be perfect for everyone all the time, and it is really important that when we talk to patients about choices in end of life care and encourage them to think about what they want, we also need to be clear with them they won’t always get this, and they may still end up dying in distress in a room with five other patients.

Nearly 200 people attended dad’s funeral, and he is missed every single day”

Carer 2

This family carer interviewed, cared for her father at home until he died. She is also a care worker for an agency.

The family carer felt she was not always informed of services available to her and her family, certainly not by the GP. She found the support in the last day of her fathers life at home was good

- 39 - from the Marie Curie Nurses and Hospice at Home service, but she would have liked much more support and preparation earlier on in his deterioration. The family carer also said that she felt she would like to see more equity of services, more 24 hour support in all aspects including contact, medication, personal response in the home, more signposting and referrals to other support services and information. The family carer would have liked a friendly face to talk to. She said she felt abandoned and of no value at times during this period.

The family carer said that there needs to be more recognition of the role and value of their role at such an emotive and sensitive time in a person’s life. She was keen to have her voice heard and felt very much that she was let down as a family carer and was not supported as all well as she might have been in the weeks leading up to the death of her father. However the support she received in her fathers last hours was better, but she feels that she would not wish the experience on others and is hopeful that this programme will enable the changes that are required.

Carer 3

This family carer looked after her mother who had made the choice to die at home. The family carer is a disabled person and has care needs herself.

It was the wish of this family carer and her mother that she could be enabled to die at home, as she had had a bad experience in hospital in the past; the family carer reported that without the support provided over a period of 18 months, by a doctor from her GP practice, she would not have been able to fulfil her mother’s wish to die at home. Marie Curie Nurses were very helpful during this time, but they couldn't give very much notice as to which nights they could come and care for the patient. This meant that the family carer had to cancel the private carers at the last minute which was not always an easy task.

Referral was made to a specialist nurse to help with breathing and coughing, but no contact was ever made to the family carer to facilitate this, despite reminders through the District Nurse.

The family carer rang Hospice at Home on the night her mother was dying, hoping they would send somebody out to support them. However, this was not a service they offered and they advised her to ring the Out of Hour’s medical team. The family carer felt that there was a lack of available care workers at times to support the comprehensive package of care in place for herself and her mother. It appeared that agencies were only able to send care staff before a certain time of night, which was often too early and not their choice of time.

The family carer reported that there was little training or supervision for herself and her mother’s care workers on the use of home oxygen after the initial installation. With her own care needs, the family carer was physically unable to administer Oramorph for her mother and agency care workers were not allowed to administer Oramorph. Private care workers were only able to do so after developing a system of signing for it and the family carer witnessing the administration.

In the last two months of the patients life, keeping her comfortable was a balancing act with the administration of Oramorph and the use of oxygen. District Nurses did provide some support but their time was limited. The doctor was in constant attendance providing advice in relation to the medication but also leaving it to her to adjust doses within the guidelines. Despite her mother’s terminal condition, the family carer understood that the care being provided to her was not considered ‘medical' and therefore appeared to be no financial support available to support her in her caring role.

The night she passed away the family carers mother became very ill about 11.30 pm. She assumed if she rang the Hospice at Home service that they would be able to help, but they just asked her to ring the Out of Hours medical team. She knew that this could have meant her mother dying in an ambulance, or whilst having tests or waiting at the hospital. The doctor had previously given her his private mobile number in case she needed help out of hours, so she rang him and he came to the house. He diagnosed heart failure and stayed with her until her mother passed away, approximately one and a half hours later.

- 40 -

Carer 4

This is information from a family carer who is a member of the Older Peoples Partnership Board in Suffolk and who wanted to have her experience of caring for her husband included in the report.

“For a year after my husband was diagnosed with dementia, I cared for him at home. My doctor was very helpful and sympathetic when my husband, who had dementia and was diabetic, was admitted to Hospital with a liver infection. The first week while his condition was being investigated I found it difficult to find information. The difficulty is that when a relative, say a wife or husband visits the patient in hospital, it isn’t always possible to discuss problems with a doctor. At no time was I offered carers assessment. He died two weeks after being admitted. On reflection I would have liked to have had more contact with the doctor in hospital.

Whilst caring for my husband I found that day centres were invaluable, not only do they offer respite for the carer but also a change of environment for the patient. When I was caring for my husband at home I was supported by Suffolk Family Carers and Crossroads, both voluntary organisations”

Carer 5

This information was recorded from an interview with Suffolk Family Carers training coordinator who works in both hospitals in Suffolk. Suffolk Family Carers provides services for family carers in Suffolk and if they live over the border but are registered with a Suffolk GP, the service will provide support or/and signposting to services.

It was reported that when a family carers role changes, such as at the bereavement stage, the service will continue to support them for one year and send information for the second year. However the service does not offer bereavement counselling, but does offer a range of therapeutic services such as aromatherapy. The organisation will also sign post family carers to relevant services according to their needs. Where appropriately they will refer them to more specialist services e.g. specialist palliative team. There are a range of support groups available to family carers relating to their support needs. Most services as accessed through the Family Carers Information Centre at Claydon in Suffolk, however each hospital team has a base in both hospitals. Family carers can be supported by visits from a family carer support worker in the hospital or at home.

It was commented that in the hospitals it is often not identified to the family carer that the patient is in the terminal stages of life, especially dementia and stroke. This situation results in the family carer being unprepared, with limited support, information and backup to support them through the experience. The interviewee reported that she had had much experience of patients going home from hospital but then returning within a week and dying in hospital shortly later. It was suggested that Suffolk Family Carers are often the only agency who will follow up the family carers situation, and ask how they are managing. It was suggested that this situation could be improved by all professionals acknowledging and listening to family carers and not focusing only on getting the patient out of the hospital.

Suffolk Family Carers do not distinguish between the stages of illness. The training coordinator noted that in her experience family carers expressed that getting to and from hospital to visit their loved one as costly. Also when the carer’s loved one is in hospital, the family carer is often in a crisis themselves and needs extra support to help them through the situation. Often this can also result in family carers feeling less able to challenge issues and ask for help due to their own low self esteem and vulnerabilities.

One of the most important aspects reported was the initial identifying of who family carers are through the GP practices and at a very early stage. It was suggested that it is a perception that all family carers are registered as a family carer at each practice, and that it is generally only the long term family carers who need support.

- 41 -

Carer 6

This information was received by post from a family carer who completed a questionnaire distributed through Suffolk Family Carers

“When my husband was dying in a care home I wanted him to be moved to the hospice but was told he couldn’t be moved, so he died in a noisy atmosphere, he had Alzheimer’s disease. No one offered me a carer’s assessment. I would have loved to have cared for my husband at home but was told it wasn’t practical.

It was like, this way of the authorities was the way it was going to be done and whatever I said made no difference”.

Patient 1

This is a case study from a care worker who reports how a patient with a long term condition and at the end of life stage, living in a very sheltered housing complex, was supported and enabled by staff to die in his preferred place of care at home.

The case study commences with the relationship breakdown between him and his family, who were not longer able to cope with his needs because of the deterioration of his condition. The gentleman had been diagnosed with Motor Neurone Disease (MND). Although he was a slightly younger person to be housed in very sheltered housing, it was agreed that they would be able to support this man in meeting his request to remain independent in the home of his choice, for as long as possible.

When the gentleman moved in to the complex it was a huge challenge for the staff because they had never cared for someone with MND. It was reported that they were unable to access any specific training because there was no trainers available in Suffolk who specialised in this disease. The gentlemen himself was very knowledgeable about the disease and was able to train the staff himself. There were numerous training and talking sessions with him. He appeared to find this very helpful because he wanted the staff to learn from the experience of supporting him in a positive way.

As the disease progressed he became more and more dependent, but he was still able to make his own choices. He had a PEG fitted and assisted staff with the training of this also, sometimes making them laughs, sometimes making them cry!

After a short stay in hospital he returned home after professionals had secured NHS Continuing Health Care funding for his extended care. A care agency provided this care for him and the staff were able to assist by providing double up visits. At times this was hard for gentleman who wanted the home to provide all his care, not an external agency with care workers that were not familiar to him. On a number of occasions he could be very challenging due to these frustrations.

When the gentleman started receiving NHS Continuing Health Care funding, this meant that he was no longer able to receive financial support from Adult and Community Services. This caused an issue which was hard as he had children that needed support.

As the disease progressed and the gentleman’s condition deteriorated further, the staff were able to continue caring for him after lengthy discussions with the NHS, and the successful agreement to fund the extra care which now needed to be for 24 hours. At this time is was a massive learning curve for all the staff at the scheme, who had never provided 24hr care before or who had never dealt with such a progressive disease and its symptoms. However this is what he had wanted and the staff had promised him that they would do everything in their power to ensure his wishes were upheld. His remaining wishes were to die at home; he did not want to go into hospital or to a hospice. This was a challenging time

- 42 - because there were two sides to the situation; one was that it was his wish to die at home and two that it was costing the NHS an enormous amount of funding. We were aware that they wanted him to be placed in the hospice and so we challenged these decisions. Finally with the full backing from his GP we enabled him to stay at home.

As the disease progressed he became unable to speak, communication was first through a lamp that the staff made and attached to his head; certain words were hung around the flat and he was able to move his head slightly to shine light on the words. Finally his only communication was through blinking.

We had earlier completed an advance care plan where he had agreed that he did not wish to be taken to hospital at any stage. However he did wish to be resuscitated should the need arise. The gentleman died with all the staff around him who had successfully supported this gentleman to make decisions about his life. The staff had enabled him to keep in contact with his children and had supported him to make informed choices, maintain his dignity and ensure his rights were upheld. As a result of this experience the sheltered housing complex has been approached to pilot the Gold Standards Framework and the end of life tools. The local hospital provided staff with a memorial service to enable them to come to terms with his death.

Patient 2

This information is gathered from patients and family carers whilst the shadowing of a District Nurse in her daily routine.

One family carer explained how they were offered hospice support of an admission for the patient, but were then told that they would have to wait two days. Instead they were advised to have a change of medication, however this meant that the husband had to collect the medication from the surgery dispensary and leave the patient alone at home which would be very difficult.

It was reported that often family members are not always aware of what a hospice is and this misunderstanding of the terminology caused the daughter to become distressed and frightened of the word; she said it made her wonder whether “if mother went in there, would she ever come out?”

One family carer had to inform the police about medication that they needed to dispose of because there seemed to be no other formal route for disposable of medication e.g. Controlled Drugs. No one had offered the family carer emotional support during the whole cancer pathway. Additionally the carer when waiting in the hospital waiting area, witnessed a person who was informed that his wife had breast cancer and who was notably ‘distressed’ but there appeared no support for this man.

They both felt there was a need for a proactive support, a named contact or a professional to take the lead. It was commented that they felt that often people’s expectations are variable and sometimes unrealistic. The patient and family carer felt there was a lack of sensitivity when medical staff were giving bad news to relatives.

Patient 3

This is the story of the end of life stage of a patient with MND who wanted to end his life at home and was enabled for this to happen.

The patient reported that they felt worse at night time, but did not want anyone to be contacted; they felt they just wanted to sleep and not bring it to the fore front. During a time spent in hospital the patient felt that he did not like the food and that they did not try to meet his needs. There appeared nowhere to prepare his liquidised food. However the patient and family carer felt that the Hospice was more able to meet his dietary needs. The family carer felt that it was helpful to be able to come in the mornings to help wash and dress the patient.

- 43 - It was reported that Marie Curie Nurses seem more able to support the choice of bedtime but that there is a gap in service support between 9pm – 12am and it was perceived that the Marie Curie support is only temporary and not regular.

The patient and family carer acknowledged that they had had a bad experience in the acute hospital, due to a problem with the administration of the first of the chemotherapy regime. It was reported that when the IV chemotherapy was set up it leaked onto the floor; additionally the patient felt that when they had been vomiting there seemed to be little empathy shown from staff at the time.

With regard to support services, the family carer was unaware that Suffolk Family Carers could offer them any support and therefore they did not approach the organisation.

It was felt that the Macmillan nurses were not “hands on”, not helpful and they had no contact over long periods of time. However the family carer did have support from one of the Crossroads Care organisations which provided them with 3hrs of respite on a weekly basis, giving them a break from caring and time to themselves.

The following issues were raised as barriers to effective palliative and end of life care in the community and have been themed as follows:

Service issues

Issue 7/1 On Friday, Saturday and Sunday the NHS do not exist, the hospice was the only place you could ring if needed and they would ring back an hour later

Issue 7/2 Social carers came in at any time, not as arranged and not the same person

Issue 7/3 Social worker did a social assessment and the communication stopped Issue 7/4 There was a delay in accessing a bed at the hospice of two days

Issue 7/5 There is a lack of overnight nursing care

Issue 7/6 Professionals don’t always seem to work together

Issue 7/7 Pain relief is often the reason whether or not people are able to stay at home. Issue 7/8 Hospital not able to meet patients dietary needs; patient required liquidised food. The Hospice was much more adaptable to his dietary needs. Issue 7/9 “I was surprised at how complicated it was to get everything he needed to support him at home, despite all the support the carer still had to do a lot of chasing. One of the problems was the speed dad was deteriorating. By the time the equipment was in, his need had increased, so the services were playing catch up”. Issue 7/10 During his stay (a week) he was moved 5 times, and ended up on an elderly care ward. The care he had was disjointed and staff seemed to be treating the symptom related to their speciality, rather than looking at things holistically. Issue 7/11 A hospice transfer was discussed briefly but no beds were available.

Issue 7/12 Although most equipment was set up, dad had already fallen out of bed once, and it was ‘policy’ not to let patients with brain mets. have cot sides. Issue 7/13 There were beds in this area but when he asked if he could lay down the nurse said ‘It wasn’t allowed’ he sat for nearly 6 hours and by the time the ambulance delivered him home he was exhausted and distraught. Issue 7/14 That night he fell again, and again his carer was unable to help him. They sat together on the floor for hours just crying, feeling completely helpless, until

- 44 - an ambulance was again called and he ended up back in hospital. Issue 7/15 The staff tried to help but they were really busy. Issue 7/16 Lack of knowledge and understanding when caring for terminally ill patients Issue 7/17 Unable to admit to a hospice bed over the bank holiday weekend Issue 7/18 Lack of Marie Curie Nurses over the bank holiday Issue 7/19 Lack of doctors to review medication Issue 7/20 “We were made lots of promises about things which were going to happen in a few minutes, which turned out to be hours”. Issue 7/21 “When my husband was dying in a care home I wanted him to be moved to the hospice but was told he couldn’t be moved so he died in a noisy atmosphere, he had Alzheimer’s disease” Issue 7/22 No it was like, this way of the authorities was the way it was going to be done and whatever I said made no difference Issue 7/23 I would like to see most things improved Issue 7/24 “I was aware of services available but was told that in our case it wasn’t possible for me to care for my husband at home due mainly to the lack of a package deal” Issue 7/25 “The first week while his condition was being investigated I found it difficult to find information” Issue 7/26 I would like to see more contact with the doctors in hospital. Issue 7/28 I was not aware of services available until it was too late. Issue 7/29 Referral was made to a specialist nurse to help with breathing and coughing, but no contact was ever made, despite reminders through the district nurse. Uncertain what service this was or who it was provided by. Issue 7/30 The patients daughter rang Hospice at Home on the night her mother was dying, hoping they would send somebody out to support them. However, this was not a service they offered and they advised her to ring the Out of Hours medical team. Issue 7/31 Did not like the food in hospital; family carers felt they did not try to meet the patients needs. There was no where to prepare the food was the hospital explanation. He required liquidised food. The Hospice is much more adaptable to his dietary needs. Issue 7/32 Lack of available care workers at times to support comprehensive package of care for the patient and her family carer

Access to services

Issue 7/33 As the NHS was now funding the care he was no longer able to receive the support from ACS, which was hard as he had children who needed support. Issue 7/34 This was a trying time for all as we had two sides to this, one it was his wish, two it was costing the NHS an enormous amount of money to keep him at home, they wanted to have him placed in a hospice, we challenged these decisions and with the full backing of his GP, again we were able to allow him to stay at home. Issue 7/35 No social care contact at all, Issue 7/36 Some signposting but little specific family carers services – Issue 7/37 No GP referral to services for family carers apparent in this group or recommendation of a carers assessment from social care Issue 7/38 Getting to and from hospitals for family carers is costly and often an issue. Issue 7/39 Gap in service support 9pm – 12pm. The Marie Curie night nurse was only temporary. Issue 7/40 Not sure who, where or how to access services Issue 7/41 Agencies only able to send carers before a certain time of night, which was often too early. Issue 7/42 Gap in service support 9pm – 12pm. The Marie Curie was only temporary.

- 45 - Issue 7/43 Better information on how to access services, knowledge of the referral processes and what is available

Psychological Support

Issue 7/44 All three family carers said they did not receive any information regarding bereavement Issue 7/45 When family carer’s loved one is in hospital they are often in a crisis and need support psychological support Issue 7/46 Macmillan is ‘not hands on’ which is not helpful.

Issue 7/47 No bereavement information or support received Issue 7/48 Didn’t receive bereavement support Issue 7/49 Not aware of any support services. Issue 7/50 There was little training or supervision for the carer on her mother’s carers on the use of home oxygen after the initial installation. The carer would have felt more comfortable if somebody could have come round after the installation to check everything was OK.

Family & Carers Support

Issue 7/51 “It was the quality of life I was not prepared for, no one came in touch with us”

Issue 7/52 We didn’t feel our voices were fully heard at all times.

Issue 7/53 We would have liked more support right from the beginning of diagnosis, better signposting to other services, information regarding benefits and other services that may assist with the caring role and offer some respite even. Issue 7/54 Regarding carers assessments; the carers are unaware of what this was or even felt if was relevant to them, no one at any stage discussed it with them. Issue 7/55 One carer stated they felt very unsupported and “everything we got we sorted out ourselves” Issue 7/56 Family Carers did not feel they were being identified as carers having their own needs. One consultant told carer “you are not my patient”. Issue 7/57 Do not often get involved in GSF meetings at surgeries, only if the carer asks the team. It is often the families who are not identified at the GSF meetings, and who often need more support. Issue 7/58 In hospital it is often not identified to the family carer that the patient is in terminal stages of life, especially dementia and stroke. The family carers are often left unprepared; without support, information and backup. Issue 7/59 Often Suffolk Family Carers are the only agency who will follow up the family carers and ask how they are getting on. Issue 7/60 Family carers are less likely to challenge issues because they are often too stressed and have low self esteem during the crisis period. Issue 7/61 GPs have under utilised family carers registers. Related to end of life, perception newly registered carers and it is often the long term carers who need the support. Issue 7/62 No one has offered the carer emotional support during the whole cancer pathway.

- 46 - Issue 7/63 The carer when waiting in the hospital waiting area has witnessed a person who had been informed his wife had breast canter ‘distressed’ no support.

Issue 7/64 They both felt they was a need for a proactive support, a named contact to be added. For the professional to take the lead, it is often necessary. Issue 7/65 People’s expectations are so variable. Issue 7/66 Suffolk Family Carers – thought they were for over 65 yrs. Therefore family carer did not approach the organisation. Issue 7/67 “I do not feel I had my voice heard”

Issue 7/68 No one offered me a carers assessment Issue 7/69 I was not offered a carers assessment Issue 7/70 Day centres are invaluable, not only do they offer respite for the carer but also a change of environment for the patient. Issue 7/71 The patient’s daughter was physically unable to administer Oramorph for her mother. Agency carers were not allowed to administer Oramorph and private care workers were only able to do it after developing a system of signing for it and the patient’s daughter witnessing the administration.

Issue 7/72 In the last two months of her mother’s life, keeping her comfortable was a balancing act with the administration of Oramorph and the use of oxygen. District nurses did provide some support but their time was limited. The doctor was in constant attendance advising the patient’s daughter but also leaving it to her to adjust them within his guidelines.

Issue 7/73 Despite the patients terminal condition, the care being given was not considered ‘medical' and therefore there was no funding for family carers. Issue 7/74 No one offered the family carer emotional support during the whole cancer pathway. Issue 7/75 It was the patients wish to die at home as she had had bad experiences in hospital in the past. The patients daughter assumed if she rang the Hospice at Home that they would be able to help, but they just asked her to ring the out of hours medical team. The patients daughter knew that this could have meant her mother dying in an ambulance, or whilst having tests or waiting at the hospital. The doctor had previously given the patient’s daughter his private mobile number in case she needed help out of hours, so she rang him and he came to the house. He diagnosed heart failure and stayed with her until her mother passed away, approximately one and a half hours later.

Training and Attitudes

Issue 7/76 Lack of sensitivity in way staff give bad news Issue 7/77 There was an issue of nontrained staff not being able to give pain relief. Issue 7/78 When it came to changing patches, the paid carers couldn’t do it but the relatives could. In the end they did it together but although the relatives were shown how to do this they didn’t feel confident Issue 7/79 Lack of specific training as Suffolk did not have a specific trainer for this disease. Issue 7/80 This was a massive learning curve for all the staff at the scheme, we had never provided 24hr care to anyone, we had never dealt with such a progressive disease. Issue 7/81 Services are not equitable across the county. One family carer had to travel

- 47 - to London with his wife for treatment as it was not available locally – this caused huge impact on family carer in terms of practicalities, ability to work and finances to fund the visits – no local services available. The family carer had no option or choice. Issue 7/82 In general services are sporadic, variable in quality and accessibility. Issue 7/83 General feeling that many professionals were not approachable and family carers didn’t feel able to speak up – some experiences of feeling insignificant and not included in key decisions. Issue 7/84 Massive breakdown in sharing information, linking with professionals, Issue 7/85 Acute hospital was a bad experience due to the Chemotherapy leaking when administered; also when vomiting. Lack of empathy from the nurses none illustrated. Issue 7/86 More staff awareness of family carers and their role as well as their rights to an assessment. Issue 7/87 Marie Curie respite carers were very helpful but they couldn't give very much notice as to which nights they could come and care for the patient. This meant cancelling private carers at the last minute. Issue 7/88 Introducing a living will; changes of staff therefore unable to coordinate the living will and had to repeat information

Issue 7/89 No advance care planning

Issue 7/90 GP not supportive toward the relatives caring role, did not offer support or advice

Issue 7/91 No mention of a carers assessment at any stage and what this might offer

Issue 7/92 No referral to social care by anyone

Issue 7/93 Carer said no professionals explained to them that as far as they are aware that he was dying

Issue 7/94 There was no awareness that her father had been asked about where he may choose to die

Issue 7/95 Carer felt frightened, unsupported out on a limb and abandoned during the process leading up to her fathers death

Information

Issue 7/96 The difficulty is that when a relative say a wife or husband visits the patient in hospital it isn’t always possible to discuss problems with a doctor.

Diagnosis & Prescribing of Drugs

Issue 7/97 They were offered hospice support of an admission but unfortunately would have to wait two days. Issue 7/98 They were advised a change of medication was required –and told that the husband would have to collect them from surgery dispensary which would mean leaving his wife a lone which was difficult. Issue 7/99 I feel my father should have been told more directly of his prognosis, he seemed unaware that he was so close to death

- 48 - Choice & Appropriate Environment and Care

Issue 7/100 Patient identified need to discharge required 4 x home visits. Unable to find care package and therefore not discharged. The patient’s wife had to formally agree and sign against medical advice to support patients chance to die at home. Carer’s worker supported patient’s carers as an advocate – there was no apparent recognition to think out of the box to allow patient to return home. Issue 7/101 Carers stated they didn’t feel they were being listened to and therefore there may have been instances when choice and appropriate care and environment were not facilitated Issue 7/102 Because the information was not provided in a timely fashion our choices were limited. Issue 7/103 “We were happy to care for my father but did not feel it was a supported experience until the very few last hours and therefore we did not have the chance to make many choices about his death”

Co-ordination & the End of Life Care Pathway

Issue 7/104 There appears little coordination between professionals

Issue 7/105 No common link person to assist in the process and care pathway Issue 7/106 So much missed communication and broken links

Issue 7/107 No shared working causing missed opportunities

Issue 7/108 Post discharge – physical care to husband very difficult – care packages difficult to set up immediately not 3/52 after discharge.

Issue 7/109 Fragmented, not smooth, gaps in provision for carers,

Issue 7/110 Uncertainty around roles of Hospice at Home, Macmillan and Marie Curie.

Issue 7/111 What kind of support does the Hospice at Home or the 24 hour Marie Curie service offer? Even if a doctor was needed to confirm what was happening, surely someone else could have come to provide some support whilst her mother was dying

Issue 7/112 Post discharge – physical care to husband very difficult – care packages difficult to set up immediately not 3/52 after discharge. Issue 7/113 It was not obvious who was coordinating his care, this could be improved.

Issue 7/114 Better sharing of info and feeling a part of the situation might have made the experience more comforting for myself and my family.

Out of Hours

Issue 7/116 Family carer wanted a lead professional to give proactive support

Issue 7/117 For articulate family carers they felt they got a good service

Issue 7/118 For family carers who felt unable to speak up the service was not good

- 49 -

Issue 7/119 The care from the district nurses and domiciliary staff was mixed and not as high a level as I would expect. I am a paid carer myself and very aware of standards of care. Definitely room for improvement.

Other issue 7/120 Carers weren’t told how to dispose of medication told take them to the police issue 7/121 Peoples expectations of services are so variable

The following recommendations were suggested:

Suggested recommendations Frankness of diagnosis would be appreciated 7/1 Suggested recommendations More family carer awareness training for GP’s and practice 7/2 staff

Suggested recommendations Introduction to family carers support services at a much earlier 7/3 stage

Suggested recommendations Availability of a helpline, 24/7 support, a voice to talk to, 7/4 someone to chat things through and make the family carer feel supported and not so alone

Suggested recommendations Better information on how to access services, knowledge of 7/5 referral processes and what is available

Suggested recommendations Improved services 7/6 Suggested recommendations Improvement in the range of services for family carers and if it 7/7 was available 24/7

Suggested recommendations More information and advice from GP practices 7/8 Suggested recommendations I would like a better range of information provided to me at an 7/9 early stages of caring so that I and more prepared leading up to the death of a loved one

Suggested recommendations “I feel my father should have been told more directly of his 7/10 prognosis, he seemed unaware that he was so close to death”

Suggested recommendations It was not obvious who was coordaining the care, this could 7/11 be improved

Suggested recommendations All agencies need to work together to ensure people's wishes 7/12 to die at home are fulfilled.

Suggested recommendations The terminally ill person and their carers need a named key 7/13 worker who coordinates their care and is a single point of Contact for all the services they require.

Suggested recommendations There has to be a human response to a terminal crisis

- 50 - 7/14 situation which is available 24 hours a day, 7 days a week

Suggested recommendations When carer’s person is in hospital they are often in a crisis 7/15 and need support psychological support.

Suggested recommendations Professional need to listen to the families and not focus on 7/16 just getting the patient out of hospital.

Suggested recommendations Most important aspect is identifying who the carers are. GPs 7/17 have carers under utilised registers.

Suggested recommendations I think every care home should have a block for end of life 7/18 care Suggested recommendations I would like to see most things improved 7/19 Suggested recommendations Day centres are invaluable, not only do they offer respite for 7/20 the carer but also a change of environment for the patient.

Suggested recommendations I would like to see more contact with the doctor in hospital 7/21 Suggested recommendations More equity of services, more 24 hour support in all aspects of 7/22 contact, medication, personal response in the home,

Suggested recommendations More signposting and referrals to other support services and 7/23 information. A friendly face to talk to.

Suggested recommendations Recognition of the role of the carer and their needs 7/24 Suggested recommendations A carer being informed of their right to an assessment, which 7/25 could lead to more support and vital benefit/financial support at an earlier stage. Suggested recommendations Offering early support to carers, information and advice – 7/26 signposting them to services such as Crossroads for respite and Suffolk Family Carers for other types of support. Suggested recommendations “We would have liked more support right from the beginning of 7/27 diagnosis, better signposting to other services, information regarding benefits and other services that may assist with the caring role and offer some respite even” Suggested recommendations “We would like to be listened to and included and recognised 7/28 as integral to the care of the patient” Suggested recommendations Care needs to be more individualised, and staff need to be 7/29 able to make decisions to improve things for patients. It’s the small things. Suggested recommendations It is really important that when we talk to patients about 7/30 choices in end of life care and encourage them to think about what they want, we also need to be clear with them they won’t always get this, Suggested recommendations What you want is 24 hour care and the problem is delivering 7/31 24 hour care at home.

Suggested recommendations If you could be assured of 24 hour total nursing care, more 7/32 people would be prepared to stay at home.

Suggested recommendations You need to look deeper: people are worried about dying with 7/33 strangers or people who don’t care about them.

- 51 - Suggested recommendations It’s important for the services to talk to each other. 7/34 Suggested recommendations You need resources to change things to create choices 7/35 Suggested recommendations Care needs to be available 24/7 and emphasized the 7/36 importance of everyone working together

Suggested recommendations The family carer said that care needs to be available 24/7 and 7/37 emphasized the importance of everyone working together Suggested recommendations Mentoring/buddy service 7/38 Suggested recommendations Better information sharing at earlier stage, 7/39 Suggested recommendations Better signposting to other support services 7/40 Suggested recommendations Recognition of the role of the carer, and their status through 7/41 the journey of caring Suggested recommendations Introduction to family carers support services at a much earlier 7/42 stage. Suggested recommendations Availability of a helpline, 24/7 support, a voice to talk to, 7/43 someone to chat things through and make the carer feel supported and not so alone. Suggested recommendations No referrals made by GP, 7/44 Suggested recommendations None of group aware of Suffolk Family Carers at time of 7/46 caring Suggested recommendations I think everyone is entitled to die in a dignified way like at the 7/47 hospice Suggested recommendations I think every care home should have a block for end of life 7/48 care patients Suggested recommendations Ideally I would like the hospice to be able to take patients 7/49 other than just cancer patients. Suggested recommendations Family carers need to get a break. 7/50 Suggested recommendations There is no contact over long periods of time with Macmillan 7/51 nurses. Suggested recommendations Improved family carers services 7/52 Suggested recommendations Most important aspect is identifying who the family carers are. 7/53 Suggested recommendations More signposting by all professionals. 7/54 Suggested recommendations More support at all stages of caring through to death of patient 7/55 Suggested recommendations There needs to be more information readily accessible for 7/56 family carers. As a family carer you are so busy getting on with it that you do not even consider you need help yourself. Suggested recommendations The ability to speak to someone outside of normal hours, it is 7/57 difficult to take time out of work to make phone calls, appts etc. Suggested recommendations Improvement in the range of service for family carers 7/58 Suggested recommendations Services for family carers available 24/7. 7/59 Suggested recommendations We would like to be listened to and included and recognised 7/60 as integral to the care of the patient.

- 52 - Suggested recommendations More information and advice from GP practices 7/61 Suggested recommendations Recognising carers as key to the whole planning of caring for 7/62 the End of Life patient Suggested recommendations Care needs to be more individualised 7/63 Suggested recommendations Staff need to be able to make decisions to improve things for 7/64 patients. It’s the small things Suggested recommendations More family carer awareness training for GP`s and practice 7/65 staff Suggested recommendations I know the system can’t be perfect for everyone all the time, 7/66 and it is really important that when we talk to patients about choices in end of life care and encourage them to think about what they want, we also need to be clear with them they won’t always get this Suggested recommendations More centralised information, bringing together of information 7/67 Suggested recommendations More shared information, better links across all agencies 7/68 Suggested recommendations Better access and signposting to information from 7/69 professionals Suggested recommendations I think as soon as it becomes apparent to agencies that there 7/70 is a caring situation that information should be given. Suggested recommendations I would like a better range of information provided to me at the 7/71 early stages of caring so that I am more prepared leading up to the death of a loved one. Suggested recommendations More centralised information, bringing together of information 7/72 Suggested recommendations Carers felt a key worker, coordinator or facilitator to go to 7/73 would have been helpful, carers mentioned the value of the District Nurse role but still room for improvement. Suggested recommendations The ability to acknowledge and allow family carers to speak 7/74 up is paramount to improving the family carers experience of caring at the end of life stage of their loved one.

- 53 - 8. Hospital Care

8.1 Ipswich Hospital Trust (“IHT”)

Ipswich Hospital trust is an acute general hospital situated in the town of Ipswich, Suffolk The majority of people accessing services at IHT are residents from the East and Middle of the County of Suffolk. The hospital has 510 beds, including a 9 bedded critical care unit, a cardiac monitoring unit, and a day oncology/haematology unit that has an outreach service. There is also an Emergency Assessment Unit and private beds are available.

Information regarding delivery of endoflife care and admission and discharge processes in IHT was collected using the following methodologies:

Audit • Emergency admission audit within the hospital by the Urgent Care Transformation Team during 21st – 27th April 2010 and on 7th May 2010. • Discharge audit of palliative and endoflife patients within the hospital from 2nd – 13th August 2010.

Focus Group

• The Palliative Care Team Clinical Nurse Specialists (“CNS”)

Interviews with;

o Consultants in the hospital, including Consultants in the care of the elderly and oncology. o Site specific Head Matrons, including Emergency Department, Emergency Assessment Unit and Oncology. o Ward Matrons on the care of the elderly and respiratory wards. o Senior Staff Nurse on Stroke Ward. o The Chaplain o Family Support Worker, a social worker attached to the oncology ward. o Members of the integrated Discharge Planning Team, including the team manager, discharge coordinators and nurse. o The Occupational Therapy Service Manager. o The Physiotherapy Senior Manager (TBC). o Marie Curie Discharge Facilitator.

Process Mapping

The following section outlines combined findings using the above methodologies. It is important to note that where process maps are presented, these are based on descriptions given by hospital staff, but that these descriptions often varied between individual staff members, which may result in some inaccuracies in the process maps. This variation highlights the way processes may vary by ward and by nurse, and may result in different experiences of care for patients and their carers.

Positive comments, issues, challenges, and suggestions for improvement raised by hospital staff are presented at the end of the subsections to which they relate.

Please note that issues and challenges highlighted by staff may be individual perceptions rather than an organisational view or policy. Issues are also highlighted from the audit.

- 54 - Admission

Patients can be admitted to the wards in IHT from the Emergency Department (“ED”), the Emergency Assessment Unit (“EAU”), Out Patient Clinics or transferred from another ward or hospital.

Process map 1: IHT, Patient Flow in and out of EAU IPSWICH HOSPITAL TRUST Patient Flow in and out of EAU

Potential patient need for EAU

Direct Referral by GP Referral via Referral from OPD GP (30%) A&E (70%)

EAU may advise GP to send patient direct to A&E (eg stroke)

Patient admitted to EAU and assessed (LOS mostly 01 days)

Patient transferred Patient transferred to Capel ‘Short to outlier/other Stay’ (LOS 23 ward days)

Patient discharged from hospital

Hours of operation for the EAU

The EAU unit functions 24 hours a day with all trolley based areas operate from 08:00 hours – midnight. The last referral accepted into a trolley based area is 22:00 hours.

The EAU has 21 beds, 15 trolleys and 2 chairs and takes admissions from the ED, GP referrals and Out Patient Clinics. The Acute Assessment trolley area operates a 4 – 6 hour policy and serves to accommodate the emergency assessment of acutely ill patients. Following initial assessment patients may be transferred to other areas including:

• Short stay (up to 48 hour stay) medicine Ward.

• Short stay surgery (up to 48 hours) Ward.

• Short stay elderly care (up to 5 days) ward (part of the complex care work stream)

• Direct transfer from the E.A.U. to the complex and speciality beds will be undertaken to promote patient flow and ensure the patient reaches the correct speciality area at the earliest opportunity.

• Longer stay surgery (speciality/ complex beds) on to ensure patient flow is maintained.

- 55 - • Flow in to specialist and complex medical beds via speciality and complex work streams via the specialist bed managers assigned to the areas.

• Patients with head injury will be admitted under the surgical team

The Palliative Care Team and the Marie Curie Discharge Facilitator assess patients in both ED and EAU. There is a link nurse who is a member of the “EndofLife” group at IHT. The purpose of the “ End of Life “group is to ensure the provision of high quality, effective and timely end of life care in Ipswich Hospital NHS Trust, available to everyone according to need. They meet every 6 weeks and membership consists of:

• Consultant(s) • Director of Nursing and Quality • Matron(s) • Nurse Specialists • Community Macmillan Nurse • Transplant Coordinator • Chaplain • Others are requesting to attend at certain times

The “End-of-Life” group has specific responsibilities:

1. To implement and embed the End of Life Strategy into everyday clinical practice, utilising the Liverpool Care Pathway (LCP), Gold Standard Framework (GSF) and Preferred Place of Care (PPC) 2. To ensure that all medical, nursing and AHP’s employed by the Trust are competent to deliver end of life care 3. To initiate and sustain end of life care education for all general staff 4. To develop robust links with primary care teams, social care teams and the voluntary sector 5. To ensure good end of life care in nursing and residential homes by providing continuity of care from the hospital setting

The Palliative Care Team will also receive referrals to assess patients and to see if they can support to avoid admission and discharge home. Staff stated that the palliative and endoflife patients tend to arrive in the unit with varying levels of accompanying information and in some cases this may only consist of the ambulance notes. Rarely, staff reported, do they manage to discharge the patient home.

Staff highlighted the following issues in relation to the admission of palliative care patients:

Patients are often not being allowed to die in nursing homes. Issue 8.1/1

High death rates in some homes are interpreted as a “poor home”. Issue 8.1/2

There is a lack of a community In reach Issue 8.1/3

There is a lack of knowledge of how other medication reacts with pain Issue 8.1/4 relief and symptoms lead to admission Women are fearful of dying in their sleep and not being discovered. Issue 8.1/5

There is no consistency in the end of life admission pathway Issue 8.1/6

There is a lack of community palliative care resources Issue 8.1/7

The person living alone is a real challenge. Issue 8.1/8

- 56 - Issue 8.1/9 Sometimes the Community Matrons are involved with COPD patients but not involved to the commitment of end of life care which crosses over with admission avoidance. Issue 8.1/10 Families do not often know who to call.

Issue 8.1/11 There is no single point of contact for relatives to contact when unsure of changes in patient’s condition

Issue 8.1/12 Patients come into hospital for symptom control don’t need to be, they could be treated in the community with the correct support Issue 8.1/13 Care provision is not always available and can be difficult to provide particularly in rural areas Issue 8.1/14 There is lack of community support for frightened families noone to ring

Issue 8.1/15 Sometimes people are inappropriately admitted e.g. SOB and not able to be dealt with in the community

Issue 8.1/16 Lack of information on admission, reliant on information recorded in ambulance notes

Issue 8.1/17 More patients are admitted at weekends and OOHs

Issue 8.1/18 EAU / ED is not a calm environment for these patients

Issue 8.1/19 Paramedics bring patients in, not aware of the skills within the community teams who deal with respiratory patients

Issue 8.1/20 OOHs will admit patients when there is no need to

Issue 8.1/21 There is no real pain management and there are many admissions

Issue 8.1/22 Specialists appear to be concentrated in cancer services the other terminal conditions are missed and are admitted

Staff made the following recommendations

Suggested There is a need for awareness training for staff regarding roles in the improvement 8.1/1 community Suggested There is a need for community specialist palliative support for other improvement 8.1/2 conditions than only Cancer Suggested Resource hub good idea with SPA to prevent admissions. Could have a improvement 8.1/3 CNS or palliative care team is access route Suggested improvement 8.1/4 There is a need to develop support for symptom control in community. Suggested improvement 8.1/5 There needs to be a resource to support the elderly who live alone Suggested improvement 8.1/6 There should be support to allow patients to die in Nursing Homes Suggested To increase more palliative care nurses in community and develop a improvement 8.1/7 rotation service with other providers Suggested There is a need to include information from the community to hospital of improvement 8.1/8 the patients wishes Suggested improvement 8.1/9 Harmoni could do more for admission avoidance Suggested Single point of contact that could help at the time and give advice and improvement 8.1/10 reassurance to avoid appropriate admissions

- 57 - Suggested improvement 8.1/11 Admission avoidance team is needed Suggested improvement 8.1/12 OOHs need someone in between Suggested Carers to be more confident by having link to call to avoid calling improvement 8.1/13 emergency admission services

The Early Intervention Team (EIT)

A multi professional team of Nurses, Physiotherapists, Occupational Therapists, Assistant Practitioners providing health, function and social care assessments, treatment and intervention to prevent unnecessary admission to hospital. The team is commissioned by NHSS and provided by SCH. Membership of the team consists of 0.8 WTE Band 7; currently a RN but may be any clinician; 2.83 WTE Band 6 Therapists; 1 WTE Band 4 and Generic workers

The EIT are based within the Emergency Department of Ipswich Hospital and can be accessed via the hospital pager system; the team receive referrals from A&E, EAU and the Fracture Clinic for patients who are deemed medically fit and does not require acute hospital care, but who may have a reduction in function due to their presenting condition. This may be an injury following a fall such as a fracture, an infection or an exacerbation of an existing medical condition resulting in a change in function.

Following the patient’s assessment, the team will support the discharge back to the home setting by providing short term rehabilitation and equipment to support function. Should there be a need for long term rehabilitation; a referral is made to the Local Healthcare Team. If following assessment the patient is not functionally fit for discharge, the team will liaise directly with the relevant hospital team, sharing assessment information to prevent repetition and promote a timely discharge.

Table 1: EIT Activity data

Measure Apr-10 May-10 Jun-10 Jul-10 Aug-10 Face to face 52 38 47 28 62 Contacts Telephone 0 3 4 1 4 Contacts Referrals 37 28 38 28 42

Emergency Admissions Audit

As part of the East of England QIPP programme, NHS Suffolk launched a major review of urgent care in December 2009. This review, the findings and recommendations, informs and supports this report. During 21st – 27th April 2010 admission activity was reviewed to obtain evidence to support care alternatives. The audit considered potential outcomes to support delivery of systemwide standards relating to: • Patient safety and clinical quality • Delayed transfer of care • Delivering choice of place of death

The audit recorded all admissions into EAU via GP and A&E. On Friday 30th April 2010 a full audit of all ambulance conveyances to A&E was undertaken.

A total of 185 patients were tracked, 4 patients average age of 67 years. Collated in this activity were palliative care referrals for symptom control.

- 58 - Table 2: Source of Admissions

Source of Admissions Number

GP 1 Palliative Clinic 1 ED 2

Case Study

82 year old female with Metastatic carcinoma admitted via A&E for palliative pain control for distended abdomen. The patient lives in wardencontrolled accommodation and was admitted for pain control and IV fluids.

The results of the review identified issues in accessing alternative provision and approximately 20% of the total presenting cases could potentially be prevented.

Palliative Care within the hospital

The Ipswich Hospital Palliative Care Team provides an inpatient service available to all adults cared for within the Trust and limited Out Patient service in the form of a consultantled Out Patient clinic. The hospital team provides symptom control, psychological, social and spiritual support to patients and their family carers. The trusts are actively recruiting for a Palliative Care Consultant at the time of writing this report. The team consists of:

• One Whole Time Equivalent (WTE) Consultant in Palliative Care • One WTE Marie Curie Discharge Planning Nurse (Vacant) • Two WTE Nurse Palliative Care • One 0.4 Nurse Palliative Care • One 0.6 Nurse Palliative Care • One WTE Social Family Support Worker

The Palliative Care Team operates its routine service Monday to Friday, from 0800hrs to 1600hrs. Outside of these times a telephone advice service is available for urgent symptom control advice only and is provided by the In Patient Unit at St Elizabeth Hospice Care. Initially a ward nurse will deal with the enquiry; a palliative care consultant can be accessed for advice if necessary. The team provides an inpatient service available to all adults within the trust with any diagnosis. In addition it provides a limited outpatient service in the form of a consultantled outpatient clinic.

On the wards, doctors or nurses can invite the team to become involved in the care of a palliative patient. Referrals can be accepted from all professional groups and patients, their families and carers. Referrals are made over the telephone, by bleeping the team or via a letter usually from Medical Consultants. Referrals are prioritised by individual team members as they come through, based on the complexity of the patient’s needs. The Palliative Care Team is usually able to respond to all within 48 hours of receiving a referral during routine hours.

In responding to a referral, the clinical nurse specialists will make an assessment of the patient and then discuss their needs with the doctors and/or nurses involved in their care, they also document in the patient’s medical notes. Ongoing assessment and involvement in the patients’ care is determined on individual need. The Palliative Care Team, including the extended members, meets weekly to discuss all patients on their caseload. The Palliative Care Team members will attend case conferences for particularly complex patients. The team also provide training and education programmes for staff within the hospital, the attendance has been poor. The team are involved with

- 59 - supporting programmes run by the local University and organising study days however there has been no agreement to reimburse the trust.

Discharge of the patients remains the responsibility of the doctors and ward nurses:

For straightforward discharges, the Palliative Care Team does not need to be involved, the ward follows the usual discharge process to refer via telephone to the Integrated Discharge Planning Team, and electronically to Occupational Therapy and Social Care Services

In complex cases, the Palliative Care Team are able to offer advice and for patients who maybe in their last two weeks of life, the team can assess the patient for consideration for hospice admission. The Marie Curie Discharge Planning Nurse may take the lead in achieving a fast track discharge.

In 2009, the team received 675 referrals these are categorised as Macmillan Levels of Intervention.

Table 3: Macmillan Levels of Intervention

Intervention Number of referrals I 103 2 96 3 445 4 0

Patients with a diagnosis of cancer continue to dominate the caseload representing 88%

Table 4: Outcome for patient referrals

Outcome Number of patients Died in hospital 168 Died in Community 265 Discharged into the community and alive 125

The growing use of the Liverpool Care Pathway (LCP) into the hospital has been facilitated by the palliative care team and this has resulted in many straightforward cases no longer being referred to the team.

The response to the Palliative Care Team amongst hospital staff was the generally positive. Staff commented the team are good at identifying the appropriate patients. Staff highlighted the lack of resource and leadership within the team which limited the service available.

The following issues were raised regarding the role of the palliative care team and hospital staffs’ perception:

Issue 8.1/23 There is a lack of resource in the palliative team Issue 8.1/24 More lower grade staff admin teams required to support the staff utilising appropriate skills Issue 8.1/25 The resources in the palliative team reflect and the established competence is an area of speciality dynamics. Issue 8.1/26 Palliative care appears to remain concentrated in cancer services Issue 8.1/27 The ability of the palliative care service to make commitment to regular contact with ward is variable Issue 8.1/28 The resources in the palliative team reflect and the established competence is an area of speciality dynamics. Issue 8.1/29 Understanding of oncology care and palliative care Issue 8.1/30 Not clear when to hand over the care of the patient from oncology to palliative Issue 8.1/31 If the patient has complex requirements they can take up to 3 4 days to

- 60 - be addressed Issue 8.1/32 Cover from the hospice in the last 8 months. There has been a gap in relation to leadership Issue 8.1/33 Trawling the wards is not time effective, reliant on staff to utilise the system. Issue 8.1/34 There are education issues, when to ask for help Issue 8.1/35 Some staff are not aware of the meaning of palliative care and understanding the palliative journey and EOL Issue 8.1/36 People being accessible with the correct skills Issue 8.1/37 Patients and relatives need to know who to contact Issue 8.1/38 Workforce issue, having the right person available Issue 8.1/39 The definition of EOL can cloud things as people have different understandings; patients may or may not be identified as EOL It depends on the quality of the information on the referral Issue 8.1/40 There isn’t a documented referral process Issue 8.1/41 Palliative care never has a high profile in the hospital Issue 8.1/42 There has not been a PC consultant since Nov 2009

The following recommendations were made regarding the provision of specialist palliative care support.

Suggested improvement 8.1/14 There should be more regular education of the LPC Suggested improvement 8.1/15 There needs to be greater resource in the Palliative team Suggested improvement 8.1/16 There a need for education and training in all end of life conditions Suggested improvement 8.1/17 Palliative Care team need to be involved earlier on patient’s admission. Suggested Integral team to be transported across the service so professionals feel improvement 8.1/18 part of the whole pathway Suggested Leadership is key to drive change and improve palliative and EOLC and improvement 8.1/19 to cascade and update the information Suggested If a patient has a surgical intervention they require a seamless service to improvement 8.1/20 palliative care – relies on operating team to refer to next service Suggested Everyone would know where the patient is on their journey and what has improvement 8.1/21 been communicated Suggested Ward staff need support from specialist palliative care team on a faceto improvement 8.1/22 face basis, not only nurse, but junior medical staff as well Suggested In relation to the LCP, staff find discussions with the family and patient improvement 8.1/23 difficult

Communicating with patients and carers

Communicating with patients and carers is an important part of every healthcare professional’s role but discussions around death and dying was reported by many of the staff interviewed at Ipswich Hospital trust as being difficult to instigate or hold. It is the responsibility of the doctors to inform the patient, family carers of the patient’s diagnosis and prognosis. Staff commented that the ability to do this effectively varies greatly.

Interviews with staff highlighted that discussions regarding preferred place of care often do not always take place

At Ipswich Hospital Trust there is a Cancer Information Centre. It is valuable resource for patients and their families. Referrals to the unit are self referrals in person, advice sought over the telephone or a referral from a professional.

- 61 - The unit is open Monday – Friday 08:3016:30. It is staffed by a two nurse specialists (1 WTE) and volunteers. They provide advice on local support groups, benefit advice, disease specific information and how to access services.

Staff highlighted the following issues in relation to communication:

Issues 8.1/43 The ability to break bad news is variable amongst staff Issues 8.1/44 Some areas of communication is more difficult for staff to approach than others Issues 8.1/45 There is a lack of time to allow staff to have frequent contact with patients and their families and carers. Issues 8.1/46 There can be a lack of cultural knowledge and beliefs at times, communication can be an issue with patients from ethnic minorities Issues 8.1/47 Communication is difficult within the dynamics of various team structures Issues 8.1/48 No everyone knows where the patient is on their journey Issues 8.1/49 There is no formal process when to hand over patient Issues 8.1/50 There are overlapping of peoples roles and they are communicating outside their roles.

Staff made the following recommendations in relation to improving communication:

Suggested There is a need to develop collaborative clinics improvement 8.1/24 Suggested There is a need to develop quicker and smarter assessment processes improvement 8.1/25 between health and social care Suggested There is a need to support family / carers after patient's death. improvement 8.1/26 Suggested There is a need to improve the information from the community to improvement 8.1/27 hospital of the patients wishes Suggested There is a need to share patient information improvement 8.1/28 Suggested There is a need for everyone to know where the patient is on their journey improvement 8.1/29 Suggested Clarity is required of who is the leader of the care. improvement 8.1/31 Suggested There needs to be a greater exploration of patient choice and supporting improvement 8.1/32 their choice

Patients dying in hospital

As previously discussed, a large proportion of deaths occur in hospital.

Table 5: The number of deaths at IHT in 2007, 2008 and 2009 3

2007 2008 2009 Total No. Death at IHT 1445 1443 1432 4320 % of all deaths occurring at 26.2% 25.2% 25.5% 25.6% IHT Total of all deaths 5525 5726 5626 16877

This is a difficult time for patients and carers, as well as healthcare professionals. During interviews with staff at Ipswich Hospital Trust many issues were highlighted and strong recommendations made on how to improve things for this group of patients. The Liverpool Care Pathway for the dying patient (LCP) is available in all clinical areas within the hospital. Its use is variable. Data recording at the

3 ONS –Annual district death extract 2007-2009

- 62 - hospital registration office reveals approximately 22% of all 2009 Ipswich hospital deaths recorded documented LCP.

Table 6: Liverpool Care Pathway

Year Number of deaths Number of LPC recorded 2009 1330 301 2010 to date (Sept) 950 189

Within the hospital there is a palliative care link nurse scheme. A nurse from each ward acts as a resource for information and additional support for staff; they are invited to attend the End of Life Group for education and support sessions facilitated by the palliative care team. Generally the LCP has been seen as a positive tool on the wards, especially with the nursing staff. Some wards have information packs on LCP on the wards to offer patients, their families and carers. Several members of staff stated that they felt the way the LCP is used in the hospital was too rigid and not adapted to local or individual needs. Each ward has a number of side rooms and staff commented that where appropriate they try and use the side rooms for patients at the end of life to provide additional privacy at this time, however, it was acknowledged that side rooms are often being used for infection control purposes.

The following issues were raised in relation to patients dying in hospital:

Issues 8.1/51 Staff knowledge of EOL issues is very variable Issues 8.1/52 There needs to a trust wide policy for all staff to implement the LCP Issues 8.1/53 There is a lack of specialist knowledge to support non cancer patients Side rooms are often not available for dying patients as they are being Issues 8.1/54 used for infection control purposes. Issues 8.1/55 Patients are being cared for by staff who do not know them Issues 8.1/56 Families often do not understand their loved ones may die Issues 8.1/57 Staff are not always aware of the DNAR policy Issues 8.1/58 Patients are dying in unsuitable environments Issues 8.1/59 The LPC is constricting to use on all patients Issues 8.1/60 Staff knowledge of EOL issues is very variable Issues 8.1/61 There needs to a trust wide policy for all staff to implement the LCP Issues 8.1/62 There is a lack of specialist knowledge to support non cancer patients

For patients that are dying in hospital, staff made the following recommendations:

Suggested There a need for education and training in all end of life conditions improvement 8.1/33 Suggested There is a need for community specialist palliative support for other improvement 8.1/34 conditions than only Cancer Suggested There needs to be a dedicated team of carers to support rapid discharge improvement 8.1/35 for all areas in Suffolk Suggested More psychological support is needed improvement 8.1/36 Suggested There needs to be a greater exploration of patient choice and supporting improvement 8.1/37 their choice Suggested There is a requirement to have the correct palliative care skills improvement 8.1/38

Discharge

The decision to discharge on the wards is discussed and jointly agreed at multi disciplinary meetings. These meetings usually occur weekly or as required. They are typically nurse and medically led with

- 63 - physiotherapy and occupational therapy input. Additional health care professionals are contacted to attend as required or relevant. Many of the Allied Health Professional also attend the daily ward meetings to keep informed which they two members of staff stated is very useful in supporting the discharge of a palliative or end of life patient home.

The decision to discharge on the admission areas and wards appears complex with several teams involved including:

The Integrated Discharge Planning Team (IDPT)

The IDPT based within Ipswich Hospital comprises Registered Nurses and admin support (employed by SCH) Business Support Staff, Social workers and Community Care Practitioners (employed by Suffolk County Council) and a multi agency Management Team.

The purpose of the IDPT is to facilitate effective patient discharge for patients with complex health and social care needs, the discharge planning nurses’ role is to assess and emphasise clinical need as an integral part of care management, promoting best practice in planning safe and timely discharge.

Referral

The IDPT is available to anyone above the age of 18 years within Ipswich Hospital (and other inpatient units), identified as having complex care needs residing under the care of a Suffolk GP, and that meet the agreed referral criteria. The hours of services are 8.305.30 Monday to Friday (not including bank holidays) Referrals for the services are received from Ipswich Hospital and from any other hospital if the patient’s residing address is within the East of Suffolk PCT There is one referral route into the team via the hospital electronic system and is made by a nurse or doctor. The team receives approximately 450 referrals a month. Where the fast track patient does not meet the CHC criteria4 the care is arranged by the IDPT team.

4 Appendix 11- NHS Continuing Healthcare Pathway CCA and Fast track

- 64 -

Process map 2: Process of Referral to Integrated Discharge Planning Team IHT

The Marie Curie Discharge Planning Nurse (MCDPN)

The Marie Curie Discharge Planning Nurse (MCDPN) is a full time post based at IHT and works Monday to Friday, 8am – 4pm. The post is jointly funded by NHS Suffolk and Marie Curie .The aim of the role if to compliment the existing discharge and palliative care teams and work closely with both to identify patients who may be nearing the end of life phase. The MCDCPN also becomes involved in the fast track continuing care assessment.

The service is Hospital based service but the nurse stated she does work with the discharge liaison nurse at St Elizabeth Hospice around providing support for the NHS continuing care process. They work together with some patients often one starts the process and another completes. The District Nurse takes over at point of discharge however the MCDPN follows up with a phone call and bereavement call for all patients. She has good information access and communication links in order to access information relating to awareness of deaths following discharge.

Referral to the MCDPN

The MCDPN covers all the hospital wards regardless of diagnosis and even if preferred place of care is hospital. Contact is made to the MCDPN by a bleep system. At the point of referral the patient details are confirmed and she splits referrals into urgent (see within 24hours) and complex (see within 72 hours). All the wards have a copy of the referral criteria. She reported ward staff have difficulty identifying patients approaching end of life and frequently refer to her too late. She added ward staff often have a view that patients are too poorly, won’t

- 65 - manage at home and are not aware of what can be provided at home. The staff struggle talking to patients and families regarding what will happen resulting in the patient and family being ill informed. Part of her role is also to ensure the family has all relevant information in order to be able to make an informed choice.

The MCDCP is also involved in the continuing care process which she states is poorly understood and considered an inconvenience by some ward staff. Often continuing care assessments either have not been done or have not been reviewed in a timely manner, she cited examples of ward staff taking 3 weeks to complete NHS CHC documentation when she completes them in a day. The MCDPN identified various reasons for inappropriate admission of palliative care patients and these include failure of care package, lack of access to specialist services, no beds available at the hospice and OOHs GP inappropriately admitting patients.

The staff in the hospital reported many positive remarks relating to the role: • Since the introduction of the MCDPN the discharge process has improved dramatically, particularly with the NHS Continuing Health Care funding process • The Marie Curie Nurse is superb • There are no issues with this part of the process – the Marie Curie ( Discharge Planning Liaison ) works really well

Graph 1: Marie Curie Discharge Liaison Nurse Ipswich Hospital

Marie Curie Discharge Liaison Nurse Ipswich Hospital January - April 2010

35 33 30 25 26 25 23 20 15 10 4 5 Number of Patients of Number 0 Died in Hospital Discharged Home Discharged to Discharged to Discharged to Nursing Home Hospice Community Hospital Discharge Location

Fast Track Funding

In NHS Suffolk an application for NHS CHC funding can also be made utilising the fast track process. The fasttrack tool is completed by the MCDN or another clinician and a recommendation is made which is usually validated by the NHS CHC Team at NHS Suffolk on the same day. If a patient requires a package of care and has been granted NHS CHC funding the MCDPN is responsible for contacting agencies direct to source care. This is carried out after liaison with the NHS CHC Team. Once a provider has confirmed, care can commence in accordance with the plan agreed with the patient, family, carers and supporting agencies.

The PCT has a block contract with Marie Curie Nursing Service which can be accessed by MCDPN, DN’s and some other clinicians. The NHS CHC Team has also identified Domiciliary Agencies and Nursing Homes across Suffolk who are able to provide end of life care for people who meet the eligibility criteria for NHS CHC.

- 66 -

Arranging equipment for a patient going home

Sometimes a patient requires equipment to support and facilitate a safe discharge. Equipment required for discharge is broadly divided between nursing equipment and functional equipment. Nursing equipment is usually items such as hospital beds, pressure relieving mattresses, incontinence pads and syringe drivers. Functional equipment is classed as equipment that aids the patient to carry out the activities of daily living. This includes commodes, raised toilet seats and various aids and adaptations. An occupational therapy assessment is required in order to arrange complex functional equipment for the patient’s home. End of life orders for equipment are made with the request for delivery ASAP, this is generally achieved within 24 hours (Monday to Friday)

If Incontinence pads are required for discharge it is the ward staff who are responsible for supplying at least 7 days of pads and pants and for making a referral for continence assessment electronically via the community services screen on ICP. If the need is for continence assessment in isolation it is faxed to the continence team, if it is part of other needs it goes by fax to the single point of access and from there to the District nurse located at the patients practice. If there is a particular continence problem the DPN will liaise with continence team and undertake an assessment on their behalf to speed the process.

The Discharge planning nurses are part of the Integrated Discharge Planning Team (DPN) based at the Ipswich Hospital. If a client is identified as requiring equipment to facilitate a safe discharge, the ward nurse or indeed any member of the MDT will discuss with the DPN at the ward MDT what needs to be assessed, if the DPN is not present at the ward MDT this need may be communicated by telephone. Community Syringe drivers x2 are held in IDPT and are issued to patients on discharge by DPN’s, replacement stock is then requested via the Ipswich Community Macmillan team. A buffer stock of items is held by the DPN’s (one of the CES satellites), this stock consists of repose mattresses, cushions, foot protectors and catheter bag stands. If an item is issued by a DPN to a client then an on line order to CES is made to replace stock. If any non bufferstock item is required then the DPN would make the order online to CES via the normal channels, it is usual that the DPN would telephone CES to confirm the delivery date and then communicate this to the ward nurses, therapists etc as needed, they may also be talking with relatives to coordinate .

The OT department has:

• 27.45 WTE Qualified occupational therapists • 13.28 WTE Assistant practitioners / assistants

Of which 1.89 WTE qualified and 0.6 WTE assistant staff work within cancer care with the core team based on Somersham ward.

The process for an OT referral is normally identified at the daily ward multidisciplinary team planning meeting. The OT staffs generally identify the patients who need an OT intervention but in some cases referrals are sent electronically by ward staff to the OT Department. There is no waiting list , each case and new referral is assessed daily for a priority and complexity status that provides the information for the OT service to prioritise its daily workload within the available resources for the day. For patients requiring assistive equipment, the OTs are able to issue small aids (such as commodes and toilet seats ) room the onsite satellite store, thus enabling families and patients to take their equipment home from hospital with them. Larger, more complex equipment such as hospital beds, mattresses and hoists are requisitioned from the Central Equipment Store via an electronic requisition form and delivered directly to the patient’s home by the equipment service. The equipment service has performance target of 7 days delivery from date of request and deliveries are broadly categorised into geographical runs across the working week to accommodate this. However, at times, this can cause a delay in accessing this complex equipment urgently in order to support a timely or urgent discharge from hospital.

- 67 - Process map 3: IHT Arranging Nursing Equipment for Discharge

IHT Arranging Nursing Equipment for Discharge

Patient need identified

If patient is identified as requiring equipment to Nursing equipment = hospital facilitate a safe discharge the ward nurse or any Patient identified as bed, pressure relieving member of MDT will discuss what needs to be needing nursing assessed with the DPN at MDT meeting. If DPN isn’t mattresses, incontinence equipment for discharge pads, syringe drivers present at the ward MDT meeting then this will be MDT communicated to DPN by telephone.

2 community syringe IDPT made aware drivers are held in informally CES satellite store within IHT has IDPT for issue to buffer stock of items held by DPNs: patients on discharge repose mattresses, cushions, foot protectors, catheter bag stands

Formal referral to IDPT

Order replacement Is syringe no buffer stock online yes Is equipment Is patient no driver required available from CES incontinent? required? from buffer stock? DPN no yes Request replacement Issue equipment Order non buffer stock stock from Ipswich equipment item online Community Macmillan item from buffer from CES Team stock to patient DPN DPN DPN Refer patient for Supply minimum 7 continence assessment days of pads and via community services pants screen on ICP Is order for ward staff Issue syringe ward staff EOL? driver to patient on discharge DPN Is continence This is assessment required in no there generally Request delivery isolation? achieved asap yes are other within 24 needs hours DPN Fax referral to Fax referral for Mon Fri Continence Team continence assessment to single point of access

ward staff ward staff Telephone CES to confirm delivery date Pass referral on to DN DPN located at patient’s GP practice

single point of access They may Communicate delivery also be date to ward nurses, therapists etc as talking with required relatives to DPN coordinate Is there a particular continence problem? Coordinate delivery with MDT & Family DPN Liaise with continence team and undertake assessment on their DPN behalf Deliver equipment DPN

CES

Incontinence Equipment assessment delivered completed

- 68 - Arranging social care for the patient going home

If a patient is identified by ward staff or other members of the MDT as potentially requiring social care on discharge then a referral to a social worker is made to the social services team based within the IDPT hospital team.

There is one referral route. A referral can come from any ward in Ipswich Hospital and is made by a nurse or a doctor. The ward generates the referral to the team on the hospital system and this comes through directly from the ward onto the team’s printer and these are actioned once administration staff has checked whether the patient is already known to the team. Once they have done this they pass the referral to the assessor attached to the ward the referral originated from. The team receives approximately 450 referrals a month of which include palliative and end of life care. The team work Monday to Friday 8.30 – 6.00 pm they are responding to referrals only during these hours and an Adult Community Service (ACS) OOH service which is an emergency service.

The assessor carries out an assessment of needs as well as determining how needs are currently being met, gathering information from staff and patient/family. One of the first things they need to find out if a patient has been identified as ‘going home to die’ ( the ward will have made a phone call to the team) is whether a fast track continuing health care assessment has been carried out (NHS Continuing Health Care). This is important and should be done in tandem with the care needs assessment. If a patient is eligible for CHC, NHS Suffolk are responsible for the care of the patient and the case moves from the team. Anyone can make a referral for fast track NHS CHC, including the IDPT and it is quite often initiated by the team. If the patient doesn’t meet the criteria for CHC, then care is Adult Community Service responsibility who will then assess the need and carry out a financial assessment. If care is required the social worker will obtain funding authorisation from the manager of the IDPT. This is a usual a speedy process and agreements are completed quickly because of the Delayed Transfer of Care implications. The process is the same for all patients however if a patient is going home to die this is speeded up with direct telephone calls and is usually completed within the same day

A placement in a care or nursing home is arranged if the care needs of the patient are too high to be met at home or this is the patient’s choice or that of the carer/family. Again, the fast track continuing health care assessment has to be completed the social worker will work with the patient/customer and families to identify a home. If someone is eligible for funding through Suffolk County Council (SCC) then the choice and range of homes is smaller than if they are self funding. Eligibility for funding and amount of funding provided by SCC is based on financial assessment. If a patient has more than £23,000 they will be self funding however the team still help with finding a home. The manager of the team stated most care homes try to support their residents when they become End of Life.

Staff reported delays can occur when the family identify a home in a particular geographical area but there is no vacancy.

Case study

Mrs Green lives in Aldeburgh but there are no vacancies in the local Care Homes. There are vacancies in Ipswich but the family/patient does not want to take a placement there. The patient is medically fit and no longer in is needs to remain in hospital .The hospital would like to discharge the patient in an interim placement. Families are put under pressure to move them to the interim placement – usually the family gives in. The family can refuse the interim placement and the hospital can evict the patient.

- 69 - Process map 4: Assessing Need, Arranging Care Package and Arranging Placement in Care or Nursing Home

- 70 - Discharge Audit

An audit was conducted at Ipswich Hospital Trust with the aim to identify barriers to discharge and to understand the reasons for any delays to discharge. This audit was undertaken in the hospital for two weeks between 2nd to 13th August where 20 palliative or end of life patients’, discharge pathways, were tracked. These patients met the qualifying criteria for the audit, which were that, the patient:

• had a prognosis of less than 12 weeks; • be a patient from Suffolk

The process of auditing the patients consisted of gathering data from reading the patients’ medical and nursing notes to obtain information. It also involved reviewing the clinical nurse specialist’s records which are stored separately from the ward records. The nurses, occupational therapists and the physiotherapists on the ward were able to provide information about patients that was not easily accessible from the patient notes.

Of the 20 patients selected, the average age was 73. Years, 12 had a cancer diagnosis and 3 had a diagnosis of a respiratory disease, 2 had heart disease and the others were stroke, renal failure and Parkinson’s disease Many of the patients were also suffering from a number of other co morbidities. The patients came from a range of wards in the hospital.

Other findings for 17 patients selected (3 remain in hospital): . • Outcomes of admission were: 5 patients died at Ipswich Hospital; • 3 patients were discharged home; • 1 patient was discharged to a Nursing Home • 1 patient was discharged to a community hospital.

13 out of the 18 patients had delays in their discharge

• The average length of stay was 22.7 days

A Case Study of a palliative care patient that was examined under the audit and highlights some issues that have emerged in relation to their admission, treatment and discharge.

Case Study

A 90 year old male who lives alone was admitted to hospital following collapsing at home after being generally unwell. He was admitted into the ward via an ambulance transporting him to A and E

Following investigations he was diagnosed in heart failure and after a week in hospital he expressed a wish to go back to his home. A referral was made to the Social Worker where his family expressed their concerns due to his previous refusal to accept carers in the past and the fact his condition was deteriorating with an HAI .2 days following this meeting the consultant discussed with the family that he was at the end of his life and between them they agreed palliative care. No referral was made to the Specialist Palliative Team, no application for CHC funding was made or placement on the LCP.

This male deteriorated further and died, he was in hospital for 13 days

- 71 - All cases examined in the audit are presented in an Annex 1 shows a summary of the main barrier to discharge, length of inpatient stay; days that the discharge was delayed by, place of discharge and social circumstances.

The list of issues below covers the overall process of discharge:

Equipment

Issues 8.1/63 Sometimes there are delays with obtaining equipment the Central equipment store Issues 8.1/64 Sometimes vital equipment is not available. Issues 8.1/65 There is no urgent turnaround times for access to equipment Issues 8.1/66 Sometimes there are delays because of equipment

Packages of care

Issues 8.1/67 Domiciliary care is difficult to provide in rural areas. Issues 8.1/68 The sticking point is often getting carers Issues 8.1/69 The length of time to complete the documentation can cause delay Issues 8.1/70 There are delays when the packages are large and complex The assessor has the write up the assessment of the patient in the Carefirst6 (the ACS System) and then it has to be authorised, this can Issues 8.1/71 take time Social Care and Health are not as integrated as they could be if someone Issues 8.1/72 needs to go home

Care home placements

Issues 8.1/73 Families identify a home in a particular geographical area but there is no vacancy Issues 8.1/74 There is a service gap for palliative care patients who are not at end of life Issues 8.1/75 A home with high death rates is assumed a "poor home" Issues 8.1/76 Families are put under pressure to move patients to the interim care home placement Issues 8.1/77 Waiting for vacancies in Care Homes

Continuing healthcare assessments

Issues 8.1/78 Staff do not prioritise the CHC documentation Issues 8.1/79 The NHS CHC documentation is a lengthy process Issues 8.1/80 The continuing care process is poorly understood and considered an inconvenience by ward staff. Issues 8.1/81 Continuing Healthcare assessments are not done in a timely manner Issues 8.1/82 Relatives are confused between the inconsistency of the timing of the processes utilised by staff Issues 8.1/83 At the moment the Marie Curie Nurse does the Fast Track CHC Assessment, she is leaving an there will be a gap Issues 8.1/84 Since the Marie Curie Discharge Nurse left there has been a gap in service; noone has the paperwork or knowledge to Fast Track Issues 8.1/85 Not enough carers in rural areas to support patients going home – readmissions occur when care packages are reduced Issues 8.1/86 Ward staff can be reluctant to complete the CHC form because of the administrative time required and there is no longer a Marie Curie Discharge Nurse on site to do this for the ward staff for the palliative

- 72 - patients Issues 8.1/87 Time taken to complete the assessment form for CHC, the DST and obtaining the required funding approvals Issues 8.1/88 There are delays in discharge when arranging a social care package Issues 8.1/89 CHC not completed as well or as frequently since the Marie Curie Discharge Nurse left, ward staff may not complete the checklist due to work pressures which causes a delay Issues 8.1/90 CHC is a long process to complete Issues 8.1/91 CHC is a long process to complete and can take up to two weeks

Coordination

Issues 8.1/92 There should be more flexibility in the Discharge Planning team role Issues 8.1/93 There should be more information available of how to access services in the community Issues 8.1/94 The discharge planning team could be more proactive Issues 8.1/95 There should be more advanced planning Issues 8.1/96 Services are very complex and disjointed Issues 8.1/97 Lack of Coordination between professionals Issues 8.1/98 Some partnership organisation relationship could be more seamless and improved

Communication

Issues 8.1/99 There is a concern by staff that there are too many meetings which affects their capacity to prioritise case load Issues 8.1/100 The ability to break bad news is variable amongst staff Issues 8.1/101 Some areas of communication is more difficult for staff to approach than others Issues 8.1/102 There is a lack of time to allow staff to have frequent contact with patients and their families and carers. Issues 8.1/103 There can be a lack of cultural knowledge and beliefs at times, communication can be an issue with patients from ethnic minorities Issues 8.1/104 Communication is difficult within the dynamics of various team structures

Issues 8.1/105 No everyone knows where the patient is on their journey Issues 8.1/106 There is no formal process when to hand over patient Issues 8.1/107 They are overlapping of peoples roles and communicating outside their roles. Issues 8.1/108 Lots of mixed communication – breakdown in communication Issues 8.1/109 Community and GP’s don’t communicate very well Issues 8.1/110 Not database to share notes in hospital, home and hospice, no system in place to share information Issues 8.1/111 PPC is documented and there is no compliance Issues 8.1/112 Delays occur where there has been a breakdown in communication

Provision of community care

Issues 8.1/113 There is a feeling of lack of confidence to discharge in that often families

- 73 - have different care workers and not convinced handover is robust Issues 8.1/114 There are a lack of nursing homes in the East of Ipswich and the A12 west side for palliative care Issues 8.1/115 The RRT lack capacity to support end of life care Issues 8.1/116 No follow up in the community Issues 8.1/117 Does not appear to be enough specialists, such as Macmillan Nurses to provide support at home Issues 8.1/118 Families don’t have the insight as to when to contact the Macmillan Nurse Issues 8.1/119 Complex discharges don’t occur as frequently over a weekend due to more limited support services available in the community

Accessing hospice beds

Issues 8.1/120 Hospice process need to change, they assess too late delay & then need day services Issues 8.1/121 There is a need to revise the assessment process of the hospice. Issues 8.1/122 Limited opportunity for IHT patients to access cancer rehabilitation service reliant on community teams / hospice to provide this. Issues 8.1/123 Faster track into day care from hospital into hospice services required. Issues 8.1/124 Cancer journey is not understood and patients are not referred properly

Patients and carers

Issues 8.1/125 Families are put under pressure to accept interim placements on behalf of the patient Issues 8.1/126 Families’ expectations are too high. Issues 8.1/127 Families expectations cannot be met

Transport

Issues 8.1/128 Timing of transport is a challenge when waiting and coordinating equipment. Issues 8.1/129 Transport problem in hours and out of hours, to facilitate rapid discharge then hospice bed available can’t transfer quickly Issues 8.1/131 If transport is needed after 6.00pm this can be difficult and cause delays.

General Discharge

Issues 8.1/132 TTAs for fast track are difficult due to the system and new Drs learning the system. Issues 8.1/133 The hospital does not discharge many end of life patients home. Issues 8.1/134 The discharge process is not robust Issues 8.1/135 There is not enough Marie Curie Discharge Nurses Issues 8.1/136 There is no Pre end of life stage for certain conditions such as Brain Tumour patients. Issues 8.1/137 There is a lack of resources to allow increased follow up/contact to support the families Issues 8.1/138 A problem area in care of the elderly is the unpredictable and therefore it is difficult to come up with precision Issues 8.1/139 The supporting services such as the OT do not operate a 7 day service Issues 8.1/140 Not a pathway to discharge patients Issues 8.1/141 DN referrals can be forgotten when the patient is discharged meaning the patient has no support in the community setting Issues 8.1/142 Marie Curie discharge Nurse on site to fast track discharge planning and enabling patients to achieve PPC

- 74 - Issues 8.1/143 There is a vacancy now the Marie Curie Discharge Nurse has left Issues 8.1/144 No permanent business support or admin to support the team

Assessment and Care planning

Issues 8.1/145 Advance Care planning – never seen one

During interviews with staff and the audit process the following recommendations for improvement were made and have been themed as follows:

Coordination

Suggested improvements 8.1/39 The vacant MCC Nurse post needs to be recruited to Suggested improvements 8.1/40 There is a need to review the OT service hours to cover 7/7 Suggested improvements There is a need to work locally and regionally on pulling the 8.1/41 patient's rehabilitation pathway together.

Communication

Suggested improvements Introduce Communication Facts Sheet – fax out to DN’s and 8.1/42 Macmillan Nurses from team and provide all information about the patient

Provision of community services

Suggested improvements There is a need to develop an in reach service to support early 8.1/43 discharge for palliative and end of life care. Suggested improvements There needs to be a resource to support the elderly who live 8.1/44 alone Suggested improvements 8.1/45 Improve the OOH response to end of life patients Suggested improvements 8.1/46 Same day response required to support discharge Suggested improvements 8.1/47 Resource H@H carers from NHS CHC Suggested improvements There should be an in reach model from the Community 8.1/48 Matron

Equipment

Suggested improvements 8.1/49 Quicker access to equipment is required Suggested improvements Provide a telephone / answer phone for Marie Curie Discharge 8.1/50 Nurse

Quality of Care

Suggested improvements Advanced care plans for all eligible patients needs resources 8.1/51 of provision, this should be started in 100% of care Suggested improvements 8.1/52 Develop a shared universal PPC documentation Suggested improvements 8.1/53 PPC should also be started in 100% care

- 75 - Medication

Suggested Formalise a pre emptive prescribing pack improvements 8.1/54

Education

Suggested Educate GPs to more improved communication improvements 8.1/55

- 76 - Table 7: Ipswich Hospital Trust - Discharge audit - summary

Discharge Audit- Patient 1 Patient 2 Patient 3 Patient 4 Patient 5 Patient 6 Patient 7 Patient 8 Patient 9 Patient 10 summary of cases In-patient stay in 9 days 3 days 9 days 61 days 7 days Remains Remains 10 days 10 days 18 days days in hospital in hospital at time of at time of completing completing audit audit

Delays in 1 day N/A 2 days 2 days 2 days No 3 days 3 days discharge in anticipated days date recorded Main barrier to Waiting for Waiting for Waiting for Waiting for Waiting for Spent w/e Waiting for Waiting for discharge hospice respite hospice hospice hospice at home hospice bed hospice bed bed hospice bed bed bed bed during Required 10/7 high period support Other barrier to Awaiting Patient Condition Required Applied Awaiting No NHS CHC discharge review by requested a fluctuated symptom for NHS social application palliative shower in control fast track assessment care team her home Preferred place Hospice Not Hospice Hospice Hospice or Home Home Home Not recorded of care recorded NH

Actual Place of Hospice Home Home Hospice Hospice Hospice Hospice Died in Hospital discharge For interim period

Social Lives with Lives with Lives in Lives alone Married Lives Lives Lives with Lives alone Lives alone circumstances wife husband sheltered flat Wife alone alone wife and Divorced Estranged from Ground supported by wanted daughter Ground floor wife floor flat daughter patient flat home

- 77 - Specialist Ward Oncology Respiratory Oncology Respiratory Oncology General Oncology General Urology Oncology Surgery, Surgery Upper GI and Gastro.

Table 8: Ipswich Hospital Trust - Discharge audit - summary

Discharge Patient 11 Patient 12 Patient 13 Patient 14 Patient 15 Patient 16 Patient 17 Patient 18 Patient 19 Patient 20 Audit- summary of cases In-patient stay 55 days 24 days 20 days 5 days Remains in 24 days Remains in 42 days 13 days 26 days in days Transferred hospital at hospital at from time of time of hospice completing completing audit audit Delays in 4 days Anticipated Anticipated 19 days Anticipated 2 days 2 days discharge in discharge discharge discharge Family days date not date not date not concerned recorded recorded recorded regarding future care Main barrier to Waiting for Mencap CHC check Did not Awaiting Recording Referral Transport as discharge hospice home list not discuss/consider CHC of process below. bed unable to completed discharge process discharge support MOT notes process in EOL list for ICAT notes bed indicates no key coordinator Other barrier No NHS Patient Medical Discharge Awaiting 05.08 Discharge to discharge CHC unable to notes process ICAP bed recorded in arrangements application understand inconsistent No dates or goal setting had to fit with concept of recording reference discharge families illness to list notes availability referral required to Social worker.

- 78 - Preferred Home Was not Nursing Nursing home Nursing Not Not Not Not recorded place of care asked Home Home recorded recorded recorded Actual Place Hospice Hospice Hospital Community Community Not Died in Died in Home of discharge Hospital Hospital recorded Hospital Hospital Social Lives with Lives alone Lives alone Nursing home Not Nursing Lives with OPH Lives alone Lives alone circumstances wife and recorded Home husband daughter Specialist Oncology General Complex Medical Respiratory Complex Complex Complex Complex General Ward Surgery, Upper Care of Care of Care of Care of Care of Surgery GI and Gastro. Elderly Elderly Elderly Elderly Elderly

- 79 -

8.2 West Suffolk Hospital Trust

West Suffolk Hospital Trust is an acute general hospital situated in the west of the county of Suffolk the majority of people accessing services at the hospital (YDH) are residents of West Suffolk and boarder counties. The hospital is planning to become a NHS Foundation Trust and has an application in consideration. The hospital has 458 beds, including a 6bedded ITU, Macmillan Unit that offers specialist palliative care to patients with cancer and difficult symptoms; it provides a chemotherapy unit, outpatient suite, inpatient beds and a dropin information centre. The hospital also has an emergency assessment unit and a stroke unit with 24 beds ring fenced for stroke patients.

Information regarding the delivery of end of life care and the admission and discharge processes in West Suffolk Hospital were collected using the following methodologies:

• Audit: • Emergency admission audit within the hospital by the Urgent Care Transformation Team during 9th 16th June 2010. • Discharge audit of palliative and endoflife patients within the hospital during 19th – 30th July 2010

• Focus Group: • The Palliative Care Team Clinical Nurse Specialists (“CNS”) • Discharge Coordinator Team • Haematologists and CNS

• Interviews with: • Consultants in the hospital, including Consultants in the care of the elderly, oncology, respiratory and haematology. • The Chaplain • The Occupational Therapy Service Manager. • The Physiotherapy Senior Manager • The Speech Therapy Service Manager • Marie Curie Discharge Planning Nurse. • The Patient Affairs Officer • Cancer Nurse Specialist • Senior manager on behalf of Macmillan Unit nurses • Social Worker Manager and team member

• Short telephone interviews with:

• EAU Coordinator • The Information Centre manager

• Process Mapping:

Positive comments, issues, challenges, and suggestions for improvement raised by hospital staff are presented at the end of the subsections to which they relate.

Please note that issues and challenges highlighted by staff may be individual perceptions rather than an organisational view or policy. Issues are also highlighted from the audit.

- 80 -

Admission

Patients can be admitted to the wards in WSHT from the Emergency Department (“ED”), the Emergency Assessment Unit (EAU), and Out Patient Clinics or transferred from another ward or hospital. Patients attending ED either self present are brought in by ambulance or are advised to attend by a GP. For patients that attend the ED, staff have 4 hours to assess the patient and make a decision regarding treatment. The options are:

i) Further assessment is required; ii) Admission to a ward; or iii) Treat and discharge the patient home without admission.

Process map 1 - West Suffolk Hospital Patient Flow In and Out of EAU WEST SUFFOLK HOSPITAL Patient Flow In and Out of EAU

Potential patient need for EAU

Referral by GP Referral from A&E (90% via Referral from OPD A&E;10% direct)

Patient admitted to EAU and assessed (LOS 0 4 days)

Patient transferred to specific ward

Trauma & Cardiac Other Ward Orthopaedics

Patient discharged from hospital

If patients require further assessment they can be transferred to the EAU. The EAU has 24 beds and 12 chairs, takes admissions from the ED, GP referrals and Out Patient Clinics. Patients are assessed within 45 minutes of arrival to the unit followed by completion of a treatment plan by a doctor. There is a Consultant based within the unit during the operational working times of 08.00 – 20.00 hours, although some patients remain in the unit over night. The Unit coordinator stated the aim is to limit the stay of patients on the unit to no more than 24 hours, although occasionally this is breached. There is no electronic system of recording patient notes; the paper copy notes are readily available with no delays.

The Palliative Care Team and the Marie Curie Discharge Facilitator occasionally see patients in both ED and EAU. The Palliative Care Team report when they are called to assess a patient to see if they can support to avoid admission and can discharge home. The unit has good links with the local hospice for transfer for patients at the end stage of life.

- 81 -

Staff highlighted the following issues in relation to the admission of palliative care patients:

Issue 8.2/1 Residential nursing homes do not have enough support to care for patients at the end of their lives

Issue 8.2/2 Patients come into A/E as a readmission due to family crisis

Issue 8.2/3 Assumption can be made of what the patient wants, relatives want the best care – variable care –cancer patients often make choices where other conditions are not given those opportunities e.g. Alzheimer and Dementia

Issue 8.2/4 Families are unprepared for the dying stage

Issue 8.2/5 If someone is sent home to die – patient may change their minds and no skills in community to deal with consequences

Issue 8.2/6 Patients often get frightened or change their mind and choose to come back to hospital

Issue 8.2/7 There is a lack of links for communication.

Issue 8.2/8 There is a lack of specialist care to advise about change of medication following discharge

Issue 8.2/9 There is variable communication between agencies

Issue 8.2/10 Out of hours service lacks local knowledge of access to community services

Issue 8.2/11 Palliative care in the community is variable in out of hours

Issue 8.2/12 Carers do not receive early intervention or recognition

Issue 8.2/13 Complex patients – pressure from the family to admit, again could be resolved by community

Issue 8.2/14 Patients come into A/E as a readmission due to family crisis

Issue 8.2/15 Don’t get feedback from GP’s – leap of faith that well cared for

Issue 8.2/16 Palliative care advice available on symptoms but not regarding patient choices

Issue 8.2/17 Community GP’s don’t have access to all information if patient has been in hospital Issue 8.2/18 Patients often get frightened or change their mind and choose to come back to hospital

Staff made the following recommendations in relation to the admission of palliative care patients:

Suggested improvement 8.2/1 Develop awareness of what is available in the community to support patients and carers to enable PPC.

Suggested improvement 8.2/2 Increase in community palliative care team

- 82 -

Suggested improvement 8.2/3 There should more availability of hospice beds for patients in the trust

Suggested improvement 8.2/4 There is a need for available 24/7 care for people that live alone Suggested improvement 8.2/5 More collaboration of social workers across agencies

Suggested improvement 8.2/6 There is need to increase knowledge about end of life drugs

Suggested improvement 8.2/7 There is a need for a seamless service

Suggested improvement 8.2/8 There is a need for services to have a flexible approach

Suggested improvement 8.2/9 There is a need to receive information of the hospice bed state

Suggested improvement 8.2/10 There is a need for an alternative environment for palliative patients to go instead of A and E Suggested improvement 8.2/11 There is a need to support Nursing Homes to allow residents to die in the home Suggested improvement 8.2/12 There needs to be less bureaucratic processes in end of life pathway Suggested improvement 8.2/13 There should be rotation working with staff in the community/acute Suggested improvement 8.2/14 Communication of clear plans and what the DN’s can and can’t do Suggested improvement 8.2/15 Rapid Discharge, need to send home on same day

Suggested improvement 8.2/17 Preparation of relative for caring

Suggested improvement 8.2/18 Triage Macmillan Nurse

Suggested improvement 8.2/19 Team links within the hospital and community staff

Suggested improvement 8.2/20 One off home visit

Suggested improvement 8.2/21 Transitional approach

The Early Intervention Team

A multi professional team of Nurses, Physiotherapists, Occupational Therapists and Assistant Practitioners provide health, function and social care assessments, treatment and intervention to prevent unnecessary admission to hospital.

Based within the Emergency Departments of Ipswich Hospital and West Suffolk Hospital, and accessed via the hospital pager system, the team receive referrals from Emergency Department, EAU and Fracture Clinic for patients who are deemed medically fit and do not require acute hospital care, but have a reduction in function due to their presenting condition. This may be an injury following a fall such as a fracture, an infection or an exacerbation of an existing medical condition resulting in a change in function.

- 83 -

Following assessment, the team supports discharge back to the home setting by providing short term rehabilitation and equipment to support function. Should there be a need for long term rehabilitation; a referral is made to the Local Healthcare Team.

If following assessment the patient is not functionally fit for discharge, the team will liaise directly with the relevant hospital team, sharing assessment information to prevent repetition and promote a timely discharge. The team will follow the patient for up to 7 days to offer continuity and support reduction on the patient’s length of stay. The challenge stated by a member of staff is this process reduces the availability of staff to cover the front door of the hospital.

Table 1 - EIT activity

Team Measure Apr-10 May-10 Jun-10 Jul-10 Aug-10 West Total number of 58 65 52 48 64 Referrals

Emergency Admissions Audit

As part of the East of England QIPP programme, NHS Suffolk launched a major review of urgent care in December 2009. 5This review, the findings and recommendations, informs and supports this report. During 2010 admission 9th16th June activity was reviewed to obtain evidence to support care alternatives. The audit considered potential outcomes to support delivery of system wide standards relating to:

• Patient safety and clinical quality • Delayed transfer of care • Delivering choice of place of death

The audit recorded all admissions into Emergency admissions to AMU via GP and A&E and a total of 212 patients were tracked of which 128 patients were 65years and over; 9 were classified as palliative of which 6 were over 65 years of age.

Table 2 - Source of Admissions

Source of Admissions Number

GP 4 ED 3 Unknown 2

Collated in this activity were palliative care referrals for symptom control. The results of the review identified issues in accessing alternative provision and approximately 30% of the total presenting cases could potentially be prevented.

Case Studies

End of life

An 82 year old female with COPD was admitted from a Nursing Home providing the patient

Elderly / frail / social

70 year old Mrs C admitted 09/06/10 with end stage exacerbation of COPD and constipation. Frequent flyer – admitted 05/03/10, 16/04/10, 09/05/10 all with SOB. On admission Mrs C had pressure sore on buttock. Lives at home, has 11 hours direct payments for lunch call and AM & PM care to assist with personal care. Notes did not indicate input from District Nurse, COPD team, Community Matron or MacMillan. Patient notes at 13/06/10 “Await Care Package”. - 84 -

End of life – no care package An 83 year old male, with terminal cancer of oesophagus. Pain free, but ‘off legs’ with BP 60/40. Patient lives alone but no care package in place, not eating due to cancer & need for puree diet

The audit review team identified issues for all representatives of the urgent care system in accessing alternative provision to support admission avoidance e.g. knowledge/information about what is or not available and how to access it. They stated in the report evidence from the review highlights the need for enhanced services in the community to support right health and social care in the right place at the right time. The services could be either enhanced by way of easier access or enhanced by way of availability.

Palliative Care within the hospital

The West Suffolk Hospital Specialist Palliative Care Team has the role to ensure that all patients, carers and staff in the West Suffolk Hospital NHS Trust with specialist palliative care needs are assessed, supported and cared for appropriately. The Team also provide education throughout the hospital and work with health care providers in the community to ensure continuity of care for palliative care patients entering and leaving the hospital.

Team Members

The core members of the Specialist Palliative Care Team are as follows:

• 0.6 WTE Consultant in Palliative Medicine, MDT Lead Clinician • 0.6 Clinical Nurse Specialists in Palliative Care • 0.93 Clinical Nurse Specialists in Palliative Care • 0.45 Clinical Nurse Specialists in Palliative Care • 0.8 WTE Practice Development Nurse – End of Life Care. • 0.8 Team Secretary

All patients on the current caseload of the Specialist Palliative Care Team are discussed at a weekly MDT meeting; outpatients are discussed as appropriate. The team offers an approach to improve the quality of the life of patients and their families through offering services of prevention, assessment and treatment of pain and other physical, psychological and spiritual problems. They work closely with hospital and primary care doctors, nurses, the chaplaincy team and other health care providers involved in the care of the patient.

The Team accepts referrals from a range of sources – staff, health care professionals, patients and carers, by contact with team members or leaving details on an extension number. (Answer phone, out of hours) The team works Mon to Friday during core hours 9 am – 5 pm

In 2008/9 the team saw 544 patients of which 467 were new referrals, the team aims to see referred patients within 2 days however the average time from referral to patient seen was less than a half a day.

Table 3 - Reason for Referral

Reason for Referral: Patients may be referred for more than on 2008/9 reason Symptom control 392 Psychological support 261 Family support 275 Social support 19

- 85 -

Spiritual care 19 Terminal care 147 Hospice referral 18

Discharge of the patients remains the responsibility of the doctors and ward nurses. For straightforward discharges, the Palliative Care Team may not always be involved. In complex cases, the Palliative Care Team are able to offer advice, information and emotional support to the patient, family and carers, arrange Community Macmillan support, and liaise with medical teams to review medication to take home. The Marie Curie Discharge Planning Nurse works closely with the team and may take the lead in achieving a fast track discharge. The response to the Palliative Care Team amongst hospital staff was positive and comments included:

• A very good service • The team are good at communicating • Always come when called

The growing use of the Liverpool Care Pathway (LCP) into the hospital has been facilitated by the Practice Development Nurse member of the palliative care team.

Table 4 - Numbers of patients on LCP

Year Number 2008/9 281 2009/10 317

Each ward has a palliative care link nurse and the team facilitates 4 link nurse meetings a year. The ward link nurse acts as a resource for information and additional support for other ward staff members.

The following issues were raised regarding the role of the palliative care team and hospital staffs’ perception:

Issue 8.2/19 Complex morbidity patients who are much more difficult – limited support – each speciality has to be used and therefore no key person

Issue 8.2/20 There is lack of resource to cover the hospital, the palliative team of nurses’ offer support but patients’ conditions can be complicated and a senior level of expertise is needed. Senior level of expertise is required to support and advise the palliative care nursing team when patients conditions are complicated

Issue 8.2/23 There is limited service out of hours.

Issue 8.2/24 Many patients get many investigations and treatments than is necessary – as patients may not be known to other areas – oncologists find it easier to early discharge planning/before patients in too long.

Issue 8.2/25 There is a lack of resources in the community Issue 8.2/26 There is lack of carer support in the home Issue 8.2/27 There is not always a live in carer available Issue 8.2/28 Challenges at weekends when OOH are not around Issue 8.2/29 There is a lack of knowledge of the carer at a weekend and during OOHs

- 86 -

Issue 8.2/30 PPC is not always adhered to and sometimes the patient is not always asked what they want. GP’s do not ascertain the patients PPC

Issue 8.2/31 PPC rarely travels with the patients Issue 8.2/32 Problem with the flow of notes / paperwork / PPC Issue 8.2/33 In elderly patients other needs are often identified Issue 8.2/34 Patients are sent home with extra equipment and there is no support

Issue 8.2/35 Difficult to identify the last 4 – 6 weeks for Fast Track funding approvals to occur Issue 8.2/36 There are no discharges on a weekend Issue 8.2/37 Transport – no ambulance home Issue 8.2/38 Frontline communications can be tricky for staff Issue 8.2/39 Differing views of palliative – conflict over best interest Issue 8.2/40 LCP – not all specialities adhere to the process and are reluctant to commence LCP Issue 8.2/41 Getting junior doctors to see and understand end of life issues is a learning requirement Issue 8.2/42 junior doctors are frightened to prescribe certain medications such as opiates for respiratory patients Issue 8.2/43 Transport – end of life appears to take less priority and often left to the end of day Issue 8.2/44 Referrals to specialist team take up to 2 days and a quicker response is needed Issue 8.2/45 It is difficult to access EOLC for respiratory patients Issue 8.2/46 Hospice gives priority to community patients Issue 8.2/47 Lack of provision of specialist palliative care in the hospital, the service is stretched Issue 8.2/48 Lack of privacy on wards, there are no side rooms for families, usually taken for infection cases Issue 8.2/49 Carers – not common for carers to have crisis identified

The following recommendations were made regarding the provision of specialist palliative care support.

Suggested improvement 8.2/22 There needs to be less bureaucratic processes in end of life pathway

Suggested improvement 8.2/23 There is a need for quicker access to specialist palliative care

Suggested improvement 8.2/24 There is a need for 24 hour access to specialist palliative care

Suggested improvement 8.2/25 Easy access to hospice care required, there is a strict criteria, therefore not likely to refer Suggested improvement 8.2/26 Skills needed to deal with patients and family concerns, patients often get frightened or change their mind and come back to hospital

- 87 -

Suggested improvement 8.2/27 Links for communication are required

Suggested improvement 8.2/28 Dedicated spaces / room for patients to have discussions

Suggested improvement 8.2/29 Education is needed to address the issues with junior doctors prescribing opiate medications for respiratory patients Suggested improvement 8.2/30 Specialist access to palliative care 24/7

Suggested improvement 8.2/31 Increased community services

Suggested improvement 8.2/32 Specialist knowledge required

Suggested improvement 8.2/33 Increased Macmillan services

Communicating with patients and carers

Communicating with patients and carers is an important part of every healthcare professional’s role including discussions around death and dying. It was reported by many of the staff interviewed at West Suffolk Hospital trust, the ability to do this effectively varies greatly. One interviewee stated conversations at the end of a patient’s bed was not uncommon. It is the responsibility of the doctors to inform the patient, family and/or carers of the patient’s diagnosis and prognosis and nursing staff reported that junior medical staff found it challenging.

Interviews with staff and the audit highlighted that discussions regarding preferred place of care often do not always take place or indeed if they have occurred this is not subsequently recorded or communicated creating additional difficulties.

At West Suffolk Hospital Trust there is an Information Centre that is specific for cancer although the service will signpost. It is valuable resource for patients and their families and is open at core hours with some outreach services rotating once a month in various areas. The manager commented that staff from other specialities than cancer rarely used the centre.

Staff highlighted the following issues in relation to communication:

Issue 8.2/50 Lack of continuity of information between professionals , therefore problems occur with communication to the patient and families

Issue 8.2/51 Difficult issues especial regarding resuscitation is often avoided

Issue 8.2/52 Skills of nurses to deal with conversations with patients, relatives and families varied.

Issue 8.2/53 It is not always documented or discussed why the patient remains in hospital and speech therapist would like to be more active in the process

Issue 8.2/54 Sometimes patients leave the ward without ward staff notifying the team and this means communication is delayed with the discharge destination. Issue 8.2/55 Not aware of anyone being told of prognosis, often told in clinic

- 88 -

Issue 8.2/56 Often patients have not taken on board the information relating to diagnosis and prognosis and are followed up by the Specialist Palliative Care Team

Staff made the following recommendations in relation to improving communication:

Suggested improvement 8.2/34 Skills of nurses to deal with conversations with patients, relatives and families require development.

Suggested improvement 8.2/35 There is a need for increased awareness of the MC Discharge Nurse role in all specialities

Suggested improvement 8.2/36 Palliative care education is required for all grades of staff Quicker completion of discharge summaries required Suggested improvement 8.2/37 There is a need to receive information of the hospice bed Suggested improvement 8.2/38 state Suggested improvement 8.2/39 There is a need to increase more specific information to families and carers on discharge of patients at end of life

Suggested improvement 8.2/40 More sharing of information in an integrated manner There needs to be less bureaucratic processes in end of life Suggested improvement 8.2/41 pathway Suggested improvement 8.2/42 Skills of nurses to deal with conversations with patients, relatives and families require development. Suggested improvement 8.2/43 There is a need for increased awareness of the Marie Curie Discharge Nurse role in all specialities

Patients dying in hospital

As previously discussed, a large proportion of deaths occur in hospital.

Table 5 - Number of deaths at WSH 2007, 2008 and 2009 6

2007 2008 2009 Total No of deaths occurring at 858 846 817 2521 WSH % of all deaths occurring at 15.5% 14.8% 14.5% 14.9% WSH

This is a difficult time for patients and carers, as well as healthcare professionals. During interviews with staff at West Suffolk Hospital Trust many issues were highlighted and strong recommendations made on how to improve services for this group of patients.

The Liverpool Care Pathway for the dying patient (LCP) is available in all clinical areas within the hospital and generally the LCP has been seen as a positive tool on the wards, especially with the nursing staff. Its use however is variable particularly in the non cancer wards. Several members of staff stated that they felt the way the LCP is used in the hospital was too rigid and not adapted to local or individual needs occasionally restricting choice.

Staff reported that they often were competent in dealing with the dying process and families were well supported but not with actual death. The process after death was acknowledged as an area where families received little support. Each ward can no longer guarantee the use of side rooms for

6 ONS – Annual District Death Data Extract 2007 - 2009 - 89 - dying patients due to infection control issues and staff reported that patients often die on a busy acute ward which is an unsuitable environment for the patient, family and carers.

The following issues were raised in relation to patients dying in hospital:

Issue 8.2/61 Some practitioners are frightened to prescribe certain medication e.g. morphine to respiratory patients

Issue 8.2/63 Mac Unit lovely place and patients do come in to die “does the patient/family now have this right?”

Issue 8.2/64 If patients die on an acute ward it is not always possible to place the patients in a side ward in order to give patient, family carers and staff more privacy.

Issue 8.2/65 More support for families pre and after death regarding counselling and bereavement services are required

Issue 8.2/66 Communications with patients and families is not always timely when discussing end of life issues this may relate to the unpredictability of a condition and making a firm diagnosis.

Issue 8.2/68 Patients who want to die in hospital, not feasible to keep an acute bed

Issue 8.2/69 Some patients feel safer in hospital but can’t accommodate

For patients who are dying in hospital, staff made the following recommendations:

Suggested improvement There needs to be greater awareness, understanding and 8.2/47 prompter use of the LCP

Suggested improvement There is a need for a culture to embed the LCP in all areas of 8.2/48 the hospital environment

Suggested improvement There needs to be a cover OOH for speech therapy 8.2/49 Suggested improvement There needs to be prompter recognition of requirement of 8.2/50 spiritual needs

Suggested improvement There is a need for more support for families pre and after 8.2/51 death Suggested improvement Out of hours register office access is required 8.2/52 Suggested improvement There is a need to raise awareness for all staff to recognise 8.2/53 PPC

- 90 -

Hospital Chaplaincy Service

There is a Chaplain Service that covers the West Suffolk Hospital, Wedge Wood House and Walnut Tree hospital in Sudbury, for in patients and very occasionally involved with out patients. The service is regardless of patient’s faith or belief.

The following issues were raised in relation to Chaplain Services:

Issue 8.2/57 There is only a paper system available in the hospital for use by this service. Issue 8.2/58 There needs to be training for the volunteers to use the electronic systems – the advantages would be making contact with ministers in the community Issue 8.2/59 It is unreasonable to work a full week and on call as aims to offer a 24/7 service There is an acknowledged limitation with regard to resources availability.

The following recommendations were made:

Suggested improvement Contact would be preferred sooner rather than later; if the 8.2/44 system is working the team should not be called at the very end Suggested improvement Working more closely in MDT for EOLC, often put in boxes 8.2/45 Suggested improvement Building relationships 8.2/46

Discharge

The decision to discharge on the wards is usually the responsibility of the medical team, namely the consultant and usually based upon the patient being medically fit for discharge, however it was noted by staff that this is not the criteria for an end of life patient. MDT planning meetings usually occur weekly or as required. They are typically nurse and medic led with physiotherapy and occupational therapy input. The weekly meetings offer an opportunity to discuss in detail complex issues.

Many of the MDT who also attends the daily ward meetings to keep informed, two members of staff stated the usefulness in supporting the discharge of a palliative or end of life patient home.

The discharges are categorised into simple and complex.

Simple discharges were the responsibility of the ward staff and facilitated by the ward nursing staff or discharge coordinator. They were categorised as simple because the discharge involves minimal disturbance to patients’ activities of daily living and does not prevent return to their usual place of residence. Referrals to the community nurses by fax via a single point of access before 4 pm, one ward identified this delays discharges.

Complex discharges are either facilitated by the nurse led discharge team and /or the Social Worker. These were discharges that involved primary and secondary services and the Patients Flow Team (PFT) assists in the management and planning of the patients discharge. There was some evidence that the leadership of the coordination of the pathway for discharge of palliative and end of life patients was not understood by all staff,” Consultants often think the PFT deals with all the patients discharge requirements”.

- 91 -

In a bid to reduce the length of stay of patients, hospital staff have been encouraged to consider discharge planning on admission and document details in patient records.

Marie Curie Discharge Nurse

Discharging a patient home who has palliative care needs or is at the end of life often requires a great deal of coordination; several sources commented that the rapid discharge pathway has improved since the introduction of the Marie Curie Discharge Planning Nurse (MCDPN). Previously the pathway had been used 17 times in the past 2 years. A consultant stated that this pathway works well when used. There is only one MCDP in the hospital and therefore no cover for the absence of this role. The Discharge Planning holds the bleep during this gap of service.

The MCDPN is a full time post covering the hours of 09.00 to 17.00 hrs and the aim of the role if to compliment the existing discharge and palliative care teams and work closely with both to identify patients who may be nearing the end of life phase and support the discharge when the PPC is not the hospital. The MCDPN has assisted the local hospice with continuing care assessments .She contributes to education programmes and LCP days. The MCDPN stated that patients who are commenced on the LCP are rarely discharged from the hospital due to families who do not feel it is appropriate to move the patient if they have not expressed a choice. If the PPC is unknown before the patient comes into hospital the nurse described the difficulty in working with families who have had no experience in caring for very unwell people with a hospital culture where there is a belief that the patient is to unwell to go home.

Referral to the MCDPN

Referral is made by anyone in the hospital and she is invited to attend all the MDT s which she cannot physical achieve due capacity. Once a patient is referred she will get background information from the ward, palliative and the discharge plan team if they are involved. The notes re reviewed and the patient is usually seen within 24hours or immediately if the patient is for rapid discharge.

There are some patients that the MCDPN do not see and it has been reported that on occasion members of the medical profession consider keeping the patient in hospital is the best option.

Case Studies

A male patient on a Cardiac ward was advised by a Consultant that he would go to a nursing home and be brought back to the hospital for the end of his life stage.

Patient at the end of her life stage was expressing his wishes to go home, he had been granted fast NHS continuing health care funding. The patient son said his mother had to stay in hospital. This was a very difficult situation for the MCDPN to manage and the patient ultimately died in hospital.

- 92 -

Graph 1 - Activity of discharge location January to April 2010

Marie Curie Discharge Liaison Nurse West Suffolk Hospital - January to April 2010

30 26 25 20 18 15 13 10 5 2 2

Number Number of Patients 0 Died in Hospital Discharged to Discharged to Discharged to Discharge to Home Care Home Hospice Community Hospital Discharge Location

Graph 2 - PPC

Preferred Priorities of Care January To April 2010

45 42 40 35 32 30 25 20 15 10 5 0 Number of Patients Who Expressed Their Number of Patients Who Achieved Priority of Priority of care Care

This evidence suggests an approximately 67% of patients referred to the MCDN were documented in the MCDN notes in comparison with 50% from the audit. The MCDN refers to the hospice only when the PPC is not evident.

- 93 -

Process map 2 - WSH Rapid Discharge Home Pathway for the Dying Patient West Suffolk Hospital: Rapid Discharge Home Pathway for the Dying Patient

Unplanned Discharge

MDT meeting convened within 1hr Key Worker

Communicate with family Key Worker

Complete CHC form Key Worker

Liaise with medical staff who Contact GP contact GP Key Worker Medical Staff

Contact specialist

Key Worker

Liaise with ward Arrange transport staff Key Worker Ward Staff

Collate/complete documentation incl. DNAR Ward Staff

Liaise with Provide support Palliative Care and information to Team family Key Worker Pall. Care Team

Organise TTOs

Key Worker

Liaise with community teams re equipment DPT

Arrange care package Social Care

- 94 -

Hospital Discharge Co-ordination Team

West Suffolk Hospital has Discharge Coordination Team based within the hospital. They are a service that operates between 08.00 – 16.00 hours, Monday to Friday

The team consists of:

• 1.69 FTE Band 7 Nurses • 4.77 FTE Band 6 Nurses • 0.8 FTE Home finder • 0.53 FTE Band 2 Admin. Support

All the team members are attached to different wards and also support each other if their workloads are large. The group stated that most of their work was with the NHS Continuing Health Care process. They are experts who understand the NHS CHC process and support to provide evidence to submit success patient supporting information.

Referrals

The team receive referrals verbally in direct contact or via bleep attention. They attend the daily MDT ward meetings to pick up and monitor the progress of patients. They have good relationships with the ward care coordinators, the specialist palliative team and attend the palliative care MDT weekly meetings and the palliative care link group. Members of the group explained it was often emotionally difficult to work with relatives to support them to understand that the patient can make choices and often relatives see their roles as advocates. It was suggested by a group member that a patient advisory service maybe be helpful in these situations.

The hospital has an OOH discharge policy:

Process map 3 - WSH, Discharge Out of Hours

West Suffolk Hospital: Discharge Out of Hours

Patient, relative, carer agree date & time of discharge

Services required Transport If urgent oncall Named person Duty social worker confirmed and in arranged via pharmacist called given to patient, contacted as place if patient patient flow team via site? clinical relative, carer necessary lives alone bleep practitioner

Patient is discharged and transported home

- 95 -

Process map 4 - WSH, Arranging a Continuing Health Care (CHC) Package of Care

- 96 -

Discharge Audit

An audit was conducted at West Suffolk Hospital Trust with the aim to identify barriers to discharge and to understand the reasons for any delays to discharge. This audit was undertaken in the hospital for two weeks between to 19th July to 30th July 2010 where 20 palliative or end of life patients’, discharge pathways, were tracked.

These patients met the qualifying criteria for the audit: which were that the patient:

• had a prognosis of less than 12 weeks; • was a patient from Suffolk

The process of auditing the patients consisted of gathering data from reading the patients’ medical and nursing notes; it also involved reviewing the clinical nurse specialists’ records which are stored separately from the ward records. The nurses, occupational therapists and the physiotherapists on the ward were able to provide information about patients that was not easily accessible from the patient notes.

Of the 20 patients selected, the average age was 82 Years, 6 had a cancer diagnosis and 5 had a diagnosis of a stroke, and the others were respiratory, renal failure and Parkinson’s disease. Many of the patients were also suffering from a number of other co morbidities. The patients came from a range of wards in the hospital.

Other findings for 18 patients selected (2 remain in hospital):

• Outcomes of admission were: 5 patients died at West Suffolk Hospital; 6 patients were discharged home; 5 patients were discharged to a nursing home; and 1 patient was discharged to the local hospice care. • out of the 18 patients had delays in their discharge • The average length of stay was approximately 27 days

The following is a case study of a palliative care patient that was examined under the audit and which highlighted issues that emerged in relation to their admission, treatment and discharge.

Case Study

A 73 year old female who lives with her husband was admitted, via her GP to hospital following increasing shortness of breath. She was admitted into the ward via an ambulance transporting him to A and E. She had a primary diagnosis of Cancer of the breast and was known to the community services. Two and a half weeks following admission the hospital social worker acknowledged that the patient had declined to take part in the Continuing Healthcare application process and therefore the social worker left customer first contact details for the patient and her family. A month after admission the patients condition further deteriorated and was referred to the palliative team .A meeting was held with the family where the family expressed the patients wishes that she was afraid of dying and wished to stay in hospital, they agreed palliative care and 3 days later she was commenced on the Liverpool pathway and died within 24 hours. She was in hospital for a total of 46 days.

Table No: 6 Shows a summary of the main barrier to discharge, length of inpatient stay; days that the discharge was delayed by, place of discharge and social circumstances.

- 97 -

Arranging equipment for discharge

Sometimes a patient requires equipment to support and facilitate a safe discharge. Equipment required for discharge is broadly divided between nursing equipment and functional equipment. Nursing equipment is usually items such as hospital beds, pressure relieving mattresses, incontinence pads and syringe drivers. Once a patient has been assessed as requiring nursing equipment either by the ward staff or other members of the MDT; the responsibility for organising the equipment is the Discharge Planning Team, for patients in Suffolk the DPT nurse can order equipment electronically, the nurse does not require authorisation.

There is no access to speed up delivery times for patients who are at end of life stage. It was reported that it was often difficult to obtain answers to inform families of actual delivery times, sometimes equipment arrives and families or staff are not aware, other discharge requirements have not been coordinated. Fridays are identified by staff as a particular difficult day to get patients home. For patients who live across the borders of Norfolk and Cambridgeshire the MDT member directly telephones the District nurse of requirements.

Case Study

End of life A patient required a hospital bed to be delivered at their place of discharge. No information was received who would put the bed together and remove the old bed; this made coordination of a timely discharge difficult

Functional equipment is classed as equipment that aids the patient to carry out activities of daily living. This includes commodes, raised toilet seats and various aids and adaptations. An occupational therapy assessment is required in order to arrange complex functional equipment for the patient’s home.

The occupational therapists receive formal referral as well as screening new patients who arrive on the ward, it was stated that another frequent source of referral was from the MCDN and the palliative team. Functional equipment can often be accessed via satellite stock held at the hospital if the families are able to take to the patient home. Other requirements are ordered via the central store by an electronic method .The delivery dates are different for different areas in Suffolk and the arrangements are for the central service to communicate direct with the families or carers’ Authorisation is required by the OT or larger pieces of equipment such as beds.

Arranging transport for discharge

Patients discharged from West Suffolk Hospital are encouraged to make their own transport arrangements. Patients who are unable to organise their own transport due to extreme social circumstances or due to their medical condition, are able to access transport services from the trust. Patient Transport Services (PTS) or Ambulance services are provided by East Anglia Ambulance Trust. The process is the same for fast track/rapid response and nonfast track discharges. Others services that require arranging for the patient may result in delays to the transport service and staff reported,

“Even if transport is booked, the patient still has to wait for medication, equipment and care package. There was a rapid discharge a couple of weeks ago: the patient left at 7 or 8 at night. The process started at lunchtime, with the patient identified as needing a fast track discharge.”

- 98 -

Process map 5 - WSH, Process for Organising Transport

West Suffolk Hospital: Process for Organising Transport

- 99 -

Hospital Social Worker Discharge Team

West Suffolk Hospital has a social services team based within the hospital. The team’s hours of operation are:

• 08:45 – 17:20 hours on Monday – Thursday, • 08:45 – 16:20 hours on Friday

The team membership consists of:

• 1 Team Manager – 37 hrs • 3 Senior Practitioners – 55.5 hrs • 1 Senior Practitioner (Vacancy) – 18.5 hrs • 5 Social Workers – 170 hrs • 1 Social Worker (Vacancy) – 37 hrs • 7 Community Care Practitioners – 227 hrs • 1 Business Support Manager – 30 hrs • 4 Clerical & Admin support – 87.5

Support to the hospice

The team has an identified palliative and end of life lead social worker who covers St Nicholas Hospice. If the social worker is on leave the duty social worker responds. During the period of June to August 2010 the team received twelve referrals. The team only takes referrals if the customer has no named worker in the community. Response time is normally within twenty four hours and care is arranged for patients in the hospice and reviewed by the community team after discharge in a matter of days.

A member of staff stated she felt that the discharge process was often slow and there was a sense of not letting people go. The hospice often does not refer to the Social Worker and do not commence the CHC process until after discharge. It was felt this was because of the skill mix at the hospice with few trained staff in proportion to untrained and the hospice often give the reason that they haven’t enough trained staff to complete the forms. Both trained/untrained staff in social work completes the CHC decision tool. The hospice have a few trainee staff in proportion to untrained and often give the reason that they have not got enough trained staff to complete the forms.

Arranging social care for discharge

If a patient is identified by hospital ward staff or other members of the MDT as potentially requiring social care on discharge then a referral to a social worker is made. A referral is made to the health and social team by completing a section 2 (social services referral) form, “it has been stated that this does not occur in all areas over the borders of Suffolk”

This will be sent to the office within the hospital electronically via email and entered onto the Social Services database. The date and time of the input is recorded. If the patient is already known to a community social worker this will be flagged up at this point however all the assessment processes are carried out and remain the responsibility of the hospital team. The social worker will then carry out an assessment of the patient and the response time for the assessment is usually within 24 /48 hours although there are occasions when MDT members will advise that the patient is not fit for discharge. The ACS Health Team Manager is responsible for receiving the notifications on behalf of ACS and is also responsible for noting any changes in the patients’ readiness for discharge.

Following a social work assessment it may be decided that a patient requires a package of care to support them at home or a placement in a care home is required. If a package of care is required the social worker will draw up a care plan and order to the appropriate care in coordination with the Home First team in social services. This is an enablement service

- 100 -

If Home first has not the capacity to provide the service required the team emails a purchase order to the Social Services central Local Purchasing Officers to source the care required. The time to organise the care varies according to need, rural location and choice of nursing home. Not having resources put timely in place can sometimes be an issue a member of staff gave an example; “today, a patient needs to be discharged but the care won’t be in place until tomorrow. If the family are happy to support the patient for a day without the care in place then they can go home otherwise the patient has to stay another night. Last month a patient had to stay another day for this reason. This isn’t a huge issue but does affect EOL patients”

It was noted that it is not clear where the PPC is documented and the patient is often assessed by of two organisations with differing patient assessment processes which inevitably results in the patients delay in discharge.

When the patient is medically fit to be discharged a section 5 is issued; following receipt of this form, the team has a further 72 hours to provide care before the patients is recorded as an official transfer of care delay. (Assessment and Notification under the Community Care (Delayed Discharges) Act). There is not a policy between the West Suffolk Hospital and Adult Community Services around section 2 & 5 notifications but they do have an agreement covering the Community Care (Delayed Discharges) Act. Notification arrangements are set out in the agreement as follows: “The Patient Flow Team Manager from the Acute Trust has responsibility for ensuring Section 2 & 5’s are issued and that the Trust notifies ACS if a patient’s readiness for discharge changes i.e. becomes unwell or requires further acute care Concern was expressed by a social worker of the lack of recording of the completion of the documentation”. Any further details concerning the notification for assessment under section 2 & 5 these are referred back to the guidance & procedures in the “Assessment and Notification under the Community Care (Delayed Discharges) Act for people in acute medical beds”.

- 101 -

Process map 6 - WSH, Arranging a Social Care Package of Care

If a patient requires a care home placement the family or next of kin are encouraged to view the appropriate home. A financial assessment of the patient is carried by the assessor to establish if Suffolk County Council funded or self funding. Once the care home has been chosen, the matron from the care home will visit to assess the patient in hospital to ensure they are able to meet their care needs.

Following discharge the social worker will carry out a telephone check to review the package of care or care home placement two weeks after discharge and will then hand the care over to the local community team for review.

The list of issues below covers the overall process of discharge and has been themed as follows:

Equipment

Issue 8.2/70 If patient is known to a Macmillan nurse, the equipment appears to be delivered quicker no equity Issue 8.2/71 Replacing patients beds at home delays discharge

- 102 -

Issue 8.2/72 Only basic equipment available for rapid discharge Issue 8.2/73 There is no acknowledgement from the equipment company when equipment will be delivered

Packages of care

Issue 8.2/74 There are no updates on the discharge planning stages Issue 8.2/75 There are delays in organising packages of care due to lack of carers in the rural settings Issue 8.2/76 Package not swift when organising in less than 24 hours for patients who chose to die at home Issue 8.2/77 Can’t predict a 24 hour rapid discharge Issue 8.2/78 Don’t get feedback from GP’s – leap of faith that well cared for

Care home placements

Issue 8.2/79 There is some reluctance for residential homes to receive patients back for end of life care. Issue 8.2/80 Night care and social support required 24/7 for people who require and if they live home alone Issue 8.2/81 It is difficult to find carers in the rural areas Issue 8.2/82 Nursing home discharges require improved communication Issue 8.2/83 Issue with some discharges to Nursing Homes – no smooth transition to the community Issue 8.2/84 Always delays in discharging of require a new nursing home

Case Study

Patient went home to a Nursing Home and was readmitted later that day to another hospital who had no prior information or patient details – the patient died that day

Continuing healthcare assessments

Issue 8.2/85 There is inconsistency in the time required to complete a full CHC assessment Issue 8.2/86 CHC funding is usually applied for under fast track rules, delay in discharge can result in discharge if not awarded Issue 8.2/87 There is a lack of consistency. Issue 8.2/88 Patient is often lost in the middle of the CHC process.

Coordination

Issue 8.2/89 There is lack of coordination in discharge planning with pharmacy Issue 8.2/90 The teams involved in discharge sometimes duplicate

Issue 8.2/91 There is a lack of Specialist palliative team members with specific skills in LTC to support medication discharge decisions Issue 8.2/92 There are delays in delivering packages of care –if less than 24hours notice. Issue 8.2/93 The completion of the patients records is inconsistent

- 103 -

Issue 8.2/94 No support is offered for patients with new equipment when discharged

Communication

Issue 8.2/95 DNAR requires communication with transport

Issue 8.2/96 Sometimes patients leave the ward without ward staff notifying the team and this means communication is delayed with the discharge destination. Issue 8.2/97 There is often no formal recording of patient wishes regarding preferred place of care

Provision of community care

Issue 8.2/98 There are issues with NH supporting end of life patients Issue 8.2/98 There is a lack of local knowledge of available services Issue 8.2/99 There is a lack of consistency to the approach in the community to receive patients back on Fridays Issue 8.2/100 Often GPs do not visit e.g. with breathlessness and advised to call an ambulance Issue 8.2/101 There is a lack of awareness by staff regarding community services available Issue 8.2/103 Palliative care in the community is variable Issue 8.2/104 It is difficult to access end of life care in the community for respiratory patients Issue 8.2/105 OOHs GP’s are often readmitting patients without even seeing them also there is a lack of local knowledge of patient and services and therefore no continuity of service Issue 8.2/106 Long time required to get needs of social work in situ for patients wanting to go home to die

Accessing hospice beds

Issue 8.2/107 The hospice often full up. Issue 8.2/108 It is an impression that community takes priority over acute patients wishing to go to hospice Issue 8.2/109 WSH Day patients find it difficult to access hospice bed Issue 8.2/110 Easier access to hospice care required Issue 8.2/111 Lack of clarity of available beds at the hospice. Issue 8.2/112 Some patients want to go to hospice especially if day patient and they can’t get in Issue 8.2/113 The hospice can’t guarantee to admit to die Issue 8.2/114 Never hospice beds Issue 8.2/115 Hospice bed availability – there are issues for assessing for beds – impression that community take priority over acute patients waiting to go to hospice

Patients and carers

Issue 8.2/116 Anxious families often change their mind. Issue 8.2/117 There is lack of consistency in communication with families Issue 8.2/118 Safety issues often interfere with patients allowed to have their choice to go home Issue 8.2/120 There is lack of support for families when the patients condition changes - 104 -

Issue 8.2/121 Problems with carers who change their mind about the arrangements made.

Transport

Issue 8.2/122 Patients who are end of life appears to take less priority and often left to the end of day Issue 8.2/123 Access to transport is a concern for staff. Issue 8.2/124 Staff, family and carers need to be advised of transport times. Issue 8.2/125 DNAR requires communicating with the transportation of end of life patients

General Discharge

Issue 8.2/126 Patients on the LCP are less likely to go home Issue 8.2/127 Doctors are not completing discharge summaries promptly Issue 8.2/28 There is no clarity why the patient remains in hospital and speech therapist would like to be more active in the process Issue 8.2/129 Always delay in discharging if require new nursing home even if palliative and not end of life. Issue 8.2/130 More information of the M.C. nurses role in the community required. Issue 8.2/131 There appears no urgency in discharging none cancer patients

Medication

Issue 8.2/132 End of life drugs, anxiety occurs when patients are sent home to die and are sent with standard drugs – there is a lack of specialist palliative care support and knowledge

From the interviews with staff in addition to information gathered through the audit process the following recommendations for improvement in relation to discharging patients were made:

Coordination

Suggested improvement 8.2/56 Ownership of the CHC requires embedding into the end of life environment Suggested improvement 8.2/57 There is a need for increased awareness of the MC Discharge Nurse role in all specialities Suggested improvement 8.2/58 There is a need to increase the MC discharge nurse resource Suggested improvement 8.2/59 More collaboration of social workers across agencies Suggested improvement 8.2/60 There is a need to develop a robust CHC Discharge process Suggested improvement 8.2/61 Quicker completion of discharge summaries required Suggested improvement 8.2/62 Coordination of all services involved with the discharge process required Suggested improvement 8.2/63 More sharing of information in an integrated manner Suggested improvement 8.2/64 There is a need for a seamless service Suggested improvement 8.2/65 Prioritisation for TTOs of end of life patients

Provision of community services

Suggested improvement 8.2/66 Develop awareness of what is available in the community to support patients and carers to enable PPC. Suggested improvement 8.2/67 Increase in community palliative care team Suggested improvement 8.2/68 There needs to be better access to CHC for palliative

- 105 -

patients who are not Fast track Suggested improvement 8.2/69 There is a need for available 24/7 care for people that live alone Suggested improvement 8.2.70 Night care and social support required 24 / 7 for people who require

Support for patients and carers

Suggested improvement 8.2/71 There needs to be a cover OOH for speech therapy Suggested improvement 8.2/72 There is a need for services to have a flexible approach Suggested improvement 8.2/73 There is a need to increase more specific information to families and carers on discharge of patients at end of life

Care home placements

Suggested improvement 8.2/74 Nursing home discharges require improved communication

Training and Education

Suggested improvement 8.2/75 There is a requirement for further training and awareness of the CHC process Suggested improvement 8.2/76 Greater awareness is needed of the speech therapist role. Suggested improvement 8.2/77 There is a need to raise awareness for all staff to recognise PPC Suggested improvement 8.2/78 There should be rotation working with staff in the community/acute

Packages of care

Suggested improvement 8.2/79 There is a need to review the rapid discharge policy

Transport

Suggested improvement 8.2/80 There is a need to improve the availability and timeliness of equipment and transport Suggested improvement 8.2/81 There is a need for end of life patients to take priority

Access to hospice beds

Suggested improvement 8.2/82 There should more availability of hospice beds for patients in the trust Suggested improvement 8.2/83 There is a need to receive information of the hospice bed state

Speech Therapists

Referrals

The adult Speech and Language Therapy service covers the same area as NHS Suffolk, encompassing both community and acute hospitals with in the east and west of the county and is available Monday to Friday, 08.30 – 17.00 hours. There is no on call system and there is an acknowledgement of an unmet need.

- 106 -

The speech therapy service supports all patients at the WSH with dysphagia (swallowing difficulties) with a team that consist of clinical membership as follows (August 2010):

• 0.6 WTE Band 7 • 0.8 WTE Band 6 • 1.4 WTE Band 5

The acute team members cover all the wards at the hospital including the stroke ward. Other clinical staff (both hospital and community based) in the West of the county share administration staff, and some clinicians work across both acute and community venues. This setup supports the patients discharge into the community as a seamless process. There is a separate, additional service/ward cover for patients who have communication problems as a result of a stroke. If a patient has communication problems that are not a stroke related, an advice only service can be given, from the clinical resource for inpatients with swallowing problems.

It was noted that the service is contracted to respond to new referrals within two working days. However if the patient is referred on Friday there may be a wait until the Monday to be seen which is not always ideal as patients can have nutrition and hydration problems, e.g. if Nil By Mouth over weekend.

The acute hospital service receives approximately 60 new referrals per month from all wards for individuals with swallowing difficulties with 6 patients’ who maybe palliative or at end of life stage at the point of referral. Many patients can become palliative which means the nature of the S.L.T. input alters according to patients needs. Of the 60 many can become palliative patients – there is a feeling there is a lot more Speech Therapist could offer patients for example:

• End of life decision making • Expert swallowing advice • Speed up discharge • Outline strategies to carers to meet the patients needs • Support end of life communication for the patients of their wishes

Case Study

This is a Cancer patient example – there were questions as to whether the patient required further surgery and these decisions and discussions occurred by the professionals involved at the end of patient’s bed. The Speech Therapist was able to support the patient to understand and award the patient the opportunity to express their wishes and choices and to provide support to enable the patient to enjoy the end of their life e.g. enjoys a small drink.

There are a number of patients who the Speech Therapy team are involved with who often stay in hospital to die. It was noted that reasons can be unclear as to “why the patient remains in hospital and the speech therapists would like to be more active in the process.”

It was reported that presently 68 patients on a rehabilitation ward are expected to require palliative care with complex medical needs. The status of the patient fluctuates and there are no specific plans are in situ, although reasons are not clear. Within the team there is a culture of trying to do more for the patient although it is recognised that family issues may make the situation more complex.

The following issues were raised:

Issue 8.2/133 Professionals were discussing and taking decisions at the end of patient’s bed. Issue 8.2/134 Indepth understanding is required that patients, families need time to make decisions – development is required of skills for all professionals. - 107 -

Issue 8.2/135 There is a culture of trying to do more for the patient. Issue 8.2/136 No on call system for speech therapy Issue 8.2/137 If referred on Friday patients can wait until the Monday which is not always ideal – patients can have nutrition and hydration problems, e.g. if NBM over weekend. Issue 8.2/138 No set process to assess for end of life patients, normally specialist clinical skills utilised – not clear how more specific palliative care template would alter practice given individual variability. Issue 8.2/139 There are sometimes issues with supplying ‘thickener’ which is added to drinks to help patients with swallowing problems. Not always seen as essential or prioritised but can significantly impact on patient safety as reduces risk of aspiration

Suggested recommendations for improvements in relation to the Speech Therapy service

Suggested improvement 8.2/85 There is a need for cover OOH for speech therapy Suggested improvement 8.2/86 Greater awareness is needed of the speech therapist role.

- 108 -

Table 6: West Suffolk - Discharge audit - summary

Discharge Audit-summary Patient 1 Patient 2 Patient 3 Patient 4 Patient 5 Patient 6 Patient 7 of cases In-patient stay in days 10 33 16 1 13 46 37

Delays in discharge in 1 day 24 days 6 days None Expected None 19 days days discharge date not recorded recorded or any please refer indication in notes to PPC Main barrier to discharge None Yes oxygen delivery Had to wait for TTO written Please Did not wish to Recorded at a time the relatives bed at 15.50pm refer to return back to can be at the persons PPC home home as both relatives worked.

Other barrier to discharge None No Delay occurred fine, ordered N/A CHC process and Recorded due to infection in the oxygen awaiting funding ward.

Preferred place of care Home Home Not discussed No Not recorded Hospital Yes daughter requested not to Actual Place of discharge Home Nursing Home Home Home Nursing Home Deceased Nursing Home in hospital Social circumstances Lives with Lives alone Lives with wife Lives alone Lives alone Married Lives alone husband known to District Nurse Specialist Ward Macmillan Respiratory + NIV Respiratory + Macmillan Respiratory + NIV Macmillan Acute Stroke & Unit NIV Unit Unit Rehab Stroke Unit

- 109 -

Table 7: West Suffolk - Discharge audit - summary

Discharge Audit-summary Patient 8 Patient 9 Patient 10 Patient 11 Patient 12 Patient 13 Patient 14 of cases

In-patient stay in days 61 Null and void 55 7 18 19 22

Delays in discharge in 7 days Null and void 34 days 1 day Sudden death 11 days 10 days days Main barrier to discharge PPC not own Null and void Difficult to predict Awaiting for Did not qualify Ongoing Families choice home End of life stage, equipment to be for fast track discussions of Nursing Home commenced on delivered CHC with family and LCP 34 days their wishes prior to death Other barrier to discharge CHC process Null and void As above N/A None Meds delay in and awaiting Recorded request but not funding obtaining. Two days delay in fast track CHC process due to family choice

Preferred place of care Nursing Home Null and void Not recorded Home Not recorded Home Not recorded

Actual Place of discharge Nursing Home Null and void Deceased in Home Deceased in Nursing Home Home hospital hospital Social circumstances Lives alone Null and void Lives with Lives with wife Not recorded Lives alone Lives alone Husband Specialist Ward Acute Stroke Null and void Acute Stroke & Macmillan Unit Medical Medical Medical & Rehab Rehab Stroke Stroke Unit Unit

- 110 -

Table 8: West Suffolk - Discharge audit - summary Discharge Audit-summary of Patient 15 Patient 16 Patient 17 Patient 18 Patient 19 Patient 20 cases In-patient stay in days 28 21 31 Null and void 14 52

Delays in discharge in days Medically fit 13.07 N/A 23 days Null and void 5 days N/A

Main barrier to discharge SPNC does not recommend fast No Section 5 Null and void No clear Not medically fit track at 02.07.2010 06.07.2010 recording of invalid at time reason for until 20 days after recommend completing CHC discharge of forwarding delay of PDD decision to Fast Track 21.07 plan to Social Care discharge and application supported

Other barrier to discharge None Recorded A/A N/A Null and void Not recorded Did not qualify for fast tract CHC therefore process commenced

Preferred place of care Home Not Not recorded Null and void Nursing Home Not recorded recorded Actual Place of discharge Home Died in Died in Null and void Home Hospice Hospital Hospital Nursing Home

Social circumstances Sheltered accommodation Lived with Lives with wife Null and void Nursing home Lives alone wife

Specialist Ward Medical & Infection Control Acute Acute Stroke & Null and void Rehabilitation Respiratory + NIV Stroke & Rehab Stroke Rehab Unit Stroke Unit

- 111 -

8.3 Suffolk Mental Health Partnership NHS Trust

Suffolk Mental Health Partnership provides mental health, substance misuse, learning disability and an eating disorder services across Suffolk and Thetford. The service operates from over 60 sites across Suffolk Mental health services for adults and older people living in Suffolk (excluding Waveney) Suffolk Mental Health Partnership NHS Trust provides expert mental health, learning disability and substance misuse services to people in Suffolk. The organisation is considering plans to become a foundation trust by merging with Norfolk and Waveney Mental Health NHS Foundation Trust. There is a consultation running from 6th August to 31st October 2010.

Information regarding the delivery of end of life care for patients with mental health problems was gathered using the following methods:

Interviews with:

• SLA meetings with senior managers • Learning Disabilities Manager

Focus Group with:

• Assistant Ward Manager, Service Manager, Senior Practitioner Social Worker, Practice Development Nurse, Community Psychiatric Nurse working within Later life Services Community and Inpatient areas

Services Include:

• Community and Inpatient Care for Adults • Child and Adolescent Community Care • Substance Misuse Services • Inpatient and Community Learning Disability Services

Inpatient facilities are based in Bury St Edmunds and Ipswich; the inpatient services are being extensively rebuilt and upgraded in a multi million pound project that will include new wards providing fit for purpose accommodation to deliver quality care.

St Clements Hospital

St Clements Hospital is the central base for trust services for adults and older people in east Suffolk. The hospital site contains inpatient wards. There are also local community teams. Westgate ward is an admission and assessment ward that provides support to people with depression, anxiety and also dementia

Community Services

Most people who have mental health problems are supported by primary care services, people who need more specialised support can be referred to their local CMHT. The Community Mental Health Teams [CMHTs] are based in the following towns:

• Newmarket • Haverhill • Sudbury • Bury St Edmunds • Thetford • Stowmarket

- 112 -

• Ipswich • Kesgrave [for Felixstowe / Wickham Market]

As well as CMHTs, there is a range of specialist community teams, such as those supporting people who are experiencing drug or alcohol problems in addition to mental health problems, people who have memory problems, people with eating disorders, or people who have come into contact with the criminal justice system

The CMHTs have an important role in supporting service users, families and carers. They provide assessment, treatment and support for the majority of people with moderate to severe mental illness in the community. The service works with interpreting services, local community and voluntary sector services to enable wellbeing and recovery to progress. They aim to provide equity of service to all Suffolk residents regardless of age, race, culture, sexual orientation or gender. Care is planned using CPA (care programme approach) and is individually tailored to meet the needs of the individual and their family carer.

Intermediate Care

Mental health intermediate care supports people who have a diagnosis of dementia to stay at home, the team works closely with other health and social care professionals to meet the complex needs of this group.

Crisis Resolution and Home Treatment

The team provides a rapid response to crisis' 24 hours a day, 365 days per year. They support relatives, carers and social networks to resolve the crisis in the least restrictive way possible, with the aim to prevent hospital admission. Referral is via professionals only.

Learning disability services

The Trust provides specialist health care services for people with learning disabilities for adults of 16 years and over who in addition or due to their learning disability have:

• mental illness and other mental disorders, such as autism; • challenging or disturbed behaviour; • epilepsy, which cannot be managed by general neurology services

There are a number of teams within the service including:

• Specialist Health Team which consists of Community Nurses who have specialist training and experience in working with individuals who have a learning disability. The team supports individuals with a learning disability to develop and maintain skills which can help them improve their health and well being. They also work with families and carers in the following areas • Intensive Support Team provides specialist services. The Team consists of nurses, a speech and language therapist, a psychologist and clerical support. The Team support adults with learning disabilities and challenging behaviour and offers specialist assessment, treatment and advice. It also supports their carers. The service is provided mainly in the central and east part of the Trust. • Assessment and Treatment Unit provides inpatient care in two six bedded units. The units are staffed 24 hours by qualified nurses and care staff who provide acute inpatient

- 113 -

care for adults who have a learning disability and mental ill health or any other problems associated with their learning disability. The service is available to anyone who lives in Suffolk. Adolescent service supports young males between the ages of 14 and 18, who have a Learning Disability, challenging behaviour and mental health difficulties. The service aims to provide rehabilitation and therapeutic support on an individual basis. • Children’s respite service providing respite for children with learning disabilities and related health care needs • Adult resident units providing care for elderly residents with learning disabilities and other continuing healthcare needs

The following issues were highlighted by staff:

Admission prevention

Issue 8.3/1 Homes that care for Mental Health residents do not have the staff with skills to maintain the person to die at home Issue 8.3/2 There is a need to coordinate care between health services Issue 8.3/3 LD patient mostly attends A&E for first line service Issue 8.3/4 Most crises occur in OOHs and people are admitted to acute hospital. Greater expertise MondayFriday, 95pm. Less experience staff OOHs, less support.

Palliative Care

Issue 8.3/5 There is a great deal of difference in the treatment LD patients will get in comparison with those who are not impaired Issue 8.3/6 Most of the help was through goodwill directed from the hospice

Issue 8.3/7 Conditions are often difficult to predict the end of life Issue 8.3/8 Staff have no specialist skills to deal with end of life care Issue 8.3/9 Less experienced staff in the OOHs.

Communication

Issue 8.3/10 MH Community staff are rarely involved in the GP GSF meetings at practices. Issue 8.3/11 LD patients more frequently have physical symptoms that are life threatening which are difficult to verbalise and communicate

Dying in Hospital

Issue 8.3/12 Medical staff do not have knowledge on end of life drugs Issue 8.3/13 In the community, difficulties arise and the HH team has to be an advocate for one person. An individual can be receiving terminal/end of life and have been referred for psychiatric support as suicidal – as risk adverse situation. Ending up with diagnosis in psychiatric and is not helpful for patients. Issue 8.3/14 Staff working in later life a skill is required in dealing with death.

Continuing healthcare assessments

Issue 8.3/15 Lack of partnership working with other services. Issue 8.3/16 No fast track for MH CHC

- 114 -

Patients and carers

Issue 8.3/17 Support to families is not cohesive Issue 8.3/18 One of the main challenges is how the client understands the treatment Issue 8.3/19 Staff skills vary to support the carers Issue 8.3/20 There is not enough timely support to carers Issue 8.3/21 Families are unaware of supporting services that are available Issue 8.3/22 Carers are exhausted and therefore cannot have there loved ones home Issue 8.3/23 Patients become medicalised

Information

Issue 8.3/24 Huge amount of information that is not always relevant

Equipment

Issue 8.3/25 Equipment is not always readily available Issue 8.3/26 There is lack of clarity around the process to obtain equipment

General Discharge

Issue 8.3/27 Lack of support to the families of dementia patients who wish to go home.

The following recommendations were made by the staff interviewed:

Admission avoidance

Suggested improvement 8.3/1 There is a need to increase the awareness of end of life care for patients with mental health needs. Suggested improvement 8.3/2 There is a need for further education and training in palliative and end of life care Suggested improvement 8.3/3 There is a need to develop competences in the prescribing of medication for end of life care Suggested improvement 8.3/4 There needs to be better services in the community to support patients and carers especially in a mental health crisis. Suggested improvement 8.3/5 There needs to be more specific training in dementia care in the end of life stage in nursing/care homes. Suggested improvement 8.3/6 Raising awareness in the care of a patient with communication difficulties Suggested improvement 8.3/7 There is a need to develop further the Hospital and Home service to facilitate more end of life care. Suggested improvement 8.3/8 There should be greater services to support patients at the end of life stage in nursing/care homes. Suggested improvement 8.3/9 There is a requirement to make service more equitable at the end of life stage Suggested improvement 8.3/10 There is more support required for families to have a break from caring. Suggested improvement 8.3/11 There is a need to develop more formal process for patients with LD or mental health needs to access end of life care in the hospice environment

- 115 -

Suggested improvement 8.3/12 When a patient has communication difficulties there is a need for more specific skills and knowledge Suggested improvement 8.3/13 More awareness about the support available to families. Suggested improvement 8.3/14 Earlier support and information for carers. Suggested improvement 8.3/15 There is a need for more specifically skilled staff in mental health needs at the end of life stage Suggested improvement 8.3/16 Inclusion of mental health professionals at GSF meetings

Suggested improvement 8.3/17 To reduce crisis, the supporting of family before crisis

Palliative Care

Suggested improvement 8.3/18 Raising awareness in the care of a patient with communication difficulties Suggested improvement 8.3/19 There is a requirement to make service more equitable at the end of life stage Suggested improvement 8.3/20 When a patient has communication difficulties there is a need for more specific skills and knowledge Suggested improvement 8.3/21 There is a need for a fast track CHC process

Communication

Suggested improvement 8.3/22 Rationalisation of information is required

Suggested improvement 8.3/23 A Seamless service is required to know the patient, to be aware that legislation affects the decisions

Suggested improvement 8.3/24 If there was a routine discussion it would make it easier to plan end of life

Suggested improvement 8.3/25 Mental Health staff have skills which can be utilised e.g. depression and long standing illness; having fast track system into having access to that expertise within the team

- 116 -

9. Specialist Palliative Care

9.1 St Elizabeth Hospice care

St Elizabeth Hospice care is a hospice situated in Ipswich. The catchment area is East Suffolk and the hospice will provide care for anyone appropriately, including patients who maybe on the boundary catchment areas of other hospices. The hospice opened in 1989 and now offers a wide range of services to palliative care patients and their family carers. The hospice is a registered charity and relies upon fundraising to run its services, it also receives funding from NHS Suffolk but this equates to approximately 25% of recognised funding streams.

Information regarding the delivery of palliative and end of life care was collected using the following methodologies:

• Interviews with Chief Executive Officer and Director of Patient Services • Telephone interview with In patient manager • Analysis of activity data • Focus group – patient users

In-patient unit

The inpatient unit (IPU) at St Elizabeth Hospice care is a purpose built unit which has a total of 18 beds which includes 17 general beds and 1 respite bed for people who are actively supported by the hospice, for example patients with long term conditions. The accommodation offers 3, 4 bedded bays, 6 single rooms that include 2 family rooms and facilities for relatives and family carers to stay overnight.

Table 1: In-patient admission and length of stay

In-patient 2006 2007 2008

Number of patients receiving inpatient 275 356 335 care per year

Number of admissions 412 426 424

Occupied Bed Days 6347 5247 4435

Average bed occupancy % 76 80 72

Average length of stay 16.4 12.1 11.9

2009/10 occupancy of respite bed = 29 out of 52 weeks

Table 1: shows that for the last three years bed occupancy has been variable between 80% and 72%. However, the inpatient unit had fairly stable admissions and managed to reduce the average length of stay down to 11.9 days and recent data indicates this continues to fall. The national average length of stay is 13.2 days. 50 % of patients are discharged home. At present, approximately 1/3 of referrals die within a week of being referred, and 1/3 within a month, the remaining can extend up to 2 years.

- 117 -

Patients are referred to the inpatient unit for:

• Symptom Control • End of life care • Respite Care • Rehabilitation

Sources of referral usually arise from GPs, DN’s, and Macmillan Nurses, social workers, community hospitals or palliative care teams at acute hospitals.

Table 2: Reason for admission

Terminal Blood Respite Symptom control Paracentisis Total Care Transfusion Care 2007 313 71 13 9 426 2008 285 78 13 24 424

Like many specialist palliative care units; the majority of patients admitted to Elizabeth Hospice Care have a cancer diagnosis (Table 3). The hospice currently runs at approximately 25% in the number of non cancer patients admitted to the unit and aims to increase this to 30 %. by the end of 2013.

Table 3: Patient diagnosis on admission in 2008

Cancer Cancer Dementia COPD Renal Failure Heart Failure HIV MND Parkinson’s Unknown Total MS 380 2 4 3 18 3 1 2 2 9 424

The following maps demonstrate where the patient referrals are coming from and show the outline boundaries of these referrals.

- 118 -

Map 1:

F - 119 -

Map 2:

- 120 -

Service Provision

Day patient unit

Day care at St Elizabeth Hospice Care operates 5 days a week. There are clinics on most days run by a doctor and nurse with input from other MDT staff and operate as follows:

• Tuesday, Thursday and Fridays are full days which are mainly used for the assessment of new patients and/or with complex issues. There are up to 11 places available, staff state that places are not completely filled with approximately 70% uptake. • On Mondays and Wednesdays the hospice is able to run 4 half day sessions for different groups of patients, each group runs on the same day but alternate weeks. These are for patients with more stable symptoms and patients aiming to be discharged. There are up to 11 places available, staff state that places are not completely filled with approximately 50% uptake. • There is a psychological group on Mondays which can operate on alternate weeks.

Further groups are run in addition to the places available for Day care, those being:

• Rehabilitation Tuesday/Wednesday/Friday – 7 places. • Out Patients. 7 clinics a week. ½ day sessions. This service is flexible according to how many referrals are received; the hospice aims for all patients to be offered an appointment within two weeks of referral. • Positive living groups – 6weeks for patients and their family carers, supporting with coping mechanisms and practical advice. A senior member of the hospice staff stated “We don’t get people early enough for them to make full use of this service”. • Hearty Living Group in association with the Heart Failure Clinical Nurse Specialist from Ipswich Hospital. • Brain Tumour Support Group – facilitated at the Hospice by a local support group. • Breathlessness clinic – run on an ad hoc basis (according to the need) 6/52 course. • Creating memories group – leaving legacies and enabling patients to work through issues and relationships. • Family Carers Dropin Service – staff reported there has only been a limited response for the service and therefore they are reviewing it. The service will may wish to use volunteers to support family carers in different ways, for instance by phone. The review will include developing closer links with Suffolk Family Carers. • Family Carers social events focussing on normal social experiences for them and the patient i.e. “fine dining” and cinema nights. These events have been well attended.

Family Support Services

Services that can be provided both in the Hospice and in the community by a team of social workers and nurses dealing with psychosocial issues and provide counselling support.

Community Services

• The community Hospice at Home team is made up of 7.4 WTE. Clinical Nurse Specialists who provide a 24/7 rapid response type service, mainly for patients in the last days of life, to support crisis situations and to prevent unwanted admissions. The team links with many other services and generally report good working relationships, staff members have commented on the “duplication of processes” and the affect this has on what is often the patient’s short available time. • Community health care assistants support packages of care, where statutory services are not available at that time. These allow for discharges from hospital and the hospice,

- 121 -

especially where it is the patients wish to die at home. The maximum length of this service is a month.

Admission and referral

The criterion for referral and acceptance of Hospice Care includes anyone with palliative needs irrespective of diagnosis. The admission decision is based on the patient’s clinical and psychological requirements and all patients referred are assessed individually. For those patients with predominantly social care requirements without a specialist palliative need, they are generally not accepted.

A member of staff commented that referrals are not made early enough in the patient’s disease pathway. Referrals to the unit are made using a referral form; this can be faxed or posted. Sometimes referrals are made by telephone but a referral form is also required. Referrals during the out of hour’s period are received by ward staff in liaison with the medical consultant on call and the Hospice aims to admit suitable referrals within 24hours. Referral and admission to the Inpatient unit for respite are discussed at the weekly Tuesday afternoon MDT meeting. Relatives may sometimes contact the unit directly for advice regarding admission.

Discharge

The decision to discharge a patient is made at the weekly MDT meeting and in conjunction with the patient and their relatives. If required, discussions are also held at the daily MDT meeting. The decision for discharge is led by the patient when they feel ready to go home or to their Preferred Place of Care, supported by the MDT decision that they feel the patient is physically and emotionally prepared for discharge. Discharge arrangements can often be complex and time consuming.

A referral is made for social care when a need for care is identified, if the patient/family or staff identifies the need for care, a community care assessment is completed soon after admission. If required, a referral is made via fax to the Integrated Discharge Planning Team at the Ipswich Hospital Trust which has an identified Community Care Practitioner (CCP). The IPU manager states that “there are gaps in the provision of this service. During the CCP annual leave/absences, discharges can be delayed for up to 2 weeks”.

If the patient is referred to the IDPT or it is felt the patient may meet the criteria for CHC funding, a CHC Checklist is completed. If appropriate, staff are able to complete a full assessment. However it was reported that this can be a very time consuming process. An application for CHC funding can also be made under fast track rules “this is a much easier process” stated the manager.

All CHC applications are completed electronically but can only be submitted via fax to the PCT CHC team, this is due to needing an ‘original’ signature, but can be costly to the Hospice as the full CHC assessment is 41 pages.

Functional and nursing equipment is requested from the central equipment stores, usually by telephone/fax, this is facilitated by the Hospice OT’s. Delivery for CES equipment can take up to a week, this can delay discharge if the equipment is essential e.g. hospital bed/hoist. Items from the hospice are stored on site and there is no cost to patients (some items have been donated, others the hospice will have purchased). Hospice equipment e.g. slide sheets, commodes, urinals, bed rails, pressure relieving cushions/mattresses etc, may be given to the family to take home or hospice staff will deliver e.g. maintenance, OT’s, Hospice @ Home or Community HCA’s. This is carried out on the same day as required if essential. The unit managers’ understanding is that 2 vehicles have been removed from making deliveries, and that delivery is now carried out based on a geographical basis rather than based on need. Transport for patients is arranged via the family, ambulance service or volunteer drivers. When this involves the ambulance service this has to be booked by fax by 12.00 the day before discharge. If

- 122 -

there is a rapid same day discharge, the staff phone and fax to request an ambulance, if the ambulance service cannot accommodate the request, the hospice will pay St John Ambulance service instead.

The following issues were raised during the Hospice investigation and have been themed as:

(Please note that issues and challenges highlighted by staff may be individual perceptions rather than an organisational view or policy.)

Admission

Issue Number 9.1/1 Patient and family carers do not know who to contact in a crisis. There is lack of recognition for the need to tackle the inequalities of Issue Number 9.1/2 end of life care for minority groups, e.g. travellers, homeless etc Issue Number 9.1/3 The community Macmillan team are under resourced One of the Main problems is the shortage of frontline staff – care Issue Number 9.1/4 workers, nurses and our Macmillan team. Issue Number 9.1/5 There is a limited capacity for day care provision The Macmillan team do not receive standardised information for Issue Number 9.1/6 referred patients Issue Number 9.1/7 Choice is not always offered The Ambulance service do not divert admissions to the Hospice – Issue Number 9.1/8 however they could do as we can take 24/7 admissions.

Discharge

Issue Number 9.1/9 There is a lack of a robust system to cover the social workers leave The lack of standardised response for supporting functional Issue Number 9.1/10 equipment affects discharge planning Issue Number 9.1/11 Discharges are complex to arrange Issue Number 9.1/12 CHC Checklist is time consuming Nursing homes / other areas do not complete planning e.g. equipment Issue Number 9.1/13 and medication which means the Hospice at Home team are exposed to families displaying distress and anxiety.

Communication

Information sharing does not occur early enough in the patients Issue Number 9.1/14 pathway Issue Number 9.1/15 There is a lack of centralised information Issue Number 9.1/16 The information received from the referring acute trust is variable Issue Number 9.1/17 Family Carers are not being listened to Coordination of future redesign of pathways does not always include Issue Number 9.1/18 the hospice Issue Number 9.1/19 There is a lack of interpreting resources

Equipment

Issue Number 9.1/20 Equipment access is inequitable Issue Number 9.1/21 When equipment is needed immediately, this can be a lengthy process

- 123 -

Transport

Issue Number Redesign of the transport service has had implications on discharge 9.1/22

Coordination

Issue Number There is a need to offer carers assessments 9.1/23 Issue Number There are many organisations providing support services however the 9.1/24 patient and family carer does not always know which is the most appropriate for them Issue Number There are to many bureaucratic requirements in the pathways 9.1/25 Issue Number Medications in the community can be difficult to obtain during OOH 9.1/26 period Issue Number Better information sharing at an earlier stage 9.1/27 Issue Number Better signposting to other support services 9.1/28 Issue Number Services for family carers are fragmented and not smooth, there are gaps 9.1/29 in provision for family carers Issue Number Clarity of what people can do, no single access 9.1/30 Issue Number Mixed messages of what is or isn’t available 9.1/31

Provision of community care

Issue Number There are capacity issues with respite care 9.1/32 Issue Number There is a lack of confidence in the provision of end of life care in 9.1/33 Care homes Issue Number There is a lack of equitable services available from social services and 9.1/34 agencies across the county. Issue Number It can be difficult to access respite beds 9.1/35 Issue Number More support in the community for and at all stages of caring 9.1/36 Issue Number There is no agreement with GPs to share information 9.1/37 Issue Number It is not always possible to access care provision 9.1/38 Issue Number There are gaps in care provision 9.1/39 Issue Number There is no recognised standard entry to the palliative and end of life 9.1/40 care pathway. Issue Number There is a lack of equity for access for family carers, across the 9.1/41 county Issue Number People can be maintained in their own homes 9.1/42 Issue Number SPC can’t directly access MCNS Nurses for night support, they have 9.1/43 to go through DN or CHC duplication

- 124 -

Out of Hours

Issue Number There is a lack of support available to patient and family carers out of 9.1/44 hours Issue Number Access to community drugs especially linked with OOHs provision 9.1/45 Issue Number the OOHs service takes too long to call back 9.1/46 Issue Number prescribing of drugs, needs to be done by a GP in OOHs – continuity 9.1/47 of care could be better

Training and Education

Issue Number Staff lack awareness of family carers role 9.1/48 Issue Number Care home staff lack knowledge around end of life tools 9.1/49 Issue Number Ability of people to communicate the needs of a palliative care patient 9.1/50 – better education of staff would improve this

Access

Issue Number Not sure who, where or how to access services for end of life 9.1/51 care

Family Carer Support & Assessment

Issue Number “Carers will make or break somebody staying at home” 9.1/52 Issue Number “The family default option can easily be 999” 9.1/53 Issue Number carers assessments are sporadic 9.1/54 Issue Number There is a lack of 24/7 services for family carers 9.1/55

Psychological Support

Issue Number Not aware of any support, or what is available 9.1/56 Issue Number Support to death of patient 9.1/57

The following recommendations were raised during the Hospice investigation and have been themed as follows:

Training and Education

Suggested improvement 9.1/1 Increase the knowledge of the use of end of life care tools, especially in Care Homes Suggested improvement 9.1/2 Develop staff listening skills Suggested improvement 9.1/3 Ability of people to communicate the needs of a palliative

- 125 -

care patient – better education of staff would improve this

Service Issues

Suggested improvement 9.1/4 Tackle the inequalities of end of life care for minority groups, e.g. travellers, homeless etc Suggested improvement 9.1/5 Increase resources in the Community Specialist Nurse team

Suggested improvement 9.1/6 Develop a system to provide family carers support across Suffolk Suggested improvement 9.1/7 Review of available day unit provision and the impact of charging for transport and meals etc Suggested improvement 9.1/8 Provide immediate responses by OT’s and the availability of equipment Suggested improvement 9.1/9 Dementia care in elderly services needs to be embraced

Suggested improvement 9.1/10 Non cancer patients; still some ignorance of hospital services

Access

Suggested improvement 9.1/11 More services for family carers particularly 24/7 Suggested improvement 9.1/12 Mentoring/buddy service for patients and family carers Suggested improvement 9.1/13 Increase resources for respite care

Family carers support

Suggested improvement 9.1/14 Develop a 24/7 helpline Suggested improvement 9.1/15 There is a need to support family carers who require an advocate Suggested improvement 9.1/16 Family carers felt a key worker, or coordinator, facilitator would have been helpful, they mentioned the value of the DN role but felt there was still room for improvement Suggested improvement 9.1/17 Family carers would value a 24/7 service for info, advice, hands on support in the home, more could be done to support them with respite provision, preparation and planning for the grieving process. Suggested improvement 9.1/18 For family carers not able to speak up for themselves, the service was not so good. “The ability to acknowledge and allow family carers to speak up is paramount to improving their experience of caring at the end of life stage of their loved one “

Out of Hours Service

Suggested improvement 9.1/19 24 hour care required in the community

Information

Suggested improvement 9.1/20 Early information sharing in the patients pathway Suggested improvement 9.1/21 There should be improved sign posting to services Suggested improvement 9.1/22 More centralised information, bringing together of information Suggested improvement 9.1/23 More shared information, better links across all agencies Suggested improvement 9.1/24 Referrals from hospital need more information i.e.

- 126 -

medications, treatment/care plan Suggested improvement 9.1/25 Improve the handover information given to the SPN Suggested improvement 9.1/26 Sharing information – access to partners who are not known to the hospice

Medication

Suggested improvement 9.1/27 Easy access to drugs out of hours, nonmedical prescribing and preemptive prescribing

Coordination of pathway

Suggested improvement 9.1/29 Develop a seamless service

Suggested improvement 9.1/30 Coordinate future pathway design with all stakeholders

Discharge

Suggested improvement 9.1/31 Improve system to cover social worker

Training & Education

Suggested improvement 9.1/32 Non cancer patients; still some ignorance of hospital services

- 127 -

9.2 St Nicholas Hospice Care

St Nicholas Hospice care is a hospice situated in Bury St Edmunds. The hospice will provide care to those living in West Suffolk and Thetford. The hospice was founded in 1983 and moved to the current building in 1993. It now offers a wide range of services to palliative care patients and their family carers. The hospice is a registered charity and relies upon fundraising to runs its services, it also receives some funding from NHS Suffolk but this equates to approximately 25% of recognised funding streams. Hours of operation are 24 hours for 7 days a week for bedded unit and community services 9am to 5 pm, 7 days a week including BH.

Information regarding the delivery of palliative and end of life care was collected using the following methodologies:

• Interviews with CEO and Clinical Services Director • Telephone interview with ward sister • Focus group – patient users • Focus group – Specialist Palliative Care Team 12 staff attended

Services include:

A 24hour telephone advice line is available for all healthcare professionals, including General Practitioners and District nurses.

The clinical workforce in March 2010:

The clinical workforce within the hospice in March 2010 comprised of:

• 57 practitioners ( 29 WTE) supported by • 8 (5.6 WTE) administrators and • 113 clinical volunteers.

In-patient unit

The inpatient unit (IPU) at St Nicholas Hospice care from May 2009 had bed capacity reduced from 12 to 8 due to ward renovations, and more recently have increased to 10. Both referrals to the in patient unit and subsequent admissions have reduced. Table 1 shows that for the last three years, bed occupancy has increased from 76% to 82%. The inpatient unit have seen a rise in the average length of stay up to 11.1 days. The national average length of stay is 13.2 days.

Table 1 – In-patient unit

In-patient 2006 2007 2008 Number of patients 245 250 190 receiving inpatient care per year

Number of admissions 309 317 234 Occupied Bed Days 3226 3411 2688 Average bed occupancy % 76% 80% 82% Average length of stay in 9.58 10.7 11.1 days - 128 -

Patients are referred to the inpatient unit for:

• Symptom Control • End of life care • Respite Care • Rehabilitation

Table 2 - Reason for admission

l Care Care Total Carer Carer Contro Symptom Breakdown Breakdown Blood Blood Trans Respite Care Respite Care Paracentesis Paracentesis Psychosocial Psychosocial Rehabilitation Rehabilitation Terminal Care Terminal Care Reassessment Reassessment 2006 126 69 10 0 33 8 3 60 0 309

2007 132 68 8 0 15 3 3 87 1 317

2008 111 52 1 0 3 4 1 61 1 234

Like many specialist palliative care units; the majority of patients admitted to Hospice Care have a cancer diagnosis

Table 3

2007 299 all non malignant = 18 2008 231 all non malignant = 3

Graph 1 - In-patient admission and length of stay 7

Sources of referrals are hospitals, GPs, DN’s, Macmillan Nurses, social workers, or palliative care teams at acute hospitals and also from patients and families where appropriate.

Chapter 1 7 Annual Quality Account: St Nicholas Hospice Care 2009/2010

- 129 -

Table 4 – Source of referrals

Source % GP and DN (Mainly GP) 40 Hospital 40 WSH Palliative Team 10 Patient and Family 10

All referrals to St Nicholas Hospice Care services are processed by the Referrals Office (open 8.30 am to 4.30pm Monday to Friday) using a single referral form which can be faxed or posted. Sometimes referrals are made by telephone but a referral form is also required. A new triage service was put in place to respond rapidly to all new referrals which is managed by a Nurse Specialist from the Community Hospice Team. This service has an average response time less than 24 hours.

Referrals are discussed every weekday morning at the St Nicholas Hospice Care multidisciplinary team meeting and contact is be made with the patient/client either within 24 hours if urgent, or as appropriate. The referrals are allocated to the most appropriate department for an efficient response. Inpatient respite referrals are also discussed at the weekly Tuesday afternoon MDT meeting.

Urgent referrals out of office hours can be made via telephone to the staff on the Ward or the Community Hospice Team. A nurse provides palliative care advice and refers on to the Doctor if necessary. New referrals are assessed only if the GP or OOH service provider can jointly assess the patient however it was reported that this rarely occurs. Additionally it was noted that there is no priority to take community patients.

- 130 -

Map 1 - Postcode referral map 2006 - 2007

- 131 -

Map 2 – Postcode referral map 2007 - 2008

- 132 -

Map 3 – Postcode referral map 2008 - 2009

- 133 -

Discharge

The decision to discharge a patient commences as early as possible following admission and is made in conjunction with the patient and their relatives. The weekly MDT meeting reviews discharge arrangements, but this does not delay discharges. The unit team utilise advance care planning and include where the patient wishes to be cared for including where they want to end their lives. Discussions are also held at the daily nurse/doctor meeting. The decision to discharge is led by the patient when they feel ready to go home or to their Preferred Place of Care, supported by the MDT decision that they feel the patient is physically and emotional prepared for discharge. The weekly MDT meetings are held on Thursday afternoons which the ward sister reported is being reviewed as it is difficult to follow through decisions made where other agencies need to be included. Discharge arrangements are often complex and time consuming and it was noted that it “is not difficult to contact services on a Friday however it is difficult to organise and implement the required services”. This can lead to delays in discharge when everything stops at the weekend.

A referral is made for social care when the need for care is identified, and the patient gives permission. There is no time set for a care needs assessment as the process is ongoing. If the patient is not known to social services the referral is made to the link social worker at West Suffolk Hospital. The relationship between the services is good but due to lack of resources the social worker does not always assess the patient in a timely way. There is no cover during Annual Leave or other causes of absenteeism, but the staff can utilise the duty social worker scheme. When the patient is known to social services the ward staff contact customer first to refer to the community social worker. If the social worker is away the referral is passed onto the duty social worker.

For patients who live in South Norfolk the unit staff find it difficult to access the social worker. Delays in discharge have occurred with patients who have a Suffolk GP but live over the county border. Staff have stated “getting in touch with the relevant office meant being passed from extension to extension. Telephone calls have not been returned when stated. Patient having to wait long periods for initial assessment and/or care to start”

The staff on the inpatient unit carries out the CHC checklist with the patient and/or a family member and if the patient qualifies goes onto complete the full assessment. The staff always arrange to do this with the social worker however the process of coordinating appointments can be time consuming and cause delay. An application for CHC funding can also be made under fast track rules; the ability to by pass the documentation of the full process is a much easier process. Following confirmation of support the CHC PCT are normally able to organise the requirements quickly. Occasionally it is difficult to access packages of care. All CHC applications are via electronically to the PCT CHC team.

Case Study

A 48 year old female patient who’s Preferred Place of Care for her end stages of life was her home .She lived with her husband who was unable to care for her without support The ward staff worked with the PCT CHC team to fast track the process to obtain the support to resource the packages of care the patient required. The patient required 2 carers for 4 times a day. The care could not start for a week due to lack of community care staff. The patient died in the hospice.

Functional and nursing equipment is requested from either the district nurse or Central Equipment stores electronically through our own rehabilitation team. Smaller items from the Hospices own stores are on loan only until obtained from central equipment stores. “We sometimes organise collection and delivery of stores items ourselves, with our facilities staff, to enable a timely discharge if equipment is delayed”.

- 130 -

Transport is organised through the West Suffolk Hospital transport team, either by telephone if short notice, or by completing a request form. “We do not always get our preferred date or time but they are always as helpful as they can be”.

Day Hospice

Following an assessment by the appropriate lead clinicians, patients are offered a variety of programmes to assist them and their families in the management of unresolved symptoms and psychosocial issues on a day basis. The service operates 2 days a week (for up to12 people per day). In addition to this, the Day Hospice provides:

• Positive Living Programme in relation to body image and self management • Fatigue Programme • Breathlessness Group • Headstart (Practical and emotional support for people with treatment induced alopecia)

Additional outpatient services include:

• Complementary Therapy • Physiotherapy • Occupational Therapy

Staff reported that day activity also includes art, various speakers, relaxation and links with the chaplain team and community education. Patient user groups describe the sessions as having a primary benefit “peer support, relieves boredom, isolation and a place I can listen to others”.

Community Hospice Team

This year the community team formally transformed from a nursing team to an interdisciplinary service. Casemanagement of complex end of life care is led by the Community Clinical Nurse Specialists (CCNSs). They concentrated on end of life interventions, influencing GSF meetings and supporting primary health care teams and care homes.

The CCNS have stated in the past year they have seen:

• A 28% increase in SNHC patients discussed at GSF • 71% of patients on CCNS caseload achieving their preferred place of death • A 44% increase in CCNS referrals from 491 to 708 • CCNS work being enhanced by newly appointed nursing assistants giving ‘hands on care’ • 14% increase in number of patients dying who were known to CCNS, 307 increased to 350. • 194 inappropriate admissions prevented by CHT nurses • 23% less visits by CCNS – change of practice to: influence via GSF • increase telephone liaison8

Home deaths supported by the Hospice rose slightly from 215 in 2008/9 to 216 in 2009/10. The Community Hospice Team (CHT) managed to respond to a 44% increase in referrals and increasing activity at weekends and bank holidays. It is estimated that by working in this way the

8 Chapter 2 Annual Quality Account: St Nicholas Hospice Care 2009/2010

- 131 -

team prevented 194 potential admissions to hospital. The team works in localised geographical patches/hubs; they stated the importance of local knowledge and relationships. They provide specialist leadership and reported that their opinion is often sought and respected.

Referral

Criteria for referral are that the patient is in their last 12 months of life. The level and duration of input is based on the specialist palliative assessment. The team said it is often only generalist support that is required which therefore necessitates referral to other services. Referrals mainly come from the local hospital palliative team and GPs. The referrals are prioritised via a triage system, key triggers are identified to determine the response and prompt a return call within 24hrs. The team will respond earlier if it is urgent and also redirect the referral if required. The team does not make assessments in the acute hospital; the team said they have a weekly meeting with the palliative care team to discuss cases including transfer of information, for admissions and discharges.

Please note that issues and challenges highlighted by staff may be individual perceptions rather than an organisational view or policy. The issues raised have been themed as follows:

Admissions

Issue 9.2/1 People not being referred at the right time e.g. too late, discussions are left for many reasons Issue 9.2/2 Assumptions are made that people do not want to come to a hospice Issue 9.2/3 There is a lack of night qualified nursing staff Issue 9.2/4 It is too disorientating to bring dementia patients in a hospice – lack of community support for this type of condition Issue 9.2/5 Night nursing – lack of qualified staff to give support when families are at their most vulnerable. Issue 9.2/6 No priority to take community patients Issue 9.2/7 New referrals will be assessed only if the GP or OOHs service provider can jointly assess; this rarely occurs

Palliative Care

Issue 9.2/8 There are some senior care home staff that are lacking the basic understanding of end of life care

Communication

Issue 9.2/9 There are professionals who find it difficult to approach the subject of dying Issue 9.2/10 Presently medical staff do not work after death Issue 9.2/11 No personal contact with Customer First following assessment. “Never been a carer before and they left a gap in care for me to provide” Issue 9.2/12 Information communicated that patients can’t die in hospital Issue 9.2/13 “It was the quality of life I was not prepared for, no one came in touch with us”. Issue 9.2/14 Discussions with patients/ families are difficult, assumptions that the hospice is related to death and not everyone wants to discuss this topic.

- 132 -

Continuing healthcare assessments

Issue 9.2/15 The biggest problem is completing the CHC forms due to the staff availability i.e. external S/W. The decision making tool has made an enormous impact on the workload for staff in the inpatient hospice environment. Issue 9.2/16 Cumbersome CHC process, does not suit all patients as they do not reach criteria until in very late stages. The improvement in palliative care has resulted in less patients meeting this criteria. The dying phase is often much shorter which means they cannot apply for CHC in advance "even fast track too slow"

Patients and family carers

Issue 9.2/17 “On Friday, Saturday and Sunday – NHS did not exist, the hospice was the only place you could ring if needed – they would ring back an hour later – support given for medication”. Issue 9.2/18 Lack of respite at home and residential Issue 9.2/19 “Eventually someone came from the social council and organised someone to come in – carers came in at any time not as arranged / not the same person”. Issue 9.2/20 “I was treated as just “the husband” I wanted my wife to die at home but they saw the practical side in an old cottage, a chair was used to get out of the cottage bedroom and it was stressful to every one – the crew, myself and my wife”. Issue 9.2/21 “Hospice Coordinator came in and offered an assessment, equipment, introduction to hospice. I have never heard of family carers”. Issue 9.2/22 “I was left alone”

Issue 9.2/23 Carers variable

Issue 9.2/24 No support when patient is confused and the carer becomes unable to cope

Coordination

Issue 9.2/25 No consistent GSF system embraced

Issue 9.2/26 The key worker is not identified at the GSF meetings Issue 9.2/27 “With M.C. nurses the same nurses came in and this was good, variable between carers. Some better than others, some left early to care for children not good for patient”. Issue 9.2/28 Standard of treatment variable according to where people live Issue 9.2/29 Variable care in acute setting Issue 9.2/30 Lack of continuity Issue 9.2/31 Provision of care dependant on where you live

- 133 -

General Discharge

Issue 9.2/32 Bed management strategies/ hospital quality indicators inappropriately influencing discharges

Education

Issue 9.2/33 The training needs of OOH providers are unknown due to a unstable workforce.

OOH

Issue 9.2/34 Paucity of OOHs nursing support Issue 9.2/35 Provision of information to carers, “No clean on-call information” Issue 9.2/36 OOHs staff who do not know the system Issue 9.2/37 No 24 hour district nursing

Equipment

Issue 9.2/38 Inconsistent central response to request for essential equipment

Psychological

Issue 9.2/39 Carer fatigue often main indicator for inappropriate admission. Issue 9.2/40 Services need to be pooled to address the need for support Issue 9.2/41 Lack of psychological support for patients and families during illness and in bereavement Issue 9.2/42 Lonely and frightening do not want to leave a message on the phone – a response is required

Information

Issue 9.2/43 Lack of patient education programmes

Issue 9.2/44 There is a need to increase accessible information Issue 9.2/45 “Our GP was a good support, a social worker did a social assessment – and then communication stopped”.

Issue 9.2/46 “Beginning good, big gap in the end and excellent end of life care”. Issue 9.2/47 Provision of information was poor

Medication

Issue 9.2/48 No standard end of life prescribing practice which impacts on another important variable dispensary Issue 9.2/49 Lack of forward planning Issue 9.2/50 Services not always proactive Some GPs prefer to wait until relative's phone and then go out to see them. Issue 9.2/51 Lack of skills for technology e.g. syringe drivers. Issue 9.2/52 There are no guidelines to cover "what if"

- 134 -

The following improvements have been suggested:

Education

Suggested improvement 9.2/1 Integrated an education strategy and involve carers

Suggested improvement 9.2/2 Develop staff rotation posts Suggested improvement 9.2/3 Nurse consultant to drive projects of change

Suggested improvement 9.2/4 Education and training to include shadowing, practice , hospice experience

Suggested improvement 9.2/5 Include education in relation to more integrated working with the acute sector, nursing homes

Service Issues

Suggested Improvement 9.2/6 Great need to improve on am discharge,

Suggested Improvement 9.2/7 Expand HCA numbers; many episodes require two HCA’s to attend to the patient

Access

Suggested Improvement 9.2/8 Earlier referral to the hospice. Hospice open to self referral

Family and Carers Support

Suggested Improvement 9.2/9 Increase information on a website people can find out and make their own decisions.

Suggested Improvement 9.2/10 “I would like a number I could ring and speak to someone.”

Suggested Improvement 9.2/11 Develop a service to prevent carers suffering from " carers fatigue "

Suggested Improvement 9.2/12 Refer to the hospice early in the patients pathway

Suggested Improvement 9.2/13 Increase carers agenda Suggested Improvement 9.2/14 Full coordinated approach to care. To be able to share top level information e.g. test results Suggested Improvement 9.2/15 Develop mentor scheme for carers

Suggested Improvement 9.2/16 Carers supporting other carers as mentors

- 135 -

Out of Hours

Suggested Improvement 9.2/17 Share the same records and forms e.g. specialist OOH form

Information

Suggested Improvement 9.2/18 Develop a system to share simple top level patient information

Suggested Improvement 9.2/19 More sharing knowledge of carers required

Suggested Improvement 9.2/20 Develop hand held records

Suggested Improvement 9.2/21 Frankness of diagnosis appreciated

Suggested Improvement 9.2/22 Move services out into the community e.g. gyms

Diagnosis and Prescribing of drugs

Suggested improvement 9.2/23 More forward planning is required with families and medication. Suggested improvement 9.2/24 Develop guidelines “What if” Suggested improvement 9.2/25 All patients to have a "pot in the fridge" system. Tailor made to meet patients needs,

Suggested improvement 9.2/26 Explore care of the person who has dementia “where are the Admiral Nurses?”

Coordination & the End of life care pathway

Suggested improvement 9.2/27 Great need to improve on am discharge some difficulty with timing as patients conditions change quickly and therefore TTO’s need revising Suggested Improvement 9.2/28 CNS works well with ward staff and OOHs services and will follow up the care of patients Suggested Improvement 9.2/29 More integrated working with the acute sector, nursing homes

Suggested Improvement 9.2/30 Make care local with patients own GP’s, DN’s etc

Equipment

Suggested Improvement 9.2/31 Improve access to equipment

- 136 -

10 Community Service

10.1 General Practitioners

In Suffolk PCT there are 68 GP practices with currently 413 GPs listed as working at practices across the county. In addition a walk in service, commissioned by NHS Suffolk, at Crown Health Centre provides fast access to health information, advice and treatment for minor illnesses and injuries without having to book an appointment. The Centre is open 8am until 8pm, 7days a week and patients will normally be seen within 30 minutes of arrival and is provided for the NHS by The Practice; a primary care company.

There is a strong focus on practice based commissioning within Suffolk, the current groups are Blackbourne, Forest Heath, Sudbury and Bury working together as a named West Suffolk Commissioning Federation. Others are Ixworth, Ipscom, Brett Stour, Deben Health and CIA

Map: 1 PBC Consortia, September 2010

- 137 -

The views and experiences of GPs were obtained using the following methodology:

• Questionnaire sent via survey monkey and attached as a link in the weekly Primary Care Bulletin which was repeated within 4 bulletins; 7 were completed • Questionnaire sent to GPs via hand delivery;17 were completed • Attendance of the Project Team at 2 GSF practice meetings • Interviews held with an individual GP. • Lead GPs with a special interested in palliative and end of life care were contacted via the Practice Managers; 6 responses received

The questionnaire concentrated on eliciting information from the GP’s in relation to workload; palliative care registers; GSF; communication with community professionals; access to advice; communication with hospital professionals; OOH services; training and education; caring for patients with a non cancer diagnosis; caring for patients from an ethnic minority and community hospitals as well as requesting information relating to the main issues, challenges and recommendations for palliative and end of life care. The findings are all described below.

A total response was received from 29 practices which equates to a 42.6% response. Full responses from the questionnaire are presented in Annex 3.

Case load and palliative care registers

The majority of GPs felt that palliative care patients accounted for a small proportion of their workload with less than 10 % of their time spent caring for this group of patients. 99% GPs hold a palliative care register within their practices to ensure that palliative care patients are monitored and regularly reviewed. Responding GPs felt that most of all palliative care patients are on this register with 70% stating that all palliative care patients were captured. Palliative Care (PC2)9 The practice has regular (at least 3 monthly) multidisciplinary case review meetings where all patients on the palliative care register are discussed. Some GPs commented that the routes of communication with other community professionals were already effective but others responded they would like one single pathway to contact all agencies.

For 2009/10, 62 out of the 69 (90%) GP practices in Suffolk achieved PC2 indicator in Quality outcomes Framework. 73% of responding GPs are using the Gold Standard Framework

The following issues were raised in relation to palliative care registers

Issue 10.1/1 Not all surgeries are capturing, on a register, palliative patients Issue 10.1/2 Attitude of coroners if doctor has not visited recently could be an issue this often occurs if the person is not required medical input in very late stages of life. Issue 10.1/3 No hospice beds / no Macmillan Nurses / no Hospice at Home on Friday Issue 10.1/4 Hospice advised but did not assess Issue 10.1/5 Lack of support in the home Issue 10.1/6 Hospice bed not always available when needed Issue 10.1/7 GP not been contacted by a Macmillan Nurse in ages, they do not attend when invited to MDT meetings Issue 10.1/8 Difficult to recognise when to have the conversation Issue 10.1/9 Concern over when contract for DN’s moves to IHT, if team work breaks down, EOLC will also break down

9 http://www.bma.org.uk/employmentandcontracts/independent_contractors/quality_outcomes_framework/qof06.jsp?pag e=1 - 138 -

Communication with district nurses, other professionals in the community and the use of GSF

Almost all GPs stated that they meet regularly with district nurses and that the frequency of meetings was sufficient. GPs praised the DN service but highlighted that they would like to have the DN’s based at the practice for direct communication.

Communication with secondary care

Half (50%) of GPs felt that communication did not adequately describe the patient’s needs or supply sufficient information. One GP described the discharge letters as inadequate and often receive the patients’ notes when they have died. 50% of the GPs responded the consultant’s letters were not received in sufficient time although the period of delay was not recorded.

The following issues were raised in relation to communication relating to palliative care patients

Issue 10.1/10 It is not clear which palliative teams who is involved with the patient

Issue 10.1/11 Some clinicians put barriers between professions. . Issue 10.1/12 Strict visiting at home policy

Issue 10.1/13 Daughter underestimated what it would take to care for family member’s end of life.

Issue 10.1/14 The term "hospice" can at times give negative connotations and can put patients and carers off using the service in a timely manner. However once they have accessed the service the feedback is very positive from both. Issue 10.1/15 Patients do not always understand the role of the hospice

Issue 10.1/16 Marie Curie may still seen as cancer only

Issue 10.1/17 Inadequate discharge information

Issue 10.1/18 Lack of inclusion in the plans for the care of the patient

Issue 10.1/19 By the time the notes reach us the patient is long dead

Issue 10.1/20 Getting further information is timeconsuming and ties up our staff

Issue 10.1/21 District nurses can be difficult to contact especially in the afternoons

The following recommendations were suggested to improve communication:

Suggested improvement 10.1/1 Respects other people’s skills. Suggested improvement 10.1/2 Return to practice methods of communication Suggested improvement 10.1/3 Increase face to face discussions with patients Suggested improvement 10.1/4 Identify lead professional in the care of the patient Suggested improvement 10.1/5 Involve the GP in the planning of the care of the patient Suggested improvement 10.1/6 Integration of palliative care service Suggested improvement 10.1/7 Onecall phone line to the hospice Suggested improvement 10.1/8 Better communicating between oncology, primary care

- 139 -

and the hospice via the Macmillan / Marie Curie / Hospice at Home Nurses Suggested improvement 10.1/9 To have the DN in the practice as “direct” contact is now often done via paper rather than facetoface Suggested improvement 10.1/10 Continuing the integration of Oncology, hospice, Macmillan and other resources Suggested improvement 10.1/11 Regular meetings Suggested improvement 10.1/12 Go back to using the message book in the practice for referrals instead of going via single point of access Suggested improvement 10.1/13 More facetoface discussions with individual patients Suggested improvement 10.1/14 Ensuring all agencies can be contacted via the single pathway Suggested improvement 10.1/15 We need to decide who is the lead clinician; GP, Macmillan Nurse of DN Suggested improvement 10.1/16 Designated coordinator for the patients, either district nurse or hospital liaison Suggested improvement 10.1/17 Macmillan nurses and DN supply full list of contact numbers in hours and OOHs – to be available on a website so patients can access it

The following issues were raised in relation to care in the community and preventing hospital admissions

Issue 10.1/26 Patients who do not die at home tend to be because there is no support 24/48hrs.

Issue 10.1/27 The team were unclear as to whether the LCP was being used proactively in all care homes and whether the checklist was as user friendly as it could be. Issue 10.1/28 Care Homes need to be aware of and implementing the DNAR

Issue 10.1/29 The practice has a Carers Club available for carers and they engage with Suffolk Family Carers however carers are not always inclined to join this group in its current design.

Issue 10.1/30 Difficult to access carers

Issue 10.1/31 Some cases can be challenging with significant issues with relatives

Issue 10.1/32 High numbers of visits requested by Raglan house; disproportionate to the population involved Issue 10.1/33 Have tried on several occasions to discuss individual patients with the hospice but never been successful in obtaining practical help Issue 10.1/34 Lack of consistent GP resource; unable to recruit doctors to the practice when staff leave / maternity leave occurs Issue 10.1/35 Recruitment to the nursing teams is a problem and vacancies are not filled Issue 10.1/36 There is confusion as to who is leading the care

Issue 10.1/37 Having to work within a small time frame when changes occur

Issue 10.1/38 Difficulties in getting a nurse at short notice

- 140 -

Issue 10.1/39 Carers change which adds to the distress of the patient

Issue 10.1/40 Hospice at Home service

Issue 10.1/41 Easier access to emergency e.g. night sitting relief for relatives

Issue 10.1/42 Someone to give telephone advice on nursing matters overnight

Issue 10.1/43 Undesirable environment acute admissions ward is much too busy and chaotic

The following recommendations were suggested to improve care in the community and preventing hospital admissions

Suggested improvement 10.1/18 Improve the availability of nurses at very short notice Suggested improvement 10.1/19 Could the DNAR be completed as part of the care package? And by other departments such as ACS Home First? Suggested improvement 10.1/20 Combine the Hospice at home service with the RRT Suggested improvement 10.1/21 Relocate the nurses back to the practices Suggested improvement 10.1/22 The return of the primary health care team based in a practice and not an area or group of practices Suggested improvement 10.1/23 Stronger community support, more staff to provide care, a practice based team Suggested improvement 10.1/24 That similar services are commissioned in a more joined up and thoughtful way in future Suggested improvement 10.1/25 Macmillan nurse to have ability to prescribe Suggested improvement 10.1/26 Setting out the clear leader for care Suggested improvement 10.1/27 Formal transfers from GP to hospice Suggested improvement 10.1/28 Integration of Macmillan / Marie Curie / Hospice at Home Services Suggested improvement 10.1/29 Colocate nurse and Macmillan Nurse in the surgery’s Suggested improvement 10.1/30 Being able to rely on obtaining a nurse at short notice Suggested improvement 10.1/31 Hospice at Home service in the east and west of the county Suggested improvement 10.1/32 Fast access to 24 hour DN service to give injections Suggested improvement 10.1/33 24 hour hospice helpline with clinical input so patients can avoid A & E Suggested improvement 10.1/34 Allow ambulance to take patients direct to hospice if symptoms severe and not controlled Suggested improvement 10.1/35 Anticipation of what changes are needed for OOHs so they are available Suggested improvement 10.1/36 Stronger community support, more staff to provide care, a practice based team Suggested improvement 10.1/37 Secondary care needs to flag when they cannot realistically improve the patients health outcome to stop patients being bounced in and out of hospital, often at the behest of relatives Suggested improvement 10.1/38 OOHs mainstream, more attention to the patients who are in terminal phase Suggested improvement 10.1/39 Ensuring that nurse cover is available throughout the night Suggested improvement 10.1/40 Carers, availability and continuity Suggested improvement 10.1/41 Having patients own GP practice available OOHs for emergency Suggested improvement 10.1/42 Better preplanning with medication and prescriptions signed up

- 141 -

Suggested improvement 10.1/43 More emergency support for patients at home e.g. nursing / family support at short notice Suggested improvement 10.1/44 A clearer discussion with patients before they are discharged Suggested improvement 10.1/45 Merging ACS and NHS to create a joined up pathway for patients. Suggested improvement 10.1/46 GP’s providing their own OOHs care to their patient population Suggested improvement 10.1/47 The last visit of carers is often early with patients being put to bed at 7pm and left for 12 hours Suggested improvement 10.1/48 Plan preferred place of death earlier Suggested improvement 10.1/49 Link up with the hospice more, especially with noncancer patients Suggested improvement 10.1/50 COPD, heart failure, poor mobility, depression and dementia are often overlooked and spend a long time in hospital before they die

Out of hours services

There is a systematic way of sharing information with the out of hour’s service; a standard special patient Proforma can be faxed to the OOH provider. GPs reported they had an excellent OOHs service provided by the hospice at home team and made suggestions how this could be further enhanced with coordination of nursing teams, faster and easy access to support families and carers.

Improving urgent care services

The Out of Hours period was highlighted as the most challenging time of the day to manage this palliative and end of life patients. There was a recognition that the out of hours nursing service were very good but that they were overstretched in terms of resources coupled with the need to cover a large geographical area thus causing delays for patients receiving this service.

The following issues were raised in relation to OOHs services

Issue 10.1/44 There is always anxiety about having enough cover for the night shifts

The following recommendations were suggested to improve OOHs

Suggested improvement 10.1/51 Fast access to Community Nurses

Suggested improvement 10.1/52 24 hour help line

Access to palliative care services and advice

GPs access specialist palliative care services from either the local hospice St Elizabeth Hospice Care, St Nicholas Hospice Care and the Community Macmillan service. 1 questionnaire respondent stated their preference to seek specialist palliative care advice via the DN.

- 142 -

The following issues were raised in relation to accessing palliative care services and advice:

Issue 10.1/45 Reluctance to think about other conditions that lead to terminal care cancer is easy Issue 10.1/46 Macmillan nurses are very under resourced at present and currently only have capacity to support patients with cancer and no other conditions at the end of life stage. Issue 10.1/47 The Macmillan nurses are not very supportive in the Debenham area. Consequently, the GPs are reluctant to use Macmillan nurses Issue 10.1/48 Due to capacity issues and the understaffing of Macmillan nurses access to their support to carers and less so for patients can at times be delayed Issue 10.1/49 In my personal view the main difficulty in getting effective palliative care implemented for the patients is that they are reluctant to put themselves in for what they see as "giving up active treatment" type of services such as hospice care where the Issue 10.1/50 Macmillan nurses are based in Ipswich/Stowmarket so quite often DN has to pick up referral due to geographical areas. Similar situation with Hospice@Home – although they are very good at nights and weekends Issue 10.1/51 Too much silo working – work falls onto the District Nurse Issue 10.1/52 Asking patients where they wish to die and then not being able to comply with their wishes e.g. if there preferred place is hospice or Aldeburgh hospital with care at home

The following recommendations were suggested:

Suggested improvement 10.1/53 The team work together and discuss the options of drugs; the Macmillan nurse is often seen as a specialist for this advice to the team. Therefore an increase in this type of nurse would be of value. Suggested improvement 10.1/54 In order to get suitable care planned for patients it is in my view essential that Macmillan, Marie Curie, Oncology, and Hospice services are all integrated. Suggested improvement 10.1/55 Ambulance access direct to hospice

Caring for patients from an ethnic minority

There was an acknowledgement from some GPs that they had challenges in caring for patients from an ethnic minority community. For GPs with this experience, communication was cited as the biggest challenge in caring for this group. The language interpretation service was reported as the available service to GPs to support the delivery of care, however over half of the respondents acknowledged that they either had no knowledge of any supportive services or that there was nothing available within their geographical area. 60% of the GPs reported that they would not benefit from further training in this area.

Training and education

Most GPs felt they would only a little or not at all benefit from further training in palliative and end of life care. GPs regarded their clinical practice as effective in the provision of spiritual and psychological care with most stating they would not benefit from further training on these issues. However 60% of respondents felt they would benefit from further training in palliative care and 20% in “Breaking bad news”

- 143 -

The following recommendations were suggested:

Suggested improvement 10.1/56 More training and awareness required regarding end of life and the use of LCP in Care Homes Suggested improvement 10.1/57 Education plan requires input that includes GP`s Suggested improvement 10.1/58 Proper grown up education about Breaking Bad News Suggested improvement 10.1/59 Log outcomes of conversations in patient’s notes on computer and write to nursing / residential homes Suggested improvement 10.1/60 Have to be open and honest with patients and their families Suggested improvement 10.1/61 Have an education plan

Patients with a non-cancer diagnosis

GPs cited the that palliative and end of life care for non cancer patients needed improving and that within the provision of care, there should be more emphasis for patients with a non cancer diagnosis.

The following issues were raised in relation to caring for palliative care patients with a non cancer diagnosis

Issue 10.1/53 When a patient suffers from high levels of anxiety, or a diagnosis of mental health needs, this can at times cause more issues for the practice to manage, this can be increased when a patient is at the end of life stage.

The following recommendations were suggested:

Suggested improvement 10.1/62 Clarity is required of the type of patients the palliative teams will support

- 144 -

10.2 Community Nursing

10.2.1 Marie Curie Nursing Service

Information regarding the Marie Curie Nursing Service (MCNS) was collected using the following methodologies:

• Questionnaires sent to 19 Marie Curie Nursing Service staff, 5 were Returned • An interview with the Marie Curie Nursing Service Manager • An interview with the both acute hospital based Marie Curie Discharge Nurses • Review of service utilisation data

The following section outlines combined findings from the above methodologies. Detailed results of the questionnaires can be found in Annex 4:

Service structure

The MCNS provides nursing care to palliative care patients in their own homes or in residential homes. The service is commissioned by NHS Suffolk and covers the whole of the county and is provided for all patients irrespective of diagnosis. There is one rate for the cost of care for all patients and is jointly funded 50% from NHS Suffolk and 50% Marie Curie Cancer Care (MCCC) for nursing hours. All other on costs are funded by MCCC. The service required for Suffolk is predominantly a night service of 9 hour shifts from 10pm to 7 am and is available 365 days a year.

The Marie Curie Nursing Service is managed locally by a Nursing Service Manager and provides registered nurses and senior healthcare assistants. The present skill mix is approximately 40% qualified nurses and 60% unqualified nurses.

The Marie Curie Nursing Service employs staff on a contracted hour’s basis and on a bank contract. Bank staff are on zero hour contracts but there is an expectation that regular availability is given. Qualified nurses provide continuous nursing care, assessment, care of SDR, preemptively plan care and medication as appropriate and support the patients, carers and their families. In Suffolk the skill mix consists of:

• 30% Registered Nurses • 70% Health Care Assistants

The Marie Curie Nursing Service also provides two Discharge Nurses who are based at Ipswich and West Suffolk Hospital and these are funded by NHS Suffolk and the on costs are from the Marie Curie Service. Additional detail relating to the Marie Curie Discharge Nursing service provision is included in the relevant hospital sections of this report

Service activity

The service activity for the Marie Curie Nursing Service is presented below.

The total number of new patients seen between April 2009 and March 2010 across Suffolk is 276 and the total of existing patients during the same period is 160. This is further broken down into those patients with cancer of which there were 139 new patients Table 1.

During the period from April 2009 and March 2010, 19,630.25 hours were delivered by the MCNS to patients within the community. The number of hours provided per patient ranges from 9 hours or below to 63 hours or more; during the year the majority of patients received the latter figure. This was closely followed by between 9>18 hours; the majority of shifts provided are nine hour night shifts which equates to between one and three shifts per patient. Table 4: shows the breakdown of

- 145 -

the unmet shifts for both cancer and non cancer patients referred to the service during the same period; April 2009 and March 2010. Unmet need ranges from 4% to 16% for cancer patients and 4% to 29 % for patients referred to the service.

- 146 -

Table 1: Apr- May- Jun- Jul- Aug- Sep- Oct- Nov- Dec- Jan- Feb- Mar- Patients seen 09 09 09 09 09 09 09 09 09 10 10 10 YTD Cancer new patients 17 14 14 17 20 20 27 18 13 17 19 31 227 Cancer existing patients 11 12 7 10 5 10 12 13 15 7 7 11 139 Other new patients 4 5 5 3 3 4 2 4 3 6 4 6 49 Other existing patients 6 5 5 6 5 4 5 3 4 4 3 3 21 Total new patients 21 19 19 20 23 24 29 22 16 23 23 37 276 Total existing patients 17 17 12 16 10 14 17 16 19 11 10 14 160

Table 2: Hours delivered per patient 2009 / 2010

Hours per patient 0 > 9 9 > 18 18 > 27 27 > 36 36 > 45 45 > 54 54 > 63 63+ Total Cancer 5 45 48 39 16 19 10 56 238 Non Cancer 1 12 7 4 5 4 7 15 55 Total 6 57 55 43 21 23 17 71 293

Table 3: Hours delivered 2009 / 2010 Hours delivered Apr-09 May-09 Jun-09 Jul-09 Aug-09 Sep-09 Oct-09 Nov-09 Dec-09 Jan-10 Feb-10 Mar-10 YTD Bespoke visits 10.00 10.75 0.00 0.00 0.00 0.00 5.00 0.00 0.00 0.00 0.00 0.00 25.75 Day visits 210.50 146.00 94.00 51.00 132.00 6.00 44.00 15.00 18.00 15.00 26.00 53.00 810.50 Evening visits 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 Night visits 1,895.00 1,713.00 1,473.00 1,367.00 1,453.00 1,676.00 1,767.50 1,634.00 1,390.00 1,488.50 1,190.00 1,747.00 18,794.00 Total 2,115.50 1,869.75 1,567.00 1,418.00 1,585.00 1,682.00 1,816.50 1,649.00 1,408.00 1,503.50 1,216.00 1,800.00 19,630.25

- 147 -

Table 4: Unmet need for shift activity 2009/10 Apr- May- Jun- Jul- Aug- Sep- Oct- Nov- Dec- Jan- Feb- Mar- %Unmet hours 09 09 09 09 09 09 09 09 09 10 10 10 YTD Cancer 14.0% 11.9% 9.9% 16.2% 8.7% 10.2% 12.1% 10.2% 4.7% 8.6% 4.6% 4.8% 9.9% Non Cancer 7.7% 29.2% 8.5% 12.7% 6.4% 4.2% 7.1% 10.2% 6.1% 15.6% 4.5% 10.9% 10.6% Total 12.0% 15.6% 9.4% 15.2% 8.0% 8.5% 11.0% 10.2% 5.0% 11.1% 4.6% 6.2% 10.1% Bespoke 0.0% 4.4% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 3.6% Day 10.9% 21.6% 7.8% 39.3% 10.2% 0.0% 60.0% 38.9% 42.1% 0.0% 0.0% 18.0% 20.8% Evening 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% Night 12.2% 17.5% 9.5% 14.7% 7.8% 8.5% 8.6% 9.7% 3.9% 11.2% 4.6% 5.7% 9.7%

Table 5: Numbers of unmet need 2009/10 Unmet visits 29 42 15 28 16 14 24 26 9 20 6 13 242 242

- 148 -

Referrals

Referrals to the core Marie Curie Nursing Service are made by the District Nurse following a patient assessment via fax to the Marie Curie Referral Centre. The nationwide coordination centre is open 365 days a year. The District nurse is expected to provide a formal handover to the MC Nurse prior to the visit.

Marie Curie provides a guide for district nurses:

Referral criteria: • The patient is over 18* • The patient has end of life care needs for cancer or noncancer. • The patient wants to stay at home. • The GP is willing to care for the patient at home • The patient can be safely cared for at home • Family carers (where applicable) need additional support with the patient’s care.

* We will consider young people between the age of 16 and 18 on an individual basis.

Issue 10.2.1/1 Reacting when the service becomes busy, Friday afternoon discharges that could have been planned earlier

Role

The Marie Curie Nursing Service nurses describe the different elements of their role and these include the provision of nursing care overnight, support and respite for the families and carers as well as administering and assisting with medication. They link closely with the community nursing teams; one member of staff described how they would like more handover from the district nurses. “The handover is useful but does not often happen”.

Assessment and documentation

Marie Curie Nurses will utilise all the nursing notes and documentation available in a patient’s home relating to their care needs and these will guide their assessment. Updates and changes are recorded in the documentation or on the patient’s communication sheet. The MCNS staff all felt that patients’ notes are not appropriately designed to record the care provided to palliative care patients and would like to see the notes improved.

Communication

Marie Curie Nurses receive detailed patient information about the patient and carer before the shift from the Marie Curie Call Centre in Pontypool. The DN will also call the Marie Curie Nurse prior to the commencement of the shift for the purposes of nursing handover. The MCNS Manager reported that the service has strong links with the community for the purposes of providing information relating to the patient and the DN’s can update the status of the patient via the referral centre. The Marie Curie Nurses reported that there was inconsistency in the communication received and it was not adequate all the time.

Following their shift Marie Curie Nurses will document the care provided in the patient’s notes and call and/or leave a message for the DN via the telephone. The majority of staff do not have difficulties with handover but one member of staff reported that being unable to communicate directly with the DN’s after normal working hours was occasional an issue.

Marie Curie Nurses communicate with a variety of other professionals as required and these include, other Marie Curie Nurses, OOHs, Clinical Nurse Specialists, Hospice at Home Team and GP’s. The Marie Curie Nurses reported that they would like more contact with DN’s, hospice staff, - 149 -

members of the community nursing team. If there is a medical problem the Marie Curie Nursing Service staff would initially contact the OOH service or the Hospice at Home team.

Marie Curie Nurses raised the following issues in relation to assessment, documentation and communication:

Issue 10.2.1/2 Handover from District Nurses not occurring Issue 10.2.1/3 Poor overall communication Issue 10.2.1/4 Patient notes are poorly designed Issue 10.2.1/5 Handover from the DN before a shift is rare. Issue 10.2.1/6 Handover from the DN’s inadequate

In relation to assessment, documentation and communication the following recommendations were made:

Issue 10.2.1/7 Develop identifiable sections in core notes for all professionals to input Issue 10.2.1/8 There should be more frequent communication between Marie Curie staff and DN’s

Caring for ethnic minorities

Some Marie Curie Nursing Service staff reported that they did not have recent experience of caring for patients from ethnic minorities. Those that had experience, stated that communication, cultural and religious beliefs were equal challenges and three respondents to the questionnaire noted they were unaware or not sure of the support networks available. Staff members felt they would benefit from additional training in cultural awareness and end of life religious and cultural beliefs of ethnic groups.

Current strengths and challenges in palliative care

The Marie Cure Nursing Service nurses feels that the challenges/issues to providing effective home care to palliative care patients include:

Care package

Issue 10.2.1/9 There is a lack of provision of carers Issue 10.2.1/10 West / East inequitable service provision

Access

Issue 10.2.1/11 Where to access information is not clear Issue 10.2.1/12 Knowing the right professional to contact.

Medication

Issue 10.2.1/13 Medication not written up correctly

Coordination and end of life pathway

Issue 10.2.1/14 County services inequitable Services to support patients at home less available on the west side of the county which leads to greater demand on MCC service Issue 10.2.1/15 Referral pathway through a national link which does not have the - 150 -

same criteria as local pathway. Issue 10.2.1/16 Late pm Friday referrals, many could be referred earlier Issue 10.2.1/17 Lack of robustness in pathway to verify patients death Issue 10.2.1/18 RN’s who are available to work a night shift and not booked could be on call to assist Marie Curie HCA’s where appropriate e.g. with VOED Issue 10.2.1/19 More contact with the DN before attending a new patient to gain information about the patient / family needs Issue 10.2.1/20 Seamless service from hospital to home Issue 10.2.1/21 It works well to give a patient nurses they see on a regular basis which gives continuity of care and gains trust and peace of mind between family/patient Issue 10.2.1/22 to have all communication in the patient’s home documented in one area, more efficient and less time consuming Issue 10.2.1/23 Patient being assessed by Marie Curie Nurses Issue 10.2.1/24 Acknowledgement of the care families need

OOH

Issue 10.2.1/25 Lack of continuity and skills from OOH Service to support the technology that patients / carers require ad hoc, e.g. syringe drivers Issue 10.2.1/26 Length of response time from OOHs to verify the patients death.

Issue 10.2.1/27 Limited relationship with OOHs and transport services.

Issue 10.2.1/28 OOHs doctors improved. Issue 10.2.1/29 Marie Curie to certify death. Issue 10.2.1/30 Verification of Expected Death (VOED) course for Marie Curie Nurses to improve continuity of care.

Equipment

Issue 10.2.1/31 Problems with obtaining equipment in the West of the county Issue 10.2.1/32 There are delays in the supply of equipment

The following recommendations were made:

Suggested improvement Create the national referral centre criteria to reflect the 10.2.1/1 local need Increase the number of nurses working in the OOH service Suggested Improvement to support the technology, psychology of patients needs 10.2.1/2 and their families during end of life and bereavement. Suggested Improvement Reaction from all services during busy periods. 10.2.1/3 Suggested Improvement Review the handover sheet 10.2.1/4 Suggested Improvement Review the assessment process 10.2.1/5 Suggested Improvement Improve the use of the LCP 10.2.1/6

- 151 -

10.2.2 Macmillan Service

Information regarding the Macmillan service was collected using the following methodologies:

• A questionnaire was sent out to 8 Macmillan Service staff, 2 were returned, 25% return response • An awareness interview with the team leader • An interview with both acute hospital based Macmillan nurses • Reviewing service activity data

The following section outlines combined findings from the above methodologies.

Description of the Service

The service aims to provide a seamless supportive service across the East of the county, offering optimum evidence based cancer and palliative management with well informed empowered patients.

Table 1 - Team membership includes:

Position Title Band FTE Team Leader 8a 1.00 Macmillan Nurse 7 5.08 Secretary 3 0.49

The service is provided to patients with a cancer diagnosis, family carers who are registered with East Suffolk GPs. To support health professionals who are caring for non cancer end of life patients the team offers telephone advice. The service provides an expert, specialist nursing service to users and as an advice service to other health professionals and other agencies. They assist patients and their families to make informed decisions about their treatment and the services available. They aim to reduce inappropriate admissions to the acute sector (as an inpatient), Team members stated they had good relationships with the community nursing services and GPs, GSF meetings work well.

The Macmillan Nursing service is located at three community bases at Ipswich (main base), Woodbridge Clinic and Violet Hill Heath Centre, Stowmarket. Clinics are provided at Aldeburgh and Felixstowe Community hospitals, Whitton clinic Ipswich, Framfield House Woodbridge and St Clements Ipswich. The team also visits patients in their homes, Care Homes; nursing and residential homes and sheltered accommodation.

Table 2 - Schedule of Clinics:

Venue Frequency Whitton Clinic, Ipswich Fortnightly Felixstowe General, Felixstowe Monthly

Aldeburgh Community Hospital, Weekly drop in alongside the chemotherapy outreach clinic

Framfield House, Woodbridge Monthly

The Macmillan Nurse described their role as one of providing support, information and guidance to patients and carers from the point of diagnosis as well as the provision of pain and symptom management, psychological support, welfare benefit advice and referral to other agencies and services. Their role links in closely with other clinicians in primary care; the Macmillan Nurse will - 152 -

regularly attend GSF meetings as these provide a forum for discussion and close working with community nursing teams and GP’s. It was reported that there is good teamwork between community nurses, Hospice at Home, GP’s and the Macmillan Nurses. The Macmillan Nurses reported that communication can be limited due to their caseload numbers and small team.

Table 3 - Activity April – August 2010

Apr-10 May-10 Jun-10 Jul-10 Aug-10 Face to face 191 179 204 175 175 Contacts Telephone 144 120 116 115 89 Contacts Referrals 49 57 45 57 50

The Macmillan nurse utilise both the community nursing documentation and the IT System One to record and update their assessments and care plans.

Referral

There is an open referral mechanism to the service using fax, letters or telephone calls to each base which include:

• Seven days a week (including bank holidays) 9am to 5pm • All patients and their families referred from the Acute Sector • Primary Health Care Teams • Statutory and Voluntary Agencies • Patients, Family carers, with consent of patient. • Out of hours the referral can be left on the voicemail or faxed.

All patients are triaged against specific referral criteria. If the patient does not meet the criteria they are signposted to another service or referred back to the GP practice. All referrals are dealt with by the relevant Clinical Nurse Specialist. The CNS receiving the referral will contact the referrer within 210 working days. Urgent referrals that require a response within 24hrs will be directed to the relevant CNS on duty. Referrals received OOHs are directed to either the Hospice at Home team or Somersham Ward at Ipswich Hospital Trust (IHT)

In discussion with the referrer (where appropriate) the CNS will contact the patient and/or family and ensure the PHCT are aware of the referral.

Levels of Intervention

There are four levels of intervention provided by the service and these are as follows:

Level 1 Telephone advice will be available to patients, families and all health care professionals. Level 2 Telephone advice and possible single holistic assessment, where problems are being encountered relating to treatment or psychological adjustment. Level 3 Macmillan CNS will provide initial holistic assessment and advice with support for short periods e.g. diagnosis, recurrence, symptomatic episodes and end of life care. Level 4 Macmillan CNS will only provide ongoing intervention for patients with multiple, complex problems.

- 153 -

It was reported during the investigations that there is a need for more information and detail regarding the patient on referral from other agencies. The team uses various methods to communicate to other agencies involved with the patient Communication with ethnic minorities was expressed as a challenge due to the difficulties finding appropriate interpreters; it was noted that they did not feel they would benefit in any training around cultural awareness.

Discharge

Patients are discharged to the appropriate services when specialist palliative care is no longer needed has been declined, or the patient moves out of the area. A discharge letter is sent to GP. Once discharged, patients can be rereferred if specialist palliative care needs recur.

The following issues were highlighted in relation to service provision:

Access

Issue 10.2.2/1 There is understaffing of the Community Macmillan team

Family and Carer support

Issue 10.2.2/2 There is a lack of carers (especially in rural areas) Issue 10.2.2/3 There is a lack of respite beds Issue 10.2.2/4 Main problem is the shortage of frontline staff carers, nurses and Macmillan team

Ethnic minorities

Issue 10.2.2/5 Communication; cultural and religious beliefs

Issue 10.2.2/6 Funding for an interpreter

Information

Issue 10.2.2/7 Patient notes are inadequate Issue 10.2.2/8 Referrals made to the Macmillan CNS are often sparse and lack adequate detail and information. Issue 10.2.2/9 There is not enough information sent from the hospital on discharge Issue 10.2.2/10 Referrals made to the Macmillan CNS are often sparse and lack adequate detail and information.

The following recommendations were suggested in relation to service provision:

Suggested improvements Provision of uptodate information when patients are 10.2.2/1 referred to the service Suggested improvements Provision of more information when referrals are received 10.2.2/2 from hospital i.e. medications, treatment / care plan

Suggested improvements Increased staffing levels to ensure the Macmillan Team can 10.2.2/3 continue to provide support to patients from time of diagnosis onwards at times of need

- 154 -

10.2.3 Community Matrons

The Community Matron service in Suffolk is county wide and Suffolk PCT currently employs 9 FT matrons who’s location base is consistent with high incidence of very high intensity users of services, across 3 localities. For East Suffolk this service will be superseded by the current development of the Total Care Team

Specific Information regarding the delivery of palliative care by Community Matrons was collected by using the community nurses questionnaire:

• Questionnaires were sent out to the 9 Community Matrons • 5 responses were received , providing a response of 55.5% Details in Annex 6:

Service Provision

The days/hours of operation are between 09:00 17:00 Monday – Friday. Any planned care required over the weekends and out of hours is provided by Local Healthcare Teams. If the care is urgent it is covered by the Out of Hours provider , who are alerted to any potential risk of patients on their caseload via a special form that is logged with OOH by the Community Matron

Caseload

The case management work of community matrons is central to the government's policy for the management of people with long term conditions and these experienced, skilled nurses use case management techniques with patients who meet a criteria denoting very high intensity use of health care. With special intensive help, these patients are able to remain at home longer and to have more choice about their health care.10

The Community matrons actively manage caseloads of up to 50 patients and the case management work of the community matron is an important part of the government’s policy for the management of people with long term conditions. DH 200611

All patients on the caseload have access to Community Matrons for the purposes of:

• Medical, nursing and social assessment of people with complex long term conditions • Formulate individual holistic management plans in partnership with patient and family carer • Education and health promotion using self management tools e.g. Personal Record • Crisis intervention. Diagnosing and providing/organising care and treatment at home therefore preventing unplanned admissions • Admit to/discharge from Local Healthcare Teams/intermediate care or other community beds • Request/authorise transport services • Request diagnostic procedures and interpret and act on results using clinical guidelines • Influence discharge planning from acute care • Admit to acute trust speciality/general ward • Assistive technology • Facilitate palliative and end of life care

10 D.H.2004 The NHS Improvement Plan

11 DH 2006 'Our health, our care, our say: a new direction for community services - 155 -

• Provide individualised care plans and self management plans • Comprehensive discharge plan, which will be sent to the referrer and the GP.

The Department of Health’s commissioning framework for health and wellbeing published in 2007 12supports the role of the Community Matron by:

• Putting people at the centre of commissioning • Understanding the needs of populations and individuals • Sharing and using information more effectively • Assuring high quality providers for all services • Recognising the interdependence between work, health and wellbeing • Developing incentives for commissioning for health and wellbeing • Making it happen – local accountability • Making it happen – capability and leadership

The referral route to the Community matrons is through a referral form to the Single point of Access. Referrals are accepted from Acute trusts, GPs, Community and social care professionals, Voluntary organisations and the Community Hospitals.

Referral Criteria

The referral criteria are as below:

• The patient must be registered with a GP in the Suffolk PCT area • 3 or more comorbidities plus 2 of the following: • 2 admissions in previous 12 months • Top % of frequent home visits • 2 or more falls in past 2 months • 3 or more ambulance callouts in past 12 months • 3 or more A&E presentations in past 12 months • Recently bereaved or showing signs of medical and social decline

All Community Matrons can be contacted by mobile telephone

Communication with professionals

Communication with other colleagues such as GP’s occurs regularly in a variety of ways and the Community Matrons reported as having positive relationships with both General Practice and hospital colleagues. They are satisfied with the communication that the hospital provides however they are not always aware of all the professionals involved in the care of the patient. Additionally within the documentation within primary care, the Community Nurses reported that in the notes left at the patient’s home, it would be useful to have information specific to palliative care needs e.g. advance directives, PPC, DNAR.

Palliative Care

Community matrons have significant contact with palliative care patients with their patients falling into the following categories: 1. Chronic incurable 2. End of Life 3. Palliative

12 Dh 2007 Commissioning framework for health and wellbeing, 2007 - 156 -

The percentage of time spent on specific palliative needs varies from 10 – 70%. If more time was allocated to meet palliative care needs, the Community Matrons reported that this would be dedicated to visiting patients more often or time spent organising other services. The Community Matrons reported that they were involved as part of the GSF within the practices although it was noted that it would be preferable to have fewer GP surgeries to communicate and liaise with. The Community Matrons gain access to specialist palliative care advice either from the GP or Macmillan Nurse during the day or the Hospice at Home, the Hospice IPU or Macmillan Nurse during OOHs.

The Community Matrons care for patients and families with palliative care needs from ethnic minorities and reported that the challenges for these patients included communication, religious and cultural beliefs and some part of the solution was to use the Language Line or patients relatives in order to provide care and information

The Community Matrons noted that they would benefit from additional education and training in the palliative care specifically when caring for patients with dementia or a non cancer diagnosis.

When caring for palliative care patients in the community setting the Community Matrons considered the following as barriers to effective home care

“Shortage of staff in community services e.g. DN’s, commencement or end of life pathway documentation.”

“For some patients with LTC, knowing when to start GSF, and finding the correct time to discuss PPC, and EOL issues.”

When thinking about the patients palliative care journey the Community Matrons considered the following as working particularly well

“Liaison with DN’s, Hospice at home, GP, End of life pathways, pre-emptive prescribing, equipment services, symptom management.”

“Building rapport with patient and family, getting to know them and being able to help them identify deterioration in their condition, so appropriate care can be initiated.”

The Community Matrons raised the following issues in relation to palliative and end of life care:

Issue 10.2.3/1 There is a lack of knowledge for the palliative care of patients with Dementia and non cancer diseases Issue 10.2.3/2 Feel thinly spread in my role due to geographical spread of my caseload.” Issue 10.2.3/3 Not knowing when to commence the GSF in the LTC pathway Issue 10.2.3/4 Shortage of staff in community services Issue 10.2.3/5 Access to early and regular GP involvement Issue 10.2.3/6 Not everyone involved with the patient contributes to the records Issue 10.2.3/7 Not all notes incorporate specific palliative care record requirements Issue 10.2.3/8 The response to the palliative patient is too slow. Issue 10.2.3/9 To much duplication of paperwork Issue 10.2.3/10 Lack of liaison with community staff regarding the patients medication Issue 10.2.3/11 “For some patients with LTC, knowing when to start GSF, and finding the correct time to discuss PPC, and EOL issues.”

- 157 -

Suggested improvements which were raised by the Community Matrons to overcome the challenges of palliative care include:

Suggested Improvement 10.2.3/1 Develop further education for non cancer conditions Suggested Improvement 10.2.3/2 Reduce the number of GP Surgeries each Community Matron covers Suggested Improvement 10.2.3/3 Increase the access of the patients records Suggested Improvement 10.2.3/4 Develop a proactive response to the palliative patients needs Suggested Improvement 10.2.3/5 Increase the time available to communicate with other services Suggested Improvement 10.2.3/6 Develop specific sections for palliative and end of life care in core patient notes Suggested Improvement 10.2.3/7 Better support for dementia patients Suggested Improvement 10.2.3/8 Greater liaison between DN’s and Matrons for prescribing, less duplication of paperwork, GPs to visit earlier in the process and keep up at least fortnightly visits.”

- 158 -

10.2.4 Heart failure team

Information regarding the delivery of palliative care by the community Heart Failure (HF) Team nurses was collected using the following methodology:

• Focus group with three Heart Failure Nurses and one administrative assistant

Service Structure

The Heart Failure team are based at Allington House, Woodbridge Road, Ipswich. Allington House is a NHS Clinic. The team consists of: 2 FTE Specialist Nurses Grade 7 1 FTE Heart Failure Nurse Grade 6 2 0.5 Administrator assistants Job Share

Clinic venues are held across Suffolk to enable and facilitate the delivery of care closer to home. In 2009 the provision was extended to a County wide service. The service operates 8.30am to 5pm Monday to Friday. The nurses provide cover for telephone calls and any urgent coordination and referrals to GPs in line with the community nurse duties that are currently available. The service also has a mobile telephone number as well as the base fax/telephone number. St Elizabeth’s Hospice, Foxhall Road, Ipswich also provide the service with a hot desk.

The team aims to deliver an efficient and effective pathway and enabling earlier treatment to prevent deterioration in those patients who have left ventricular dysfunction. The service also enables admission to hospital or hospice in urgent cases. The Team also liaise with organisations in the county such as Upbeat, Heartbeat, local Cardio Myopathy Groups Family Carers at Crossroads, the Expert Patients Programme and CAB.

Heart Failure Nurse Specialists who are all non medical prescribers follow their patients from diagnosis to the end stage of their lives. They provide monitoring of the patients condition, psychological support, social support for the patient, family carers. They change the regimes / treatments and work in an advanced practitioner role, instigating the decision making from stable heart failure to end stage, including the activation of a Palliative care.

The team will ensure a holistic assessment of the patient and identify needs present in addition to those relating to heart failure. The nurses also provide support and guidance to the families and carers, in some cases carers’ require more time and support. When palliative needs are identified and when other professionals may be involved, the team prefers to remain involved.

Referral

The team works closely with the hospice, the district nurses, community matrons, and the activation of services. They mostly communicate by a phone call rather than referral form. Patients are seen within 4 6 weeks from referral, self referrals are also accepted although a member of staff reported this did not happen very often. Activity is illustrated in Table 1. During the first assessment the Heart Failure nurses perform a lifestyle assessment, clarify if the condition is palliative and outline the choices and options available

A joint programme with the St Elizabeth’s hospice care that includes an 8 education programmes, is offered to patients to introduce them to the concept they are living with a terminal condition. Ideally the team would like to be able to run their Education Support Group more frequently but this is prevented by a lack of resources. The Suffolk wide Heart Failure service has only recently been launched and time is need to ensure that links are made within the whole county to reduce previous inequities in service provision. Additionally the Hearty Living Group which was devised by the team is working well. This is a group that is developed in conjunction with St Elizabeth Hospice Care, a programme is run 3 times a year for 8 weeks. The group members are both patients and - 159 -

family carer of approximately 12 14 attendees. The HF nurses offer lifestyle advice and education in the weekly sessions.

Table 1: Performance activity table. Activity Apr-10 May-10 Jun-10 Jul-10 Aug-10 Face to face 197 156 202 189 182 Contacts Telephone 19 11 12 10 16 Contacts Referrals 24 19 23 27 25

The Heart Failure Service staff feels that the challenges/issues to providing effective home care to palliative care patients include the following:

Education

Issue 10.2.4/1 There is lack of capacity for patients education programmes Palliative care patients are inappropriately sent into hospital for Issue 10.2.4/2 aggressive management Issue 10.2.4/3 GP’s don’t always have the knowledge to interpret or read the cardiac Echo scan in the correct way and will request support and guidance from the team Issue 10.2.4/4 If the paramedics are called they whisk them into hospital Issue 10.2.4/5 Interpretation of the diagnosis by the GP; the patient should be given the choice to see a specialist nurse Issue 10.2.4/6 Often patients miss the point that this is a terminal illness and don’t understand the long term implication

Information

Issue 10.2.4/7 We have a culture of not having the right information

Identification of the patient as palliative

Issue 10.2.4/8 The diagnosis that the patient is dying doesn’t always get made

Access

Issue 10.2.4/9 There is inequity of the service in the West of the county

Issue 10.2.4/10 East hospice has more capacity than the West hospice

Medication

Issue 10.2.4/11 There is a potential for a lack of an accurate diagnosis Issue 10.2.4/12 Above leads to the perception, of the patient and family, is that he has responded well to treatment and made a recovery (not that this is a terminal condition), even where this happens several times.

Choice

Issue 10.2.4/13 There are patients with HF inappropriately being admitted into hospital - 160 -

Coordination and the end of life pathway

Issue 10.2.4/14 There is no advanced care planning Issue 10.2.4/15 There is not enough notice given of the patients impending discharge Issue 10.2.4/16 There is no Suffolk wide DNAR policy

Issue 10.2.4/17 Locums don’t have access to patient’s notes / details

Discharge

Issue 10.2.4/18 The discharge and coordination with the Heart Failure Service needs to be efficient.

The following suggestions for improvements were made:

Education

Suggested Improvement Increase the capacity for patient education programmes 10.2.4/1

Access

Suggested Improvement Increase West Hospice capacity; Hospice at Home, Rapid 10.2.4/2 Response

Coordination and the End of life pathway

Suggested Improvement Involve the HF team in the end of life stage of patients 10.2.4/3 Suggested Improvement Develop the full utilisation of the skills within the HF team 10.2.4/4 The referral pathway does work well e.g. working with the DN Suggested Improvement to put in the SDR. 10.2.4/5

Discharge

Suggested Improvement Improve the discharge coordination with the HF team 10.2.4/6 Suggested Improvement Increase the West H@H service 10.2.4/7

Information

Suggested Improvement Increase the information available to all professionals 10.2.4/8 Suggested improvement There is a need to improve the information given to OOH 10.2.4/9

- 161 -

10.2.5 Community Chronic Obstructive Pulmonary Disease (COPD)

Information regarding the involvement of the COPD nurses in palliative and end of life care was collected by using the focus group methodology.

The Respiratory Nurse Consultant & Clinical Lead Suffolk COPD services, 5 nurses and 1 administrator attended the group.

The COPD team covers the whole of the Suffolk GP registered population and the broad remits of the community service that include:

• Admission avoidance • Supporting the Oxygen Service • Pulmonary Rehabilitation • Palliative and End of Life Care

NHS Suffolk has commissioned the multidisciplinary locally based service to be offered during the hours of 8am – 8.30pm, Monday to Friday, Saturday and Sunday mornings for 4 hours.

Referrals

The team receives referrals for patients with a confirmed diagnosis of COPD and follow the Suffolk Integrated Care Pathway. The referral is via a form which is available on their web site. The team aims to visit patient within 5 days.

Palliative and End of Life

The team stated they are not doing ‘real’ end of life care with a one off palliative assessment. At this meeting the patient is sign posted to other services. The member of the team stated that most patients are not aware what is available in the community for support. The team are aware of many COPD patients who do not visit their GP regularly and visit when they are in general decline.

The team has identified a key nurse with a role in palliative and end of life care. She is not a lead nurse but has a special interest in this are of care and acts as a link for matters concerning COPD patients.

During the focus group the team raised the following issues in relation to care provision for COPD patients:

Admissions

Issue 10.2.5/1 Lots of COPD patients struggle on and do not see the GP despite their general decline and deterioration; patients appear to get used to it

Education

Issue 10.2.5/2 There is a fear of the type of medicines used for palliative care

Coordination

Issue 10.2.5/3 Contractual issue of one visit to Palliative End of life – can also do a lot in one visit and is often seen before however does limit input Issue 10.2.5/4 Challenges is that the palliative care can be years or months Issue 10.2.5/5 Lack of recognition within primary care of the palliative phase of 'COPD'

- 162 -

Access

Issue 10.2.5/6 It is difficult to access the services at the hospice when patients need palliative support and the referral criteria is from “last year end of life” which is difficult to estimate in respiratory disease Issue 10.2.5/7 The team feels the community services are missing a 24 hr type care Issue 10.2.5/8 Challenges we have: are the contractual arrangements agreed of one visit

Discharge

Issue 10.2.5/9 Education skills and competencies required by professionals to approach the patient regarding end of life issues was highlighted as a need

Family and Carer

Issue 10.2.5/10 Crossroads are good but are difficult to get hold of – appear to need notice of 3 weeks to book up which does not meet the patient needs. Issue 10.2.5/11 The distress of carer has with breathing difficult often prompts a call to emergency services out of hours. Issue 10.2.5/12 Many patients in the community are oblivious to what is available – there appears to be no relatives, advocates, carers to sign post – spat visit to ensure they are supported Issue 10.2.5/13 Families panic and call the ambulance – family support important. Many patients are admitted in the night with panic/anxiety. Cannot cope at home and this links with the social isolation that may of the elderly patients maybe experiencing Issue 10.2.5/14 Psychological support of patient & Carer missing coming to terms with the illness – there is a need for “ family support worker – support through the loss” of quality of life and then loss of a loved one

Information

Issue 10.2.5/15 The team are not involved in GSF meetings – Issue 10.2.5/16 Always meet people who are not aware where or who picks up the respiratory palliative care patients, it is difficult getting GP’s to understand who/what COPD patients are in the palliative stage Issue 10.2.5/17 Team and patients are not always aware of what is available therefore not always able to advise the patients all sorts of services are involved Issue 10.2.5/18 The team does not receive information about GSF meetings from the practices to aid communication and information sharing

Medication

Issue 10.2.5/19 There is a need for family support Issue 10.2.5/20 Dr’s to use the appropriate medications.

Equipment

Issue 10.2.5/21 Some equipment(aids) is variable in the speed of getting it into patients homes

- 163 -

Staff made the following suggestions for improvements:

Suggested Improvement Directory of services – easily accessed and updated was 10.2.5/1 suggested Suggested Improvement A rapid crossroad response service 10.2.5/2 Suggested Improvement Provision of 24 hour care 10.2.5/3 Suggested Improvement Clarity required of other community team roles 10.2.5/4 Suggested Improvement Time and resources to support carers 10.2.5/5 Suggested Improvement Involve the team in GSF meetings 10.2.5/6 Suggested Improvement Development of a team plan involving the GP, Community 10.2.5/7 Matron and DN Suggested Improvement Education skills and competencies required by professionals 10.2.5/8 to approach the patient regarding end of life issues was highlighted as a need Suggested Improvement Ensure there are clear criteria available for referral to local 10.2.5/9 resources such as the hospice

- 164 -

10.2.6 Community Neurological Services

Information regarding the involvement of the Community Neurological Nurses (CNN) in palliative and end of life care was collected by using the focus group methodology. All 3 nurses attended the group:

• 2 Neurological & Physical Disability Support Team Members • 1 Parkinson’s Disease Nurse Specialist

The team is based at the Disability Resource Centre in Bury St Edmunds and provides a service to West Suffolk GP registered patients and the Thetford area, delivered at a variety of community settings dependent on the needs of the patient. Operational hours are 9am – 5pm, Monday to Friday excluding Bank Holidays and Our of Hours.

Referral

The team works closely with the hospital, general practitioners and district nurses. Patients who have a known neurological condition can be referred to the team directly by telephone or letter. The service contacts the patient to book appointments; all referrals are triaged for appropriate response and most appointments are offered within 4 weeks and any urgent are seen within 2 weeks or less.

Role in Palliative Care

In many cases the District Nurse will take responsibility for the patient’s care in their end of life stage with the CNN acting in an advisory capacity. The team reported their involvement is occasionally required / requested with the NHS Continuing HealthCare process.

Case Study

A person with frontal lobe dementia living in a residential home has severe swallowing difficulties. He is always at danger of choking or aspirating. He did not meet the required domains for continuing health care funding. All his needs in regard to risk were fully met by a SALT assessment .The staff in the home monitors as fully as possible and supervise all the patients’ meal times.

During the focus group the team described the following issues and improvements:

Family and Carers Support

Issue 10.2.6/1 Patient expectations are high and immediately call 999 services Relatives expectations are high “I’m in charge I will call an Ambulance” – Issue 10.2.6/2 patients husband. Relatives do not know what will be the patients terminal event and are so Issue 10.2.6/3 emotionally closely connected to family. Families do not want to make that final decision to allow their loved ones Issue 10.2.6/4 to die. Issue 10.2.6/5 There is lack of support for family and carers after death Neurological events are often different from malignancy with often brutal Issue 10.2.6/6 effects which can be frightening. Carers become carers when they were a member of the family e.g. Issue 10.2.6/7 husband or wife do not realise they are carers as it becomes natural and are therefore not always offered support. - 165 -

Issue 10.2.6/8 Carers become exhausted Many patients with neurological conditions are not mobile therefore are Issue 10.2.6/9 heavy work. Carers are not good at accessing information of what is available, they do Issue 10.2.6/10 not access for themselves. Issue 10.2.6/11 Inability to find respite care, poor availability to give carers a break No 24 hour access for carers/families to be supported e.g. middle of night Issue 10.2.6/12 panic. Issue 10.2.6/13 Families ring 999 because of the ease for help Issue 10.2.6/14 There is an expectation that the service is 24/7

Issue 10.2.6/15 Inability to find respite care, poor availability to give carers a break

OOH

Issue 10.2.6/16 OOH staff have a lack of local knowledge of the patient

CHC

Issue 10.2.6/17 Inconsistency in CHC decisions Issue 10.2.6/18 The staff on the frontline have to take the negativity from families Issue 10.2.6/19 Difficult situations arise to the provision of advice if patients self funders

Transport

Transport difficulties to get to hospice day centre – no transport contract Issue 10.2.6/20 to take patients to hospice.

Information

Acute sector – staff often has no knowledge of patients/wards when Issue 10.2.6/21 approached

Access

Issue 10.2.6/22 Lack of personal continuing services by local GP / practice. Cumbersome system for relatives to go through GP then OOH then Issue 10.2.6/23 Hospices. The team has to cover patients from WSHT that are Norfolk PCT Issue 10.2.6/24 population Issue 10.2.6/25 There is often lack carer support in the home and community. Issue 10.2.6/26 Increased demand from families is when they are on their own in OOHs.

The following recommendations were made:

Suggested Improvement It maybe helpful to patients if NHS Continuing Healthcare team 10.2.6/1 explains to clients and illustrate the tool. Suggested Improvement Recognise the time factor involved in the NHS CHC process 10.2.6/2 Suggested Improvement There is a need for 24 hour access to services and information 10.2.6/3 Suggested Improvement Provide a service that includes 24 hour local GP 10.2.6/4 - 166 -

Suggested Improvement Centralise Information 10.2.6/5 Suggested Improvement There should be more staff at night 10.2.6/6 Suggested Improvement Increase the carers support 10.2.6/7 Suggested Improvement Begin palliative education at the start of the neurological patients 10.2.6/8 diagnosis

- 167 -

10.2.7 Suffolk Community Refugee Team (SCRT) Homeless Outreach Project (HOP)

The information regarding the involvement of the SCRT and HOP with palliative and end of life patients was collected during a focus group held with members from the teams including the department head of the services, a general practitioner, a nurse practitioner, 2 support workers and a receptionist. The two services for marginalised adults are managed by the departmental head of specialist services for Suffolk Community Health and share the same office facilities.

SCRT

The Suffolk Community Refugee Team based in St Helens Street, Ipswich works with asylum seekers and refugees in Suffolk. The core hours for the service are: Tuesday, Wednesday and Thursday between 10.30 – 1.00 and 2.00 – 4.00 and it is a community needs based service set up to respond to the changing community profiles within the county. Members of the focus group suggested there is published evidence that suggests asylum seekers and refugees come across barriers in accessing health care and the service sets out to address these.

Broadly the team aims to:

• Develop the public health role of the team in relation to refugee communities in Suffolk through needs assessment, health promotion activities, data collection, and provision of culturally appropriate health information and advocacy for policy and service development. • To facilitate the development of skills, knowledge and expertise within mainstream services to effectively meet the needs of asylum seekers and refugees through acting as a resource for information, advise, examples of best practice and training • To assist in promoting wellbeing, relieving distress, advocating for care and providing specialist services for the mental health and social wellbeing of asylum seeker and refugee individuals, families and communities • To work in partnership with Primary Care / Mental Health services and with local refugee and voluntary agencies to develop services, activities and interventions to meet emotional / mental / social wellbeing needs of refugee communities, families and individuals and facilitate effective care and integration • To provide an initial assessment for newlyarrived asylum seekers and refugees of individual, family and community needs to facilitate referral and integration into the appropriate services

Although the service covers the whole of Suffolk, demand for the service arises mainly in the Ipswich area; there are no outreach clinics. The clients are mainly young and currently there are only a small number of EOLC clients. The service meets the needs of clients that are not within the remit of the GP’s such as liaison with immigration, housing, social care, provision of an interpreter. Additionally the service will liaise with the appropriate organisations and charities to obtain other articles such as food parcels etc.

Referral

The team accept referrals from many sources and this includes self referral, however their client group often fall out of mainstream services and will link directly with the acute hospital for health care. This is reportedly because they do not often have a chance to be seen or cared for in primary care; the estimated number directly accessing health care in this way is 30%. This was noted to be due in the main to the lack of skills and expertise required to deal with the client base particularly in relation to drug and alcohol misuse. There are often misconceptions relating to this client group for example “drug users do not need pain relief” while some healthcare professionals think they will use medication inappropriately.

- 168 -

Health Outreach Project The HOP is based in the same building as the SCRT and it is a health care team specifically for the homeless or those living in temporary accommodation in Ipswich. The team is a resource which provides an alternative approach to the health problems of this patient group with the ultimate aim of integrating the person back into mainstream services. The service is provided Monday to Friday, 9am to 5pm plus with additional evening clinics.

Referral

The direct referral route is via the base or the outreach staff and this can be either self referral or those made by other agencies. Clients are introduced to the service through Clear Springs (an organisation which works with Central and Local Government and other organisations to provide innovative accommodation based solutions for a wide range of clients).

SCRT and HOP Palliative Care Provision

The main core of service provision for palliative and end of life patients is provided by the local GPs and the SCRT and HOP will receive referrals from the very marginalised groups, such as homeless patients who may be discharged home but have no fixed abode; one example noted was that of a patients discharged “home” to a graveyard as his main domicile. Another experience described included the discovery of a client's body by the postman a month after death “this was their end of life”. The team will attempt to support the breakdown of barriers that may exist between the clients and mainstream services act as a bridging service. It was reported that there are often concerns around who is going to pay for treatment.

The group reported that these patients are often judged "before they open their mouths." There are often challenges before they receive care as they are "interrogated" before they are allowed to register with GPs. It was reported that patients/clients often have an acute episode before receiving care such as the example of a 30 year old female patient who had a stroke. Additionally within this client group the largest numbers of deaths are amongst patients diagnosed with Hepatitis C (40%) who will often die of acute disease first. Reportedly this group in addition to migrant workers will not receive mainstream services. In relation to drugrelated deaths, families often have many unanswered questions. The group reported instances where families have contacted to various bereavement services but have not received appropriate support and empathy in relation to the specialist area as there is a gap in the knowledge of professionals.

It was also reported that there are misconceptions associated with drug/alcohol related deaths and diseases, particularly end stage liver disease and in some cases the attitude to alcoholic patients was thought to be unsympathetic.

The team will liaise with the hospice at home team until palliative and EOLC care is established although it was noted that generally team members are not contacted to contribute to patient reviews or to attend practice GSF meetings nor are they asked for advice. Over all there are still gaps in the sharing of information with System One users and data held on the spine a central point of communication is required. Furthermore it was noted that there have been incidences where assessments have been conducted in English but the client didn't understand and so help was not offered.

The team also provides education, training and shadowing which was noted to have been effective in achieving cultural changes within their new teams and changes in attitude to this client group. They would like other professionals to take part in a rotational training programme to further enhance this although this would require resources

- 169 -

The SCRT and HOP focus group raised the following issues in relation to palliative and end of life care:

Issue 10.2.7/1 Inequity of access to Primary care services. Often patients do not have a chance to be seen or cared for in primary care and as a result go directly to acute hospital Issue 10.2.7/2 This patient/client group often fall out of mainstream services Issue 10.2.7/3 No key worker identified.

Issue 10.2.7/4 In the community A client's body was discovered by the postman a month after death "this was their end of life" Issue 10.2.7/5 There are often concerns around who is going to pay for treatment Issue 10.2.7/6 There is a need to change the culture within mainstream services so that they recognise this client group Issue 10.2.7/7 Mainstream services staff lack the experience and skills to deal with the client base eg drug/alcohol related experience and are not aware of their requirements Issue 10.2.7/8 Lack of understanding of needs of marginalised groups Issue 10.2.7/9 Some healthcare professionals think that drug users will use medication inappropriately Issue 10.2.7/10 There are often challenges before they receive care as they are "interrogated" before they are allowed to register with GPs. Issue 10.2.7/11 Migrant workers will not receive mainstream care services Issue 10.2.7/12 Patients/clients often have an acute episode before receiving care Issue 10.2.7/13 Families are not offered the same empathy as other patient groups Issue 10.2.7/14 Families have been left unsupported in bereavement as there is a gap in knowledge amongst professionals around specialist areas such as drugs Issue 10.2.7/15 There are misconceptions associated with drug/alcohol related deaths and diseases, Issue 10.2.7/16 Lack of health screening

Issue 10.2.7/17 Unsympathetic attitude to alcoholic patients Issue 10.2.7/18 Team members do not get called in to contribute to patient reviews or to attend practice GSF meetings nor are they asked for their advice.

Issue 10.2.7/19 Client group often have no carers. Issue 10.2.7/20 Assessment conducted in English which client didn't understand so help wasn't offered Issue 10.2.7/21 Lack of resource to support a formal rotation training programme Issue 10.2.7/22 Language used by professionals, as medics, often use large words – did not ask if they understand. Issue 10.2.7/23 Not all GPs engage with this client group Issue 10.2.7/24 Lack of sharing information / data with system One users/care spinal data; gaps remain in communication Issue 10.2.7/25 There is a general lack of information sharing

The following improvements were suggested by the HOP and SCRT in relation to palliative and end of life care for their clients/patients:

Suggested Improvement Awareness training required for all staff groups of the needs of 10.2.7/1 this client group at end of life stage Suggested Improvement Develop a rotation training programme 10.2.7/2 Suggested Improvement Resources to support a rotational training programme 10.2.7/3 - 170 -

Suggested Improvement Involve the SCRT / HOP team more actively in the palliative 10.2.7/4 and end of life pathway for this client group Suggested Improvement Include mainstream service staff team members in the care of 10.2.7/5 the client group in palliative and end of life care cases Suggested Improvement Develop a central point for patient information 10.2.7/6 Suggested Improvement Develop patient hand held records so the patients /teams 10.2.7/7 know what has occurred Suggested Improvement Share System One with other service users 10.2.7/8 Suggested Improvement For GP’s to utilise the SCRT / HOP Teams to support their 10.2.7/9 engagement with this client group

- 171 -

10.2.8 District Nurses

The Adult Provider Directorate, SCH delivers care through 3 locality teams across Suffolk In total there are 265 Community Nurses. Each locality has a community lead responsible for clinical standards and performance across district nursing services, community hospitals and rehabilitation services. The localities are:

• Locality 1 Bury St Edmunds Local Care Team • Locality 2 Eye Local care Team • Locality 3 Coastal Aldeburgh Local Care Team

Information regarding the delivery of palliative care by district nurses (DN) in Suffolk was collected using the following methodologies:

• 3 Focus groups • Shadowing of two community nurses whilst providing care to patients within Suffolk • Email Interview with Locality service manager • Process mapping for the following:

o ordering equipment, o organising packages of care, o referral to other services.

• Questionnaires sent out to all District Nurses

The following section outlines combined findings from the above methodologies and information regarding the structure of the service. The investigation focused on: their caseload; their team; communication with GPs; communication with secondary care and other healthcare professionals; organising care; caring for patients from an ethnic minority group; education needs; strengths and challenges in providing palliative care. It is important to note that where process maps are presented, these are based on descriptions given by staff. The results of the questionnaire are presented in detail in Annex 11.

During the information gathering, district nurses expressed a great desire to provide the best quality of care for patients and their carers. They felt that as a service they were responsive to palliative care patients needs and there was a willingness and determination to meet the preferences of care for palliative care patients and their carers. Nurses gave examples of how they worked long after their attributable hours to fulfil the care for their patient.

There were several areas where the DN’s felt that provision and delivery of care worked well and these included some of the excellent resources that were available for palliative patients, areas where communication and coordination was effective i.e. with GPs and liaison with specialist services

Service provision

The district nursing service is made up of district nurses, community nurses and healthcare assistants and is predominantly a domiciliarybased community nursing service. The focus of a Community Nurse’s work within the Local care team model is aimed at those people who are unable to travel to the GP Surgery for their nursing health care requirements, or where assessment and treatment in the home is more appropriate. The work of this service is to assess, plan and deliver nursing care and to support patients and carers in their own homes. The Community Nurses work closely with other members of the Primary Health Care Team and multiple agencies to ensure patients and carers needs are assessed and met and that services are delivered in an integrated manner. Patients are usually housebound or have a nursing need. District nurses visit

- 172 -

patients living at home, in extra support accommodation or residential homes. In Suffolk DN’s are not responsible for case managing residents in nursing homes.

The aims of the service are;

• To provide a responsive, holistic service to meet the identified health needs of the individual and their carers, in partnership with them. • To provide an interdisciplinary approach to health and social care based on teamwork, collaboration, health promotion and partnership. • To care for individuals according to their specific physical, cultural, spiritual and psychological needs. • Deliver care within a framework that encompasses research based knowledge to provide an effective and equitable service. • Aim to share knowledge and skills targets to meet the specific needs of the community and the individual. • Nursing care supports patients and carers to enable them to cope with ill health and disability and allow them to reach their optimum quality of life whilst maintaining respect and dignity.

The routine hours for the service are around 08:30 – 16.30 (seven days per week, 365 days per year) across the county. Out of hours services are provided by twilight teams and overnight teams. There is currently a review of out of hour’s services being undertaken by Adult Provider Services as there is a difference in availability and models of care provided in the different localities.

The teams have a variety of clinical expertise; nursing care may include any combination of the following:

• Support to patients and their carers • Acute illness post operative wound care, stoma care, rehabilitation support • Chronic illness symptom prevention and control, monitoring and maintaining patients optimum health • Palliation monitoring and building up good rapport with patient while well • Terminal illness providing end of life support, symptom control and coordinating carers to enable patients to die at home. • Bereavement providing support for bereaved relatives and carers, signposting to other agencies when required i.e. Relate, • Continence care/ Catheterisationhelping patients maintain continence with catheters, pads and improving bladder/bowel control • Diabetic caremonitoring diabetes through advise, blood sugar monitoring and administration of insulin • Healthy Living/Health Promotion Adviceproviding appropriate information and referrals for weight control, healthy skin, diet, exercise etc • Management of Central Venous Lines, Peripheral Lines and rehydration therapy • Parental/enteral feeding/TPN administration supporting carers to administer feed and drugs via tubes, administering TPN • Rehabilitation care following Cerebral Vascular Accident • Risk Assessment –identifying any risks in the home i.e. manual handling, nutrition, pressure ulcer risk • Specialist Community Leg Ulcer Clinicsproviding Doppler assessment, full leg ulcer assessment and treatment using appropriate tools such as compression therapy • Syringe Drivers maintaining continuous drug administration via an syringe driver, assisting patients to provide their own maintenance • IV antibiotic therapyadminister Intravenous antibiotic therapy in the home • Wound care (including pressure care)provide all aspects of wound care including vac therapy, compression therapy, and topical wound care. - 173 -

Map 1: - Community Nursing Management Nursing Structure

SCH CEO

Head Of Adult Services East / West

Locality Leads diving East and West of Suffolk into 3

Community Lead for each Local Care Team

District Nursing Sister for each Community Nursing

Community Staff Nurse

Health Care Support Worker /Generic Worker

- 174 -

Caseload

The majority of district nurses have a case load of between 50 and 200 patients. From the overall case load approximately 20 to 50 patients will be in need of palliative care. For the majority of district nurses this small part of the overall case load occupies up to 40% of their time. If more time was allocated to meet palliative care patient’s needs, they would have spend it on a variety of tasks including, assessment and care planning; time required to organise other services; visiting patients more often and meeting their individual needs and time spent with families and carers after death. It was reported that within some of the district nursing teams they find the additional work pressures to offer palliative and end of life care very stressful due to shortages of resources such as staff and time.

Many of the district nursing teams cover large geographical areas with a high proportion of those covering rural areas. This can impact on the provision of service due to time spent travelling between patient’s homes; this is increased during winter months because of driving conditions. District nurse’s case loads can also be affected in summer months because of the high numbers of visitors to the county i.e. holiday makers. This is particularly apparent for teams working along the coast.

District nurses raised the following issues in relation to case load, please note that these can be individual staff perceptions:

Issue 10.2.8/1 Staffing levels are not always at the level required for palliative care Time available is limited to spend with patient as you may be only trained Issue 10.2.8/2 nurse on duty Issue 10.2.8/3 Lack of resources (day and out of hours) Nurses covering a large geography and have a busy caseload which Issue 10.2.8/4 impacts on time spent with patients Issue 10.2.8/5 There is a lack of time Time constraints of palliative care patients Issue 10.2.8/6

District nurses suggested the following recommendations in relation to case load;

Suggested Improvement Early involvement of district nurses with patient and family 10.2..8/1

District and Community Nursing role and provision of palliative care

The District Nurse is a member of a community team where care is provided as part of a multidisciplinary approach to all conditions including those who have any condition leading to end of life stages. The DN will be the main provider of care and will often be the lead however a member of a focus group stated “it very much depends on the patients need”

This care will include symptom control, organising comprehensive packages of care in collaboration with different professional groups and organisations, the provision of equipment and providing support and advice for patients and family carers. District nurses responding in the questionnaire commented that they would prefer to be involved in the patients’ disease journey earlier. The lateness in referral can cause delays in organising the appropriate level of care causing additional stress for patients and relatives.

- 175 -

Communication with GPs

The majority of DN’s have regular meetings with their GPs but there is a variation in how frequently the meetings are held. The frequency of the meetings is mainly monthly although in some cases every three months, a fifth of respondents felt meetings should be more regular.

In practices where the GSF has been implemented, this has improved communication between DN’s and GPs. Nearly all of the respondents to the questionnaires stated that their GP practice works with the GSF, the other respondents said the GSF was not being correctly used due to time constraints or specific patient location.

Recommendations by the respondents to improve communication with GPs include:

Suggested Improvement Improve the system of documentation 10.2..8/2 Suggested Improvement Earlier identification and referral of palliative care patients 10.2..8/3 Suggested Improvement Regular planned meetings. 10.2..8/4 Suggested Improvement Nominated GP to coordinate all palliative care or at least 10.2..8/5 continuity of care per patient Suggested Improvement Having a regular separate meeting with GPs purely to discuss 10.2..8/6 palliative care patients. Suggested Improvement Planned monthly meetings – recently these seem to have 10.2..8/7 ceased. Suggested Improvement More information from GP. 10.2..8/8 Suggested Improvement GP’s to set up palliative care drug boxes. Especially over the 10.2..8/9 weekend Suggested Improvement Willingness of GP’s 10.2..8/10 Suggested Improvement Education for GP’s relating to preemptive measure required 10.2..8/11 and the importance of the therapeutic relationship that many people need

Communication with secondary care

DN’s would like to be informed if a palliative care patient under their care is discharged from hospital. This does not always happen currently, especially for patients that do not have care needs in the community. The way that the information reaches the DN’s is not standardised and in some cases is written, in other cases verbal, sometimes a phone message and in some cases both written and verbal. In half of the cases the details received do not always provide the necessary information relating to the patients palliative care needs or the care packages arranged by the hospital team. Regarding other documentation received from the hospital such as the discharge summary, prescription form and the consultant’s letter sent to the GP, only approximately half of the number of the DN’s had access to them.

During the shadowing of a DN she reported that often the communication to the families is given via the DN. Several respondents stated the information received is often scant and inaccurate. District nurses felt that there should better discharge planning from acute trusts with earlier involvement of community nursing teams Suggestions by the respondents of the type of information that they would like to receive from the hospital upon discharge of a patient included the following: - 176 -

• Diagnosis • Prognosis • Care received in hospital including diagnostic tests • Medication • Care planned including packages of care • Nursing input required • Equipment • The patients condition and awareness of diagnosis level of support provided, needed for the family and reasons for the admission.

Following the patient identification for discharge from the local hospitals a referral is made via the SPA and the DN direct if palliative or end of life stage, by fax to SPA and telephone call to DN. The Marie Curie Discharge Nurse are often involved in this process. The DN is booked after an assessment of need and risk management by the hospital. The DN communicates with other services and the family by the telephone.

Process Map 1 Discharge from hospital referral to District Nursing Service

- 177 -

District nurses raised the following issues in relation to communication with secondary care:

Issue 10.2.8/6 Discharge planning, hospitals will often give 9am – 5pm number to patients but not the OOHs number Issue 10.2.8/7 Hospital to community communications regarding whether the family / care package is in place and patients is discharged anyway Issue 10.2.8/8 Lack of SDR on discharge from Addenbrookes Issue 10.2.8/9 Hospitals don’t talk with patient and families about how things may go, advance care planning / reassurance Issue 10.2.8/10 Patients are not aware of diagnosis Issue 10.2.8/11 PPC not in home

District nurses recommendation in relation to communication with secondary care:

Suggested Improvement Someone who can see through transition from hospital to 10.2..8/12 home

Suggested Improvement Better forward planning, especially for discharge 10.2..8/13 Suggested Improvement Hospitals to be able to book Marie Curie 10.2..8/14

Communication with other professionals

The provision of care for palliative care patients in the community is often provided by a variety of different organisations and professionals. The majority of DN’s are not informed or only sometimes informed if another professional visits the patient or when additional services have been arranged by someone else.

District nurses raised the following issues in relation to communication

Issue 10.2.8/12 There is a lack of time for communication Issue 10.2.8/13 There is not enough timely information sent for the referral Issue 10.2.8/14 Lack of continuity of care Issue 10.2.8/15 Not always being aware of palliative patients until last stages. Issue 10.2.8/16 Lack of communication between MDT, Issue 10.2.8/17 Lack of communication between specialties Communication between DN & Hospice at Home nurse has been altered Issue 10.2.8/18 by having a third professional being involved Issue 10.2.8/19 Communication with Marie Curie Nursing Service when want to speak to a nurse but concerned about waking them up during the day if they have worked the night before

Issue 10.2.8/20 Unrealistic message being given

Issue 10.2.8/21 Macmillan nurses go to the GSF meetings but not DN’s as a rule

The following recommendations were made to improve communication:

Suggested Improvement A complete summary of all involved professionals involved 10.2..8/15 in the patients care

- 178 -

Suggested Improvement 10.2..8/16 DN’s should always be informed of planned visits Suggested Improvement Documentation – ongoing communication documents in 10.2..8/17 home notes Suggested Improvement All on the same System One domain so can access notes 10.2..8/18 so avoid visiting Suggested Improvement To have a list of all different organisations available for 10.2..8/19 providing palliative care Suggested Improvement Everyone to write in notes including Hospice at Home / 10.2..8/20 Community Macmillan

Patient assessments and documentation

To support a palliative care patient at home, an assessment of their needs requires completion. The teams respond on the same day if necessary. The Single Assessment Process (SAP) is used within Suffolk and this should be completed by the first health or social care professional to recognise that a patient may require additional support. The assessment usually takes place in the community or in hospital following an admission. In the acute hospitals the process of completion varies between hospitals and even wards. There are good working relations between district nursing teams and social services teams and where possible the SAP is completed during a joint assessment. In the community this assessment is again ideally carried out by representatives from both professions.

Access to palliative care services and advice

Most nurses reported that they have good access to specialist palliative care services and advice usually via the community Macmillan nurses, the hospice or hospice at home team. During OOHs advice is accessed in the main from the hospice at home service. The majority of DN’s also reported that they have access to other specialist nurses for patients with heart disease, respiratory patients or those with diabetes

Organising the provision of care

The DN is responsible to organising and coordinating packages of care to support palliative and EOLC patients and this is a process the DN’s find time consuming, complex and often unproductive. In some instances staff need to spend several hours to organise the care for patients; one nurse commented “can spend an entire afternoon trying to sort package”

Additionally there is a perception from patients, carers and other members of staff that 24 hour care is available at home and hospitals will promise Marie Curie or the district nurse at specific times

Obtaining a healthcare package of care

All patients with complex care needs are assessed for continuing healthcare funding using the Decision Support Tool, followed by a multidisciplinary assessment which is submitted to the NHS CHC team for funding. This document has been described by many as time consuming. Priority is given to all palliative care patients via fast track NHS CHC checklist application; if the patient is eligible the DN completes the full fast track document, faxes the document to the NHS CHC Team and also telephones. The decision is made the same day. If a palliative care patient requires CHC funding to facilitate discharge, social services will provide care and funding whist the decision is made. The payment is then back dated and refunded when approved.

- 179 -

The purpose of fast track applications is to speed up the process to enable quicker decisions and provision of care. When the funding is confirmed the CHC organise the package and informs the DN and family.

- 180 -

Process Map 2: Obtaining a Care Package in the Community (District Nurses)

- 181 -

District nurses raised the following issues in relation to organising packages of care

Issue 10.2.8/22 Lack of Marie Curie nurses and restrictions on budgets

Issue 10.2.8/23 Lack of continuity of GP care

Issue 10.2.8/24 Family have declined visits and then patient suddenly deteriorates and they are not known to the team Issue 10.2.8/25 Lack of social care our practice area is very rural Issue 10.2.8/26 Barriers are put up by families. Issue 10.2.8/27 We still lack adequate care to maintain and support people who live alone or do not have adequately family support they need. Issue 10.2.8/28 The carers can be brilliant but are not always appropriately trained for end of life care. Issue 10.2.8/29 At a critical time in their lives people often lack the additional support that could make all the difference, often with practical tasks like cleaning and shopping. Issue 10.2.8/30 ACS is often slow to respond and struggle to meet people's needs. Issue 10.2.8/31 We often have to maintain people with health services but this can't be sustained for long enough and then patients have to be transferred to other agencies which cause distress. Issue 10.2.8/32 General care availability poor in this area Issue 10.2.8/33 Hospitals need to understand that they cannot promise Marie Curie or that DN will be there at 9am Issue 10.2.8/34 Hospice can’t refer to Marie Curie even if known to patient Issue 10.2.8/35 Need leeway with assessment regarding environmental risks / lone working Issue 10.2.8/36 Need more information Issue 10.2.8/37 In rural areas it’s difficult to get carers in. Issue 10.2.8/38 Discharge planning should include CHC process Issue 10.2.8/39 Difficult to get day time shifts Issue 10.2.8/40 Discharge nurse can refer to Marie Curie but not other professionals Issue 10.2.8/41 Access to care packages to be quicker

District nurses made the following recommendations for improvement with regard to packages of care:

Suggested Improvement Sometimes need more availability of carers to help to support 10.2..8/21 in early unpredictable terminal phase Suggested Improvement Allowing us to use Marie Curie Service more often than 2 10.2..8/22 nights before going to CHC Suggested Improvement More hospice carers to support patients where social care is 10.2..8/23 difficult to access Suggested Improvement Hospice at Home carers, increase in numbers 10.2..8/24 Suggested Improvement More Marie Curie Staff 10.2..8/25

- 182 -

Ordering Equipment

Sometimes a patient requires equipment to support a safe discharge or help maintain their safety and independence at home. District nurses are responsible for ordering equipment deemed as nursing. This includes a hospital bed and pressure relieving mattress or cushions. The process for organising equipment is highlighted in the process map below

The district nurse will assess a patient for equipment alone or in partnership with a therapist .The equipment is identified in the equipment catalogue and ordered on line using the CES system. This has to be authorised by a senior manager. The CES informs the family of the delivery timescale and delivers the equipment. The CES tries to prioritise delivery for end of life patients. Members of the group stated delivery is slower in the West than the East of the county.

Process Map 3:

Ordering Equipment in the Community (District Nurses)

Patient need identified

Single or joint assessment carried out DN / therapist

resources not Identify equipment Sign off by senior available Rebook Satellite stores (for in catalogue manager small items) DN / therapist

Order online using CES system DN / therapist

Inform family of delivery timescales CES

Deliver equipment

CES For EOL try to prioritise up to a week. Equipment delivered

For EOL West is slower than East

- 183 -

District nurses raised the following issues in relation to equipment:

Issue 10.2.8/42 Obtaining drugs for syringe drivers at short notice. Issue 10.2.8/43 Getting equipment in a timely manor from CES Continence pads can take ages to access. Issue 10.2.8/44 Getting equipment in at short notice if bed is needed urgently always causes a problem. Issue 10.2.8/45 There is often insistence on hospital bed but patients want to be in their own bed Issue 10.2.8/46 Hospital will demand a high spec bed Issue 10.2.8/47 Manual handling has to be carefully assessed Issue 10.2.8/48 When patients dies, relatives want to get rid of equipment as soon as possible, collections only occur once a week and the relatives have to liaise directly wit the equipment service Issue 10.2.8/49 Equipment provision is slower in the west than in the east

District nurses recommendations following in relation to equipment:

Suggested Improvement Better provision of beds and equipment 10.2..8/26

Marie Curie Nursing Service

District nurses can refer to the Marie Curie Nursing Service for palliative care for end of life patients, irrespective of diagnosis. Referrals are made via the Marie Curie Referral Centre, Initial referrals are made by phone and the process is estimated to take around 15 minutes. The service does not allow referrals to be made directly between Marie Curie Nurses and District Nurses .The call centre is open between 8am 10pm. The Referral Centre gives the DN a telephone number of the MC Nurses once they have been allocated to enable a handover prior to the visit. Focus group members stated it is difficult to discuss the patients with nurses who are asleep during the day when they have been at work during the night shift.

Obtaining a social care package of care

If a district nurse identifies that a patient requires additional social care at home; a referral to social services is made for a social worker assessment. The referral is carried out via Customer firsts a single point of access for all adult social services referrals. The social worker will assess the patient, (this can take up to within 2 weeks) and document the assessment. The District Nurse is not always aware that this has taken place.

Following the assessment; if a patient requires a home care package this is organised by the social worker via a care coordinator in social services. The care coordinator sends a purchase order to one of the domiciliary care providers that have a block contract with adult social services.

Out of hours

Out of hours district nurse support is provided by a hospice at home, twilight service and an overnight service. There are Rapid Response Teams available in the east and west of the county and information is provided in a separate section of this report. Most respondents were very positive about the hospice at home service. Numerous respondents highlighted the need for improved communication between the patients own GP and the OOH services. Patients and carer are told to contact the DN’s, GP, hospice, Macmillan nurse or community Matron during the day. During the - 184 -

evening and OOHs patients contact Hospice at Home and OOHs services as well as the DN evening service and the Rapid Response teams.

Other Services Process Map 4: Description of links with other services Patient need identified

DNs signpost DNs make other patients and services aware of families to other patient services

Marie Curie Local healthcare Crossroads Macmillan Nurses Hospice Day Care Nurses team colleagues

The following issues were raised in relation to OOHs services:

Issue 10.2.8/50 In the Out of hours there are not enough nursing palliative care nurses Issue 10.2.8/51 Occasionally GPs not been supportive in ensuring that 'end of life' medication is prescribed got the patient, especially over weekends/bank holidays. Issue 10.2.8/52 Unrealistic wishes/demands for treatments/care. Issue 10.2.8/53 Availability of night sits Issue 10.2.8/54 Communication after visiting; OOHs doctors reports don’t always come to us Issue 10.2.8/55 Messages for oncall GP are not always forwarded to DN service promptly Issue 10.2.8/56 When drugs need to be altered and collected from pharmacy the process takes too long Issue 10.2.8/57 Overnight oncall GP, (Harmoni) patients are told there will be a 56 hour wait regardless whether they are a palliative care patient Issue 10.2.8/58 OOHs doctors do not carry medication Issue 10.2.8/59 Not all medications are written up when patients are discharged from hospital Issue 10.2.8/60 Hospice at Home have carers, but very limited Issue 10.2.8/61 Gaps in provision at weekends, no 24/7 service

The following recommendations were suggested in relation to OOHs services:

Suggested Improvement Better communication between own GP and OOHs GP 10.2..8/27 Suggested Improvement Access to own GP 10.2..8/28 Suggested Improvement GP visit, need a quick response 10.2..8/29

- 185 -

Suggested Improvement Additional available support like Marie Curie freely available 10.2..8/30 OOHs to support carers / relatives Suggested Improvement 24hour palliative care support from nurses 10.2..8/31 Suggested Improvement Hospice at Home team in all areas 10.2..8/32 Suggested Improvement More night nurses from Marie Curie 10.2..8/33 Suggested Improvement More staff specialising in palliative care 10.2..8/34 Suggested Improvement Specialist nurses or rapid response services 10.2..8/35 Suggested Improvement Access to SDR drugs 10.2..8/36

Medication

To support a palliative care patient at home, medication is often required. If a patient would benefit from a syringe driver to optimise symptom control, the district nurse is responsible for managing the administration of drugs via this route. The GP is responsible for the prescription of the medication. Selected community pharmacists in the East of the county hold a stock of “Just in Case” drugs for palliative and end of life care. A nurse stated when drugs are altered and require collection from a pharmacy the process takes to long for the patient who has pain. Presently there are no resources to expand this service to the West.

Patients are sometimes discharged from hospices with a selection of “Just in Case “drugs and in OOHs the medical staff are responsible for the prescribing of the medication. The providers, Harmoni have a controlled drug license. Access to syringe drivers was identified as an issue and discussions at the focus group revealed families have gone to the hospice to collect medication and incidents medications being sent home with the patient but incorrectly written up.

Care homes

Suffolk has a large number of care homes due to its ageing population and the provision of care in Care Homes is covered in a separate section of this report

Caring for patients from adult marginalised groups

Not all DN’s have patients on their caseload that are from an ethnic minority background. Most of the respondents answered that it was there are three elements that provide challenges, communication, religious beliefs and cultural beliefs although it was reported that communication was the main issue. The majority of the respondents were aware of the applied language interpreter service as a means to assist them to overcome these barriers and used family members as a resource.

One District Nurse had recent experience supporting a traveller family who had a member at the end stage of their life.

- 186 -

Case Study

A lady family carer was looking after her mother who was in the palliative stage of her disease. The mother was put to bed for a year. The daughter had previously cared for her father. The carer did not work and can therefore was able to give 100% support for her mother who was living in a caravan.

The daughter could not read and other family members helped with this. Writing down instructions was difficult for her e.g. telephone numbers. The DN explained the team managed to get a hospital bed in the caravan which was lovely and warm. The mother died at home with good support from GP and family carers.

The DN did not get involved in the end of life stage of her life – no specialist team went in to support patient who was on 24hr oxygen. The family had a very high demand on the service.

The DN offered one visit to the family after death.

Nearly all respondents to the questionnaire thought they would benefit from further training in cultural awareness.

Issues raised in this case are:

Issue 10.2.8/62 Patient, family and carers healthcare expectations vary according to culture Issue 10.2.8/63 Not all patients, families and carers can read and write Issue 10.2.8/64 Communication can be difficult to supply basic information Issue 10.2.8/65 Lack of structured support led to higher demand on other services

Education needs

The majority of DN’s have received training in palliative care; the responses from questionnaires indicate that nurses consider they are more effective in caring for patients in some areas more than others. For example, nurses consider they are most effective when caring for palliative patients in pain, nausea or with a syringe driver. Areas such as dealing with symptoms such as fatigue or patients experiencing sleep changes are areas where the nurses consider they are not as effective. In addition DN’s were asked to list further topics where they would have liked extra training. The following topics for end stages of diseases were suggested:

• Heart failure. • Dementia • Renal cancers, • Lymphomas, • Spirituality • COPD

District nurses recommended that there should be:

Suggested Improvement Updates on medication including syringe driver management 10.2..8/37

- 187 -

Suggested Improvement Regular updates of all symptom management issues including 10.2..8/38 pain control. Suggested Improvement Training on breaking bad news and after death support 10.2..8/39 Suggested Improvement Fatigue, disease progression 10.2..8/40 Suggested Improvement Support to develop skills in breaking bad news and offering 10.2..8/41 after death support

Challenges in providing in palliative care

The majority of the DN’s highlighted the insufficient availability and access of resources for the provision of quality palliative care over a 24 hour period as one of the main barriers to effective home care. Others included the current funding arrangements, discharges from secondary care, communication and coordination between health care professionals, patients and their families, support and information for the family or carer and the lack of available and appropriate training and education. District nurses also felt that the late recognition for the need of palliative care in patients with a non cancer diagnosis delayed access to services for them and their family carers.

Other issues of challenges raised by District Nurses include:

Issue 10.2.8/66 Lack of discussion re what patient wants to happen (e.g. die at home, die at Hospice) Issue 10.2.8/67 Fear of addressing such issues Issue 10.2.8/68 Another barrier I have observed is the adequate preparation of the patient and family for a terminal phase in their disease, we are often met with patients who have been given false hope of delayed chemo, while they 'get stronger', when it Issue 10.2.8/69 GPs not always prepared to do preemptive prescribing adequately Issue 10.2.8/70 As a DN, I often have to work late and give a lot of myself to maintain a good level of support in the last days of life, covering a large geography and busy caseload, often more than one person needing this level of support Issue 10.2.8/71 Seriously affect our own health and has led to great stress on the team at peak times. Issue 10.2.8/72 Few clinicians have the time to intensely manage this cohort Issue 10.2.8/73 Personal lack of knowledge of available services/benefits Issue 10.2.8/74 At the GSF meetings the GP who knows the patient being discussed is often not present Issue 10.2.8/75 If the ambulance are called there is not always uptodate information regarding PPC Issue 10.2.8/76 Often little support offered for the patient on the first night of discharge Issue 10.2.8/77 Master qualification required limits applicant for vacancies Issue 10.2.8/78 Difficulty with EOLC patients to get GPs to write drugs up Issue 10.2.8/79 Getting GP to see a patients; “have to drag them there” Issue 10.2.8/80 Inequity regarding whether the patient or preferences are known to the GP, whether the GP “does” EOLC or not. Issue 10.2.8/81 No support for Mental Health patients Issue 10.2.8/82 Families panic in a crisis and when there are no DN’s / Specialist services available Issue 10.2.8/83 Patients deteriorate and can’t get appropriate drugs

- 188 -

Issue 10.2.8/84 DN’s instigate training to deal with lung drains, tracheotomies etc, not proactive from hospital; Issue 10.2.8/85 Drugs are sent home but hospitals will not write prescriptions Issue 10.2.8/86 No Marie Curie available for the first night following discharge from hospital Issue 10.2.8/87 Ambulance called, nothing to state patients wanted to stay at home Issue 10.2.8/88 Little End of Life support Issue 10.2.8/89 Equity of services across the county is questionable Issue 10.2.8/90 Families think that Macmillan nurses pass messages on

Issue 10.2.8/91 Very confusing lots of professionals going in makes confusion between agencies Issue 10.2.8/92 In general families don’t appreciate all the different professionals involved

Other recommendations to overcome the challenges of providing palliative care include:

Suggested Improvement Staff to meet patients in preterminal phase, patients will know 10.2..8/42 staff and who will be involved Suggested Improvement Raise the profile of what the community can do 10.2..8/43 Suggested Improvement Needs more joined up process 10.2..8/44 Suggested Improvement In general families don’t appreciate all the different 10.2..8/45 professionals involved; would prefer just one key worker Suggested Improvement Education for ward staff regarding what the DN role is and 10.2..8/46 their responsibilities Suggested Improvement More DN’s 10.2..8/47 Suggested Improvement GP’s to preemptively prescribe 10.2..8/48 Suggested Improvement GP’s, handing over and writing up prescriptions 10.2..8/49 Suggested Improvement GP drug charts needed 10.2..8/50 Suggested Improvement Often needs earlier introductions to patients 10.2..8/51 Suggested Improvement Sometimes need more availability of carers to help to support 10.2..8/52 in early unpredictable terminal phase. One named person to liaise with hospital discharges see the Suggested Improvement patient and carers/family before discharge liaise with 10.2..8/53 required services following an assessment of needs Suggested Improvement Contact family regularly. 10.2..8/54 Suggested Improvement Keep all documentation relevant and up to date and in the 10.2..8/55 home. Suggested Improvement List of contact numbers for families/carers for all out of hour 10.2..8/56 needs/concerns Suggested Improvement Allowing us to use Marie Curie service more often than 2 10.2..8/57 nights before going to continuing care.

- 189 -

Suggested Improvement Central point to obtain emergency stock of medication for 10.2..8/58 palliative care Suggested Improvement Macmillan nurses are restricted in their numbers /available 10.2..8/59 time and have to use referral criteria Suggested Improvement 10.2..8/60 More education and support for staff providing care Suggested Improvement Perhaps there needs to be a 'death plan' rather like a 'birth 10.2..8/61 plan' to follow, although this might be particularly difficult to address. Suggested Improvement Investment in Macmillan team to enable them to cope with 10.2..8/62 caseloads and therefore able to support DN teams more effectively Suggested Improvement More hospice carers to support patients where social care is 10.2..8/63 difficult to access. Local services, i.e. Hospice, outreach clinics to reduce distance that people have to travel Suggested Improvement 10.2..8/64 Hospice at Home Suggested Improvement 10.2..8/65 Improved documentation available to all members of the MDT Suggested Improvement Hospice at Home carers increase in numbers. More Marie 10.2..8/66 Curie staff. Plenty of time! Suggested Improvement I would like to attend a training session or basic palliative care 10.2..8/67 course. I often find myself calling other members of the team/other agencies for assistance/reassurance/advice. I would like to feel more confident. Suggested Improvement Communication with Macmillan nurses could be improved. 10.2..8/68

Suggested Improvement Fast access to hospital bed and mattresses and hoists. 10.2..8/69

Suggested Improvement Patient's leaflet what to do after death. 10.2..8/70 Suggested Improvement More time to spend with patient and family. Leaflet what to 10.2..8/71 do after death. Many patients die at night. Support telephone numbers 'chat line'. Suggested Improvement Allowing us to use Marie Curie service more often than 2 10.2..8/72 nights before going to continuing care Suggested Improvement Central point to obtain emergency stock of medication for 10.2..8/73 palliative care Suggested Improvement More education and support for staff providing care 10.2..8/74 Suggested Improvement Perhaps there needs to be a 'death plan' rather like a 'birth 10.2..8/75 plan' to follow Suggested Improvement Improved documentation available to all members of the MDT 10.2..8/76 Suggested Improvement I would like to attend a training session or basic palliative care 10.2..8/77 course.

- 190 -

Suggested Improvement Fast access to hospital bed and mattresses and hoists 10.2..8/78 Suggested Improvement Night sitting service at short notice 10.2..8/79 Suggested Improvement Implementation of LCP 10.2..8/80 Suggested Improvement Being able to access equipment from CES as per the contract 10.2..8/81 not 8 days later as they don't have a van and by this time patient has died Suggested Improvement 10.2..8/82 Night sitting service at short notice.

- 191 -

10.2.10 The Community Equipment Store

The Community Equipment Service (CES) is an integrated Health and Social Care service managed by Suffolk Community Healthcare. It provides and is responsible for an equipment service for the whole of NHS Suffolk area and operates out of three depots at Ipswich, Bury and Ellough (outside Beccles) which service these catchment areas. The CES provides a complete service (delivery, installation and collection) for patients/clients across the county including palliative care patients. The service operates Monday to Friday 9 5 excluding week ends and bank holidays and there are 13 trucks in the fleet and thirty six members of staff. They have a seven day window for delivery. In 2008 9 approximately 92,000 pieces of equipment were delivered across Suffolk.

Information regarding the CES in Suffolk was obtained using the following methodologies:

A combined interview with:

• Independent Living Manager for ACS • Manager of Stores, CES, SCH

There isn’t an overall integrated budget for the purposes of commissioning; each provider holds their own budget which is linked to one of the stores/depots. Provision of equipment for the customer/patient/client is free. There is no specific funding for this group of patients and their family carers although around 5 years ago additional funding was made available: this was put into enabling faster equipment provision for this group of patients by providing 2 staff and a vehicle.

The service is linked in with the National Association of Equipment Providers as well as with the hospitals and those in adjacent counties. In the county, the service reports to the Operational Group. There is also an Equipment Review Group which is overseen by the Management Board and is made up of finance and stakeholders. CES overseen by ICES Board – multi stakeholder and partners agencies board responsible for setting direction of CES, assurance of quality of service, signing off protocols and policies specific to CES, approval of revision to core catalogue of core stock items. The equipment review group – membership consists of clinicians and CES staff, the purpose is to identify any difficulties with the day to day operational running of CES, recommend changes to the system, ensure any MHRA alerts are shared and action taken is identified. It is chaired by a clinician and makes recommendations to the CES operational group. The CES IT system provides the logistical planning function, holds the database of all equipment on loan and in stores. All cleaning and refurbishment of returned stock completed to MHRA standards, a regime that is approved by Infection Control. 3rd party contracts in place for maintenance of electrical equipment, such as hoists and beds

Services for palliative and end of life patients.

Referrals to the service are received from those health and social care professionals/staff that are qualified to assess for a piece of equipment. All Health and social care providers referrers use the same online ordering system which was reported to be effective in those cases where if the orders are standard/routine and there are no ‘road blocks’ i.e. around funding.

Patients/clients requiring the CES are identified and access the service in a number of different ways: through the hospital safe discharge process; at home via Local Health Community teams and the GP; they also contact Customer Services directly but they all need to have been assessed by a clinician.

- 192 -

The capacity for palliative and end of life patients is (patients requiring bed and associated equipment) not a 24 hours service (do not work weekends). Palliative would be treated as urgent. Approximately 8 beds available per day in the Ipswich and Bury areas.

The equipment ordering processes was noted to be via the CES web based ordering system once clinicians have carried out the requisite assessment. The system doesn’t provide the delivery time for a piece of equipment straight away and although there isn’t an individual response when orders are made, on the whole it works well and clinicians can phone up if the order is urgent. Service staff can track the order to the source directly to respond to telephone queries. In future HCP’s will also be able to illustrate to patients the equipment being ordering on their behalf.

The service responds flexibly and it was reported that there is a great deal of goodwill and commitment within the service and in order to meet requirements, will go out again if necessary to deliver if it is urgent and if possible. However, the demand on the service is great and the capacity available is not always sufficient to meet it. This was reported to be an issue when discharging patients home, particularly palliative and EOLC patients. If it is not communicated that the patient is palliative / urgent then the delivery is not prioritised as such; it was noted that the role of the service is not and shouldn’t be to assess need and make decisions and that the prioritisation of patient need and subsequent urgency is the responsibility of the clinicians. In cases whereby two requests are received, i.e. one for a bed, one for a commode, the response is on a first come first served basis unless there is clinical prioritisation indicated in which case they will treat these as priority. Due to the often complex requirements for palliative and EOLC patients the service is currently exploring alternative ways to contract bed and mattress procurement, delivery and assembly. In the North West they are developing a regional service for urgent hospital discharge patients with a discharge package agreed by clinicians; in this way the EOL equipment provision will be removed from the standard service.

It was reported during the interviews that there have been issues for some time relating to the urgent deliveries. There is a palliative care delivery service which runs every day consisting of one van with two people and there are difficulties regarding the definition of palliative.

The demand for urgent deliveries is increasing and these usually require two personnel to carry out the request as often beds are required. SCH have supplied additional vans to meet the increased demand but these were withdrawn at the end of May 2010 which has had a noted impact on ability to meet the demand for the service. Referrals for specific pieces of equipment may be questioned following the assessment of need, for example whether a hospital bed is required or whether the bed at home could be raised. It was reported that there is a need to balance the assessment of the clinicians with the health & safety and risk and the patient’s choice and attempting to achieve an appropriate balance can be difficult.

One of the main issues highlighted is the ability of the service to deliver the next day; the service in the main are able to deliver within 34 days and the current service level agreement states deliveries within seven days.

For palliative and end of life patients the collection of equipment was reported to be equally important, particularly when the patient has died. Collections are a challenge for the service due to capacity and when the equipment is returned it requires cleaning and inspection prior to utilisation. This can lead to a shortage of beds.

Collection and Recycling: from an ethical point of view the service could potentially undertake to recycle the equipment in current use however from a service perspective the additional costs outweigh

- 193 -

the benefits of purchasing new equipment more frequently. In some areas equipment amnesties are being organised with the Red Cross where the public can bring any equipment to a central point.

There are satellite stores and sites located around the county containing basic equipment which clinicians are able to utilise. Local hospitals and hospices also have these stores and equipment includes bath boards, commodes, toilet seats etc. This solution relieves pressure from the delivery teams and although there are issues relating to the administration and tracking but from patient service perspective this is beneficial

During OOHs there is an arrangement in place for service cover for emergency repairs to equipment; in cases when equipment is unable to be repaired an alternative is until the repair can be carried out. The service will be notified.

Please note that issues and challenges highlighted by staff may be individual perceptions rather than an organisational view or policy.

The following issues were highlighted in relation to service provision:

Issue Number The capacity of the service is not sufficient to meet the demand. 10.2.10/1 Issue Number There are some issues around administration and tracking in relation 10.2.10/2 to the satellite stores.

Issue Number There have been difficulties for some time around urgent deliveries 10.2.10/3 Issue Number There are difficulties in relation to the definition of palliative/urgent 10.2.10/4 and staff have to take the clinician’s word

Issue Number It is not always marked in the document that patient is palliative and 10.2.10/5 delivery urgent

Issue Number The service constantly has to reprioritise deliveries and the logistics 10.2.10/6 can be difficult

Issue Number There are issues around getting people home which relate to capacity: 10.2.10/7 extra vans put in to meet the increased demand were withdrawn at end of May 2010 Issue Number The demand for urgent deliveries is increasing and these are usually 2 10.2.10/8 man deliveries as often beds are required

Issue Number Prioritisation has to come from the clinicians as the service cannot and 10.2.10/9 shouldn’t assess need and make decisions around priority.

Issue Number Service can only treat orders on first come first served basis unless 10.2.10/10 there is some kind of clinical prioritisation indicated.

Issue Number From clinician’s perspective all deliveries are urgent. 10.2.10/11 Issue Number The ability of the service to provide next day delivery 10.2.10/12 Issue Number Assessment of need for certain equipment such as hospital bed can 10.2.10/13 be questionable

- 194 -

Issue Number Balancing assessment of clinicians around needs of patient with 10.2.10/14 health & safety and risk and patient choice

Issue Number Hospital beds are 2 man delivery and assembly which puts pressure 10.2.10/15 on capacity. Issue Number As demand has increased, more equipment is going out and more is 10.2.10/16 coming back requiring cleaning and inspecting but the resources have remained the same. Issue Number Collection of equipment is just as important as delivery for patient’s 10.2.10/17 family but collections are a challenge for the service because of capacity. Issue Number Different stakeholders have different priorities: patient’s family will 10.2.10/18 want equipment collected quickly following the patient’s death but this is not a priority for other stakeholders Issue Number There are challenges around the logistics of storing returned beds and 10.2.10/19 also they have to order new beds to meet demand

Issue Number Equipment has to be cleaned and inspected before it can go out again 10.2.10/20 and there are issues around capacity.

The following suggested improvements were made in relation to service provision:

Suggested improvements Ability within the system to prioritise Palliative and EOLC 10.2.10/1 patients Suggested improvements Increase capacity to meet the needs of the service 10.2.10./2 Suggested improvements There is a need to balance the assessment of the clinicians 10.2.10./3 with the health & safety and risk and the patient’s choice Suggested improvements Development of a service specification to include capacity 10.2.10./4 to deliver service for urgent deliveries, enable discharge, support wishes of EOL patients and meet Health and Safety requirements for a safe discharge Suggested improvements Recommendation: Development of service specification 10.2.10./5 and set of criteria for palliative & EOL patients.

- 195 -

10.2.11 Total Care Team ( TCT)

Information regarding the involvement of the T.C.T (Woodbridge based) and End of Life Care was collected by using the focus group methodology: 3 members of the team were present at the interview.

Total Care is a new integrated health and social care model that offers case management for people with long term conditions who have complex health and social care needs who are at highest risk of being admitted to hospital. The present service design is for East Suffolk only and supersedes the community matron service.

The objectives of the service are:

• To increase patient’s quality of life, independence and ability to selfmanage. • To support their family carers. • To decrease the frequency of medical and social crises. • To ensure clear coordination between all services involved. • To improve integration in service provision.

With Expected Outcomes of:

• Improved quality of life for patients and family carers. • Decrease in o Hospital admissions and length of stay. o Admissions to nursing or residential homes. o Acute exacerbations of longterm condition. o Social needs ‘crises’. • Increase in o Selfmanagement and independence o Coordination of services.

Referral

The service is for all adults (18+) registered with East Suffolk practices with a referral criterion of people who meet three or more of the following:

• people with three or more long term conditions • people who have experienced 3 or more hospitalisations in the past 6 months (especially admissions with the same diagnosis) • people who have attended accident and emergency departments three or more times in the past six months (especially for the same reasons) • people who have had two or more nonenvironmental falls within the past two months • people who have suffered a bereavement within the past year and are at risk of medical/social decline • people who have been in hospital for more than four weeks in the past year • people who have 25 hours or more personal home care per week • people who fall into the top 3 per cent of frequent users of GP home visits • people taking five or more medications.

The referral route is mainly from general practice however the team provides open access from other professionals. The service is provided on Monday to Friday, 9am – 5pm. The team is a “new service” with weekly meetings to discuss the cases and who will take the lead for the patient. The response - 196 -

time to see a new referral is within 48 hours. The team has good links with District Nurses and the LCHT. It was reported that obtaining carer workers in rural villages is very difficult due to availability of carer workers and no payment offered for travelling expenses.

Palliative and End of Life

Members of the team stated that they had not had much experience with palliative or end of life care and would like to have a clear pathway to clarify explicitly the role of the TCT. The focus of much of their work is admission prevention by offering and supporting choice for patient ad families. This may include assessing and coordination for domiciliary care, referring to the hospice service and/or sign posting to other services.

Case Study

Generic worker has visited a palliative care patient on a daily occurrence. The relationship with the patient and family developed. This experience has led to the generic worker identifying a need for further training ad education to support family and carers on the frontline “Knowing what to say”

During the focus group the team highlighted the issues which have been themed as follows:

Psychological support

Issue 10.2.11/1 Bereavement support is limited Some families do not wish to be with a dying relation – appears to be a Issue 10.2.11/2 need for psychological support

Care packages

Issue 10.2.11/3 Domiciliary care is a big issue. There is no availability of carers, particularly in rural areas. Issue 10.2.11/4

Issue 10.2.11/5 Enabling service is offered 6/52 and not clear if suitable for end of life. Domiciliary agencies do not always fund travel expenses therefore there Issue 10.2.11/6 is not the incentive for carers

Coordination

Issue 10.2.11/7 Does not appear a key person/worker identified for end of life patients – meetings taking place regularly – are not always aware these are taking place. Issue 10.2.11/8 Cancer is covered well, other diseases not aware Issue 10.2.11/9 Lack of rapid assessment for patients i.e. continence assessments Issue 10.2.11/10 Other conditions increasing maybe higher than cancer Issue 10.2.11/11 Families are unaware of how to access the Team Issue 10.2.11/12 Lack of support for very elderly patients who rapidly deteriorate Issue 10.2.11/13 Present teams are “extremely stretched”

Equipment - 197 -

Issue 10.2.11/14 Team is not sure how available is specialised equipment to be accessed quickly e.g. oxygen and specialised nurses.

Other information

Issue 10.2.11/15 Other conditions demand increasing maybe higher than cancer Issue 10.2.11/16 There is not always a hospice bed available

The following recommendations were suggested:

Suggested Improvement Training and education for frontline staff to support 10.2.11/1 families/carers – “Knowing what to say”. Suggested Improvement Develop a support system for families 10.2.11/2 Suggested Improvement Identification of key worker 10.2.11/3 Suggested Improvement Team would like a clear pathway where clarity of roles is 10.2.11/4 explicit. Suggested Improvement 10.2.11/5 Increase the specialist skills in community Suggested Improvement Develop a support scheme for the elderly alone in the 10.2.11/6 community. Suggested Improvement After death support and information for families 10.2.11/7 Suggested Improvement More specialist skills required to offer end of life 10.2.11/8 Suggested Improvement More standardised information for patients carers and staff 10.2.11/9

- 198 -

10.2.12 Rapid Response Teams

Rapid Response Team

The information regarding the involvement of the Rapid Response Team (RRT) was collected by interviewing 2 members of the team, distribution of the community nurse questionnaire and a telephone interview with the service lead.

The team works from a base in Ipswich Hospital and proves a responsive admission avoidance and timely discharge service. The service is available for all adult patients registered with a GP within East Suffolk Community Healthcare boundary. The service is commissioned by NHS Suffolk.

Membership of the team includes:

• 1 WTE Band 7 Registered Nurse • 2.83 WTE Band 6 Registered Nurse • 11.06 WTE Band 5 Registered Nurse • 1 WTE Band 3 Generic Worker • 5.14 Band 2 HCA

Referrals

Patients are referred directly to the team via a 24 hour mobile telephone number for health professionals. The telephone is held by the nurse on duty.

Table 1: Performance activity Contacts Apr-10 May-10 Jun-10 Jul-10 Aug-10 Referrals 367 355 363 349 366 East Team Face to face 1469 1416 1325 1280 1254 Telephone 83 53 49 68 34

Palliative care support

Members of the RRT stated that they are rarely involved in palliative or end of life care, except occasionally in OOHs, the team may be asked to support the commencement of a syringe driver, a member of the team stated this causes difficulty due to the infrequency of being involved in this procedure not all the team members have the required skills

Case study

A patient who lived in Mid Suffolk was referred to the team via the service .The visiting nurse found on assessing the patient that she/he was in a lot of pain. The patient’s daughter was a nurse. The patient required the commencement of a syringe driver however in this incidence the GP was not competent to prescribe and the RRT nurse was inexperience to support the setting up of the treatment The Hospice at Home team were contacted, they advised and supported the professionals and the patient and family

- 199 -

An exception to supporting end of life patients are those who have been receiving blood transfusions under the care of the team and very occasionally patients in nursing homes who require subcutaneous fluids. For community referrals, clinical responsibility remains with the patients GP.

The following issues were raised in relation to the Rapid Response Team:

Education

Issue 10.2.12/1 Due to lack of experience, the team (RRT) are unable to set the syringe driver up. Issue 10.2.12/2 Unclear whether Intermediate Care Team working in A & E have involvement with EOLC patients Issue 10.2.12/3 GP unable to set up SDR

Access

Issue 10.2.12/4 Inequitable service across the West of the county Issue 10.2.12/5 Lack of clarity of role in end of life for the team

Care packages

Issue 10.2.12/6 Increased number of patients require support with turning at night Issue 10.2.12/7 Lack of carer resource Issue 10.2.12/8 MCC do not do every night

Information

Issue 10.2.12/9 “Not clear of everyone’s role”

The following recommendations were suggested in relation to the Rapid Response Team:

Suggested Increase the availability of emergency carers to support the rapid changes Improvement of patients condition 10.2.12/1

Rapid Response Admission Prevention Team

The information regarding the involvement of the Rapid Response Admission Prevention Team was collected by telephone interviewing the nursing service lead and the senior practitioner.

In the West of the county the new Rapid Response Admission Prevention (RRAP) team have purely an admission prevention function and are due to become a 24 hour service in November 2010. Presently the nursing part of the service is available 7 days a week between 8am and 10pm. Intensive packages of nursing interventions, therapy and care are provided for up to 14 days to prevent inappropriate admission to hospital and to facilitate a quick return to an optimum level of independence. Nurses visits up to 4 times per day depending on capacity and location.

- 200 -

There is a multi disciplinary approach to the remit of the team offering a range of services from Social Care and Health with joint care plans agreed with patient and/or carer and an agreed review date is set within 14 day period. The nursing team including the evening nursing service consists of:

• WTE Band 6 RN • WTE Band 5 RN • WTE Band 2 HCA

The Social work team consists of:

• 1 Full time Senior Practitioner • 1 part time Social Worker • 1 full time Community Care Practitioner • 1 part time Community Care Practitioner • 1 full time administrator

Hours of service of the social work team is 8.30 – 5.30 Monday – Friday no cover at weekends at present.

Referrals

The Service is available to adults aged 18 years and above who experience a shortterm crisis, this can come about through a temporary deterioration in their health or functional ability, or their family carer becoming ill or temporarily incapacitated. Referral is via a single point of access for locality 1, Sudbury and surrounding areas and locality 2 Bury, Newmarket, Haverhill and surrounding areas. Referral is made by either by phone or fax. The Service can be accessed by any Healthcare professional within the community who has seen the patient within the previous twentyfour hours and clinicians within A&E and Emergency Assessment Unit The referral is triaged at the point of contact and a response time is agreed with the referrer. If the referral is deemed inappropriate for this service the referrer is signposted to an appropriate alternative service. The team aims to visit within 24 hours and triage who needs to be seen immediately however a member of staff stated this cannot always be timely is often to late for end of life patients. The person referred to the Service must meet the following eligibility criteria: • They have been assessed by a Health or Social Care professional within the previous 24 hours • They have given informed consent to accept the service • They are adult, resident in West Suffolk and/or registered with a GP in the west of Suffolk. • They have an acute physical health or care episode requiring enhanced care which cannot be delivered by or in addition to mainstream services, or have a carer in crisis • They are in a position to benefit from a short period of rehabilitation • They would otherwise require admission to hospital

A fax is sent to the patients GP to inform that the person is on RRAP service and the intervention being provided and a discharge summary follows.

- 201 -

Table 2: Performance activity Measure Apr10 May10 Jun10 Jul10 Aug10 Total number of 54 81 72 86 56 Referrals RRT West

It was reported that nurses are not always listened to by medical staff. An example was given where a Doctor refused to administer appropriate pain relief which resulted in ineffective relief for the patient who had to be admitted into hospital.

The following issues were raised in relation to the RRAPS Team :

Issue 10.2.12/8 It is difficulty to obtain changes of medication for patients Issue 10.2.12/9 Medical Staff do not listen to the nurses Issue 10.2.12/10 The team often are not able to visit the patient timely Issue 10.2.12/11 It is not helpful for the family or patient where the responsibility of their care moves from one team where it is set up, into another team in the community to be reviewed. Issue 10.2.12/12 The lack of continuity of social worker/care worker responsible for moving the patients care from the hospital environment into the community can cause problems for the patient and families in terms of knowing who to contact and having to deal with different workers Issue 10.2.12/13 The referral process needs clarity for staff and is at present a complicated process. Issue 10.2.12/14 Capacity for staff to carry out work can be an issue Issue 10.2.12/15 It is difficult and causes delays in work practice having the nurses and social workers based in separate environments. Issue 10.2.12/16 Therapists have other workloads and may not be able to offer a service at times; they are not able to priorities work for the team at present and sit very separately from the team. Issue 10.2.12/17 Logistically there are delays caused because there is no night sitting service available to refer patients to.

The following recommendations were suggested in relation to the RRAPS Team:

Suggested Improvement Reflect the East model of Hospice at home in the West 10.2.12/2 Move the two sections of the teams physically to be based in Suggested Improvement the same office. 10.2.12/3

Suggested Improvement Develop one contact number only over the whole 24/7 10.2.12/4 Suggested Improvement Dedicated therapists should be based in the team 10.2.12/5 Suggested Improvement Increase the number of social workers available to the team. 10.2.12/6 Suggested Improvement Providing a night sitting service would fill a current gap in 10.2.12/7 provision and prevent readmission to hospital

- 202 -

10.3 Social Care

10.3.1 Adult and Community Services

Structure of Adult and Community Services (ACS) in Suffolk County Council

Information regarding the involvement of adult and community services in palliative and end of life care patients within Suffolk was collected in the areas of Customer First, Area Teams, Home First, Out of Hours service and ACS Care Homes.

The following methodologies were used:

• Questionnaires were sent out to staff in each Area Team • Questionnaires were sent out to staff in Customer First • Questionnaires were sent out to staff in Home First Teams • Questionnaires were sent out to the 16 ACS Care Homes • Interviews with Area Team managers • Interview with Customer First Manager • Interview with Continuing Health Care Lead Manager • Interview with Out of Hours Manager • Meeting with Home First Team managers • Attendance at 2 Partnership Boards • Process mapping: • Obtaining a community care assessment through Customer First

The following section outlines combined findings from the above methodologies and information regarding the structure of the service. The investigation focused on: their roles, assessment and documentation of care, communication with different professionals, access to palliative care advice and services, organising packages of care, organising care home placements, caring for BME clients.

In some areas of Suffolk, there are new initiatives providing joint services across social and health care, where a mix of professionals are working together to provide health and social care services and support (Total Care Teams). It is pertinent to say at this stage in time, that there are significant changes within the structures of provision in health and social care. Therefore this report is providing information about structures in place at the point of the Phase 1 process, but which may be subject to change and development through the life time of the programme.

Results from the Care Home Managers are included in the Care Home section 10.5 of this report with the full analysis in the annexe.

Service Structure

The Chief Executive is the head of staff employed by Suffolk County Council and acts as the focal point for key partners and organisations working within Suffolk and outside of the county. The Chief Executive is the Principal Policy Advisor to councilors and leads the Corporate Management Board. She manages the five directors of the Service Offices and the Director of Public Health. She is also a director of the Customer Service Direct (CSD) partnership, and Clerk to the Lieutenancy. Service Offices are responsible for commissioning 'frontline' services including services for palliative and end of life care patients. Adult and Community Services (ACS) are one of the Service Offices who provide services for palliative and end of life care patients.

- 203 -

The Vision for Adult and Community Services is: "Adult and Community Services will ensure people of all ages and abilities, who live in Suffolk, have opportunities to access activities either leisure, learning or work that assist them to develop and sustain their economic, health and social well being, helping them to remain independent, exercise choice and their right to dignity in a safe environment." This vision includes the area of palliative and end of life care patients in relation to their social care needs relating to choices and services available to them at this stage of their life.

ACS Roles and responsibilities

The Adult and Communities Service Office (ACS) works in partnership with health services, local councils, the independent, voluntary and private sectors and our colleagues in 'frontline' services and other service offices. Services commissioned or provided by ACS include access to the following relevant care services as below –

• Accommodation for vulnerable people • Adult learning • customer rights • disabilities • employment and economic well being • family carer support • residential homes services • safeguarding of vulnerable adults • specialist support for people at home

In many of these areas of service, palliative and end of life care for patients may need to be considered and may include specific areas of support, advice and information for instance in the service area of Family Carer Support and Older Peoples Support Service.

Fair access to care services (FACS)

In Suffolk for adults of at least 18 years old, ACS may be able to offer care and support, if the person has a care need that significantly affects their ability to live a normal life. ACS can also help if a person is caring for someone with care needs such as palliative and end of life stage patients. However, not everyone who asks ACS for help can be given a service because ACS must make sure that they can help those in greatest need. ACS will only be able to help those with issues that are eligible needs. An eligible need is if an individual needs help in a key area of their life such as:

• keeping safe • maintaining independence; • personal care • Staying physically and mentally well.

To ensure ACS are able to assist people with the greatest needs, including palliative and end of life care patients, it is important to determine what the consequences of not meeting the need would have on the person’s life and how significant this could be.

- 204 -

Eligibility Criteria

Eligibility for services is determined by the degree of need experienced by an individual and how it affects their everyday life. Needs and their effect may be categorized within one of four bands:

• critical • substantial • moderate • low

In Suffolk, ACS provides services for needs that fall within the Critical or Substantial bands. If however needs fall within the Moderate and Low bands the individual will be offered information, advice and guidance.

In relation to palliative and end of life care, if this stage of life is identified in the needs assessment, some services may have a fast tracking process to avoid delay in services, for instance, in Customer First and Home First, and may not be affected or delayed by the fair access to care process.

Referral and Assessment in ACS

Referrals for a community care assessment and palliative and end of life care services can be made by any health and social care professionals, the patient or their family carer.

In Suffolk all referrals are made via a single referral point called Customer First part of Customer Service Direct.

Customer Service Direct (CSD)

CSD is a partnership between Suffolk County Council, Mid Suffolk District Council and BT, and brings together all council services in one place. Customer First is a joint initiative between Adult and Community Services (ACS) and Customer Service Direct (CSD) which began in October 2007. In Customer First, social work practitioners work alongside the call answering teams who provide information and advice.

If a patient or relative makes a referral, an initial telephone assessment is carried out by a practitioner at Customer First, and the patient is screened against Fair Access to Care Service (FACS) eligibility criteria. The team signpost callers to local community activities or services, and may carry out initial assessments of community care needs and of eligibility for council funding where relevant. Where required, practitioners can initiate services such as Home First, community meals, day services, some home care packages and community equipment. The service aims to assess and support end of life care patients promptly if the situation is assessed as being urgent, (see process mapping).

- 205 -

Process Map 1

- 206 -

The service operates between 08:0018:00 Monday – Friday. When the call is received out of these hours of business, the call is diverted to the Out of Hours Service (see section on Out of Hours Service). After the initial referral, in some circumstances Customer First will continue with the assessment process and implementation of service provision. However, if the case is likely to be more complex and requiring a full and comprehensive assessment, or if the patient/customer already has an allocated worker in an area team, they will then be referred to that worker through the electronic database Care first 6. The worker will then review the situation and take forward any action required.

Area Teams

In Suffolk, ACS have 7 area teams who work across the four areas of north, south, east and west, and who provide community care assessments, therapeutic social care work, support, advice, sign posting to services and setting up packages of care. The service operates between 08.50am–17.20 Monday Friday. Each team is made up of a combination of manager, senior practitioner, social workers, community care practitioners, review coordinator and occupational therapists. The area team managers report to 4 locality managers in the north, east, west and south of the county of Suffolk.

In each area team there will be a manager or senior practitioner who is on duty for the day and responds to all activities received through the database Care First6 from Customer First. They are responsible for prioritising and allocating the work to a team member. In the case of end of life patients, this referral is prioritised, allocated and responded to as promptly as possible.

Each area team has a weekly decision making panel to quality assure decisions regarding the cost of packages of care and care home placements. Where urgent decisions are required between meetings, the area team manager can be contacted to discuss the issue and make any decisions necessary. Continuing Health Care funding applications are sent to the lead manager for processing through a separate panel led by Health.

Role of the practitioner in Area Teams and Customer First

The main duties of practitioners involve a wide range which includes the following:

• receiving and responding to calls through our single access point of referral • completing initial and complex community care assessments and reviews, • transferring care from Home First to external providers, • discussing finance and offering advise and support, • discussing respite, social activities, residential care, nursing, VSH, • Arranging services that meet assessed needs having met the eligibility criteria. • assessing for equipment, • addressing issues of safeguarding • Reviewing packages in home or residential care settings. • identifying family carers, offering assessment, advice, support and signposting

Home First

Home First is an ACS inhouse provision of domiciliary care enabling/rehabilitation service that provides a carer support worker to go into the home to offer personal care such as meal preparation, medication, personal care etc. The service is free to all customers who meet the assessment requirements. The philosophy of the Home First Service is an enabling service in the first instance, encouraging customers back in to independence, often after a period of hospitalisation or illness. It is a service that may last up to 6 weeks but generally is less than this. - 207 -

Role of the Home First Practitioner in Home First

Practitioners in Home First who responded to a questionnaire reported that their duties covered a broad range of care provision in the home including the following:

• personal care • medication • dressings • meal prep • continence management

Referrals to Home First are through Customer First who work closely with the Home First Team and where provision is required as urgent for end of life care patients, the process is given priority. The Home First service is made up of teams of care workers based across the county. Each team has a team leader and team manager in each locality, who report to the Overall Home First Manager. The service links very closely with Customer First and the area teams.

In the case of palliative and end of life stage patients, a service is often provided by Home First initially. Some palliative and end of life care may only be required for a few days, However if care is required beyond the 6 week period, it will be reviewed and either continued by Home First or referred on to be provided by an agency.

Out of Hours Service

There is a separately provided service for Out of hours/ emergency calls, where a social care team are available to provide advise, support and social assessment in emergency situations. Access is via the same number for Customer First and operates from Mon – Sunday 5.30pm – 7am. There is a large team of staff in the Out of Hours Service, which includes services for child care, MH and adult service area social workers. The team receive referrals from Harmoni who are a call centre, and who filter calls requiring social care input or assessment. The on call Social Worker assesses the emergency situation and seeks advice from the Operations Manager as required. This may involve a range of options to meet the assessed need

• arrange support or a service package, • sign post to other professionals and services, • Liaise with Home First to set up domiciliary care in the home short term, • Make a home visit and offer advice and support. • Pick up equipment

The team work closely with all agencies across health, adult and community services, voluntary and private sectors including the general public.

The following is an overview and summary of the information gathered from managers and practitioners in all areas of ACS. Full information received via questionnaires in the Area teams, Customer First and Home First can be found in the annexe.

- 208 -

Communication with other professionals It was reported that there are good links with Home First and Community Nurses, and the telephone is the most used form of contact. Where appropriate, a joint visit is facilitated. Practitioners in Home First have good lines of communication also with GP`s, SW`s, agency staff and their team leaders. In general in ACS, information is passed successfully through the internal database Carefirst6 however information sharing with external agencies such as the GP`s and community nurses and other professionals has to be carried out via telephone or email because the system is not integrated with all agencies, at times this may cause delays.

Some practitioners reported that there could be improvements regarding the sharing of information when patients have first come out of hospital and services are being set up. There is clear evidence that suggests regular contact and support exists with District Nurses and Home First practitioners. It was reported that practitioners would like more contact with occupational therapists. Practitioners felt that the level of information received from the community nursing team arrived when needed and adequately described the customers/patients needs.

In an emergency situation with a palliative or end of life stage patient, most practitioners in Home First reported they will contact the GP or Out of Hours initially, however if it is urgent they will contact the emergency services. In Home First they are able to contact their team leader for support and advice easily, and half of those interviewed said they do this as and when they need the extra support.

Documentation of care

It was reported that information is shared well within teams at Home First and their green card system works efficiently. The Home First practitioners in general feel well supported by their team leader and supervisor. It was identified that the practitioners based in the area teams are at present not aware of any specific documentation for end of life care which includes advance care planning.

Access to services

There were mixed findings around the level of awareness of other support services for palliative and end of life care for patients and their family carers. Practitioners reported that they would like to see more capacity of support by Home First and an ability to maintain the continuity in the care provider at end of life stage. Most practitioners in the area teams reported that they offered and completed family carers assessments and reviews as part of their role but were less well informed about how to access support and advice services for family carers.

Family Carer support

Responders were aware of the services of Suffolk Family Carers but less identified Crossroads Care and the hospices as a provider of support services for family carers specifically. Other responses included Macmillan nurses, Marie Curie and Age Concern as possible providers of support services for family carers.

Practitioners in Home First said they would like more time to spend with patients and the family when it is needed at the end stage of life, and not have their time restricted with the patient. Some staff said they would like to see a team of dedicated palliative care nurses available to support them in the home with their work and with the patient available 24/7.

- 209 -

Training

Across the whole area of services in Home First, ACS area teams, Customer First and the Out of Hours service, the key message in relation to training in end of life and palliative care was that they had received limited training and would benefit from this in future.

Caring for patients from an ethnic minority group

There was a limited response to this area of questioning but from those who did respond the report was that more training in cultural awareness and communicating with patients from Black and Ethnic minority groups at the end of life stage would be of benefit to them.

Main Issues have been grouped as below

Service Issues issue 10.3/15 Better communication across agencies issue 10.3/16 More respect for each others responsibilities issue 10.3/17 More joined up working issue 10.3/18 Barriers are having the resources to provide services at this time 24/7 and that are free. issue 10.3/19 When we are considering the end of a persons life it is often very challenging and emotive to be considering the financial situation of the person. issue 10.3/20 Continuing Health Care at end of life – needs reviewing issue 10.3/21 Delays occur if we cannot find the right type of provision, if there are no beds available in a care home or if an outside agency doesn’t have capacity for the service. issue 10.3/22 Limited budgets, tight criteria to follow, staff shortages. issue 10.3/23 Improved communication across professionals and where different people are supporting the carer and patient. Ideal would be a shared database issue 10.3/24 Improved quality of care at home if Domiciliary services worked towards the Gold Standards Framework – standardisation of the service. issue 10.3/25 Equipment provision can often cause delay in enabling someone to go home from hospital issue 10.3/26 Current staffing issues in relation to capacity of workload. issue 10.3/27 Improved relationships and information sharing across professionals could enable a more joined up service than present issue 10.3/28 Sometimes professionals have different agenda’s and may not always lead to working in a customer focused way. issue 10.3/29 Gp’s do not always consider a person staying at home with care is the best option. issue 10.3/30 It is often not an option to place a customer/patient in a care home during the weekend or out of hours due to the resource being very limited and difficult to access out of hours. The process is one of phoning all known options around the county and is not always a positive experience. At worse the customer/patient has to be sent to hospital but that would be a very last case scenario. issue 10.3/31 only half the responders reported they linked with community nurses issue 10.3/32 Transferring services to an external provider is often difficult as agencies do not always provide the same care as Home First and customers/patients are not happy when care is transferred to another agency from Home First

- 210 -

issue 10.3/33 Packages not always set up straight away issue 10.3/34 Families expectations on the service can be challenging issue 10.3/35 Financial issues in the provision of care and support can cause huge barriers issue 10.3/36 Transferring customers from Home First to an external agency which can be very stressful and emotional when they are receiving palliative and end of life care. issue 10.3/37 communications and religious beliefs can cause issues when caring for BME patients issue 10.3/38 Not getting equipment sorted out quick enough, it causes distress to other family members issue 10.3/39 The amount of care hours in the home allowed for each patient is currently time limited, and this needs not to be restricted when caring for someone in the end of life stage. issue 10.3/40 Communication, cultural beliefs, conflict with the family and contact with families can be barriers to good end of life services in the community. issue 10.3/41 sometimes not enough info is passed on from hospital issue 10.3/42 More resources for staff and care

Access issue 10.3/43 Shared systems across all partners – integrated systems to share information issue 10.3/44 I would like to see free care to the customer when it is for care in the community and in the last few days/weeks of someone’s life. issue 10.3/45 Enabling people to die at home may be limited by issues relating to accessing the funding for Continuing Health Care funding. issue 10.3/46 Key 8 No experience of BME group of patients, so far there has always been family members who will interpret issue 10.3/47 Suffolk does have its hard to reach areas and I have in the past encountered problems getting home care in these areas. issue 10.3/48 Customers expectation on their end of life care can be a barrier in its self i.e. reluctance to accept care and support issue 10.3/49 The customers home and location can at times be in areas that care and support are difficult to find or provide issue 10.3/50 More capacity by Home First issue 10.3/51 Awareness of all agencies involved their roles and what support they offer. issue 10.3/52 Awareness of all agencies involved, their roles and what support they offer and for the customer to be as actively involved in care planning as they would wish to be. issue 10.3/53 Joint working between services/agencies to be closer with giving and sharing information issue 10.3/54 More knowledge of support services and how to refer including closer communication with District nurses and more links working with professionals in the community. issue 10.3/55 Common paper processes issue 10.3/56 Often situation at home gets to crisis before referred to Customer First issue 10.3/57 A customer is more likely to be sent into hospital from a nursing home than if they are living in the community with a carer or alone. Some nursing homes will refer the customer to hospital too readily without trying to keep them on site.

- 211 -

Training and education

issue 10.3/1 Could be improved to encompass new Skills for Care competences, and made mandatory, awareness type training in particular

issue 10.3/2 More training in Continuing Health Care funding for all staff across all sectors issue 10.3/3 Hospice provision may not be accessible if there are misunderstandings about Continuing Health Care funding processes issue 10.3/4 Not aware of any indepth type of training for palliative/end of life or if it is included in induction training. issue 10.3/5 More training with back fill provided so staff can attend otherwise there is no capacity for cover and workload becomes an issue if staffs are taken out for training. issue 10.3/6 Maybe more team meeting type training, short courses etc. issue 10.3/7 More available short courses for staff issue 10.3/8 More training and back fill to accommodate this issue 10.3/9 It would be a great benefit to staff if specific training could be provided issue 10.3/10 Lack of insight/denial of the dying person/the unspoken issue of the pending death of the patient for family carers can be difficult for practitioners to deal with. issue 10.3/11 12 responders felt they would benefit from training in end of life care for patients of Black and minor ethnic background issue 10.3/12 I find it hard to communicate to patients regarding what to say at the end of life stage. issue 10.3/13 Need more training in end of life care issue 10.3/14 Not had recent relevant training

Co-ordination & the End of Life Care Pathway

issue 10.3/87 Much more clarity in where Continuing Health Care sits in the pathway and where responsibilities lie issue 10.3/88 We don’t link as well with the District nurses. issue 10.3/89 Communication could be improved, across orgs and professionals issue 10.3/90 End of life care in the community it is not clear as to who coordinates this issue 10.3/91 A Key worker role, to facilitate and work across agencies – there is often a lack of joined up working with agencies issue 10.3/92 It is not always clear what other support is in place and communication between agencies can be disjointed at times. issue 10.3/93 Home First practitioners felt they did not have sufficient contact with GP`s and OT`s issue 10.3/94 More care workers trained in palliative care issue 10.3/95 Home First have limited communications with specialist palliative care nurses

issue 10.3/96 More joined up working with Adult and Community services and palliative care nurses

- 212 -

issue 10.3/97 Adult and Community Services are unable to refer cases to the Total Care Team (admission prevention Team), this causes delays because the service has to find an appropriate medical professional who can make the referral causing time delays.

Family Carers Support

issue 10.3/64 24/7 support for family carers available across county

issue 10.3/65 Family expectation/misunderstanding of roles and responsibilities of professionals in the service area issue 10.3/66 More nursing support in home to assist family carer with caring of end of life patient in the home issue 10.3/67 Easier access to respite support issue 10.3/68 24/7 support and advice for family carers on end of life care issue 10.3/69 More information, more bereavement services, opportunities to talk and have counselling, advocacy services improved for family carers. issue 10.3/70 24/7 helpline, practical and telephone support available issue 10.3/71 Adult and Community area teams do not often complete carers assessments, most of this support comes through the initial Customer First process.

issue 10.3/72 24/7 support in the home at end of life stage available through direct route

issue 10.3/73 More support for family carers to assist them to keep the patients at home.

issue 10.3/74 Respite opportunities available if the family carer needs a break.

Psychological Support issue 10.3/58 Improve availability of bereavement services issue 10.3/59 Improve availability of counselling to carers issue 10.3/60 More bereavement services and prep for family carers leading up to and after death issue 10.3/61 More services available for family carers and patients – counselling or bereavement support issue 10.3/62 Clarification on services available for family carers and how to signpost issue 10.3/63 More emotive/counselling/bereavement type services

Information

issue 10.3/75 Better shared information across agencies issue 10.3/76 Better promotion and awareness training to all involved in applying for Continuing Health Care Funding, what it is , how is it available and accessed etc issue 10.3/77 Gp’s do not always have the right understanding of what services are available to end of life patients. issue 10.3/78 Shared database, better sharing of info with professionals, too much

- 213 -

breakdown causes delays in service moving from hospital to community etc. issue 10.3/79 Information more available to staff and in an easy accessible capacity issue 10.3/80 Better ways of sharing information are required across all agencies; currently this can be very separate and as a result can cause delays or reduced quality of information hand over. Issue 10.3/81 Improved information sharing and sign posting

Choice & Appropriate Environment and Care issue 10.3/82 Often no choice issue 10.3/83 Choice in the correct provision being available may be limited if applications for Continuing Health Care funding are not being robustly monitored and promoted in acute settings issue 10.3/84 Rural county and sometimes no provision available locally. issue 10.3/85 Sometimes other professionals are not so focused on patients remaining in the home and being cared for there, there is room for improvement here. issue 10.3/86 Not sure if patients all get to make the choice of where to die, room for improvement

Out of Hours issue 10.3/98 24/7 services a must please! issue 10.3/99 Yes please!! Support in home, not just helpline issue 10.3/100 Respite beds can be a major problem during out of hours services and it takes an extensive amount of time for a practitioner to source a bed and in a suitable location. issue 10.3/101 Not all discharges go through the discharge team and if services are not assessed and set up there may be breakdown in care at home, causing readmission within a short time issue 10.3/102 We don’t always get full information from O of Hours issue 10.3/103 Nursing or respite Out of Hours care needs to be improved by 100% especially Dementia Care.

Discharge issue 10.3/104 More joined up working with GP practices issue 10.3/105 Needs better coordination issue 10.3/106 Delays can occur when equipment is needed in the home in order to facilitate the customer leaving hospital. issue 10.3/107 Better shared working across agencies and reduction in documents that require completing issue 10.3/108 Improved planning at discharge stage to ensure the right services are set up, often family are not able to cope. issue 10.3/109 Improvements in the discharge process including holistic assessment and involvement to capture all aspects of going back home, to ensure there are no short falls or lack of support at home. Includes discharge from the hospital or a hospice. issue 10.3/110 Full discharge plans with equipment, aids and support and medication, there are currently inequities of service across the county at present.

- 214 -

Quality of care issue 10.3/111 Raise standards of competences – add to contracts issue 10.3/112 Standardisation through Care Homes signing up to the GSF issue 10.3/113 Quality of care is not an issue but an increase in the amount of it might be! equipment hospital beds may take a while to deliver causing delays in issue 10.3/114 discharge issue 10.3/115 Better cross agency working – would have a knock on effect with quality of care

Other areas issue 10.3/116 Better cross agency working – respecting each other and where each agency fits in and is responsible. issue 10.3/117 I would like to see a night service for end of life care in the home. issue 10.3/118 Creating Champions to take the End of Life agenda forward issue 10.3/119 More opportunities to work across agencies and build relationships with other professionals issue 10.3/120 More capacity and time to spend on each case so not so quick turnover issue 10.3/121 Resources are often a challenge – beds, equipment in the home – sometimes the service can tap into hospital resources if required.

The following suggested improvements were suggested: suggested recommendation Relationships, shared ways of working, acknowledging who 10.3/1 should do what when and at what cost, true integrated and shared ways of working suggested recommendation 10.3/2 Equipment provision needs to become more efficient. suggested recommendation There is room for improvement in the area of information and 10.3/3 data sharing across all professionals suggested recommendation More social workers in the community setting – this may be a 10.3/4 GP practice. suggested recommendation More support pre death and for after death of cared for person 10.3/5 and for family carer suggested recommendation better signposting and more provision of 10.3/6 counselling/bereavement services suggested recommendation More comprehensive and 24/7 type services available for 10.3/7 families and carers . suggested recommendation Shared systems of recording – better way to share information 10.3/8 across organisations – currently not an option electronically. suggested recommendation Training for staff in the EoL stage of the customer could be 10.3/9 improved. suggested recommendation More resources to allow staff time to complete the 10.3/10 assessment task and ongoing provision. suggested recommendation 10.3/11 Resources to backfill staff so that they can attend training suggested recommendation More information for staff to direct family carers to, regarding 10.3/12 end of life and bereavement services suggested recommendation I would like to see ‘lead practitioners’ in each of the area 10.3/13 teams who take the responsibility for the majority of assessments and reviews in the area of Continuing Health

- 215 -

Care funding. suggested recommendation Continuing Health Care at end of life – needs reviewing 10.3/14 suggested recommendation More training in Continuing Health Care for all staff across all 10.3/15 sectors suggested recommendation Much more clarity in where Continuing Health Care funding 10.3/16 sits in the pathway and where responsibilities lie suggested recommendation It would be very beneficial if there was a 24 hour service 10.3/17 available for families at the end of life stage suggested recommendation We could improve psychosocial and counselling type services 10.3/18 as well, there is a lot of disparity and inequity in what is currently available across the county. suggested recommendation Standards of care in domiciliary care agencies could be 10.3/19 improved by using GSF across the board. suggested recommendation Champions in each area team in adult and community 10.3/20 services with an end of life remit would be a way of sharing best practice and influencing staff in the teams about end of life care. suggested recommendation Better information facilities, shared guidance and info 10.3/21 suggested recommendation Improved planning at discharge stage to ensure the right 10.3/22 services are set up, often family are not able to cope. suggested recommendation Nursing or respite Out of Hours care needs to be improved by 10.3/23 100% especially Dementia Care. suggested recommendation I would like to see improvements in the discharge process 10.3/24 including holistic assessment, and involvement to capture all aspects of going back home to ensure there are no short falls or lack of support at home this Includes discharge from the hospital or a hospice. suggested recommendation Full discharge plans with equipment, aids and support and 10.3/25 medication, there are currently inequities of service across the county at present. suggested recommendation More palliative care nurses for care and support to the family, 10.3/26 and the nurses who are very kind to them suggested recommendation On going support from professionals for patient and family 10.3/27 carers suggested recommendation I would like someone to give a talk on looking after patients 10.3/28 and how to talk to them suggested recommendation Allowing enough time for care and it not being restricted 10.3/29 suggested recommendation Having a team set up for palliative care 10.3/30 suggested recommendation More care workers trained in palliative care 10.3/31 suggested recommendation More capacity by Home First 10.3/32 suggested recommendation Not transferring customers to an external agency which can 10.3/33 be very stressful and emotional when they are already receiving palliative care by Home First suggested recommendation Awareness of all agencies involved their roles and what 10.3/34 support they offer.

- 216 -

suggested recommendation 10.3/35 More knowledge of support services and how to refer, suggested recommendation 10.3/36 Free end of life service to the patient at home

ACS Care Homes

Adult and Community Services own and maintain 16 residential care homes. People receiving a service from Adult and Community Services are usually financially assessed but health care needs are delivered free to people by the NHS trusts. This model of care is continually developing, as innovative ways are considered to deliver health and social care services, whilst maintaining a personcentered focus. However people can also stay in other residential care homes in Suffolk, which are run by a variety of organisations as discussed later in the Care Homes Section. Many of these homes offer specialist services, such as dementia care and shortterm care.

The findings from a questionnaire sent out to Care Home Managers in Suffolk are provided in a summary form in section 10.5 Care Homes and in full in the annex.

Hospital Teams

ACS have 2 Hospital social work teams based in West Suffolk Hospital and Ipswich Hospital. The teams are joint funded initiatives and work with health professionals in the hospitals. ACS provides practitioners able to carry out community care assessments and Home First Teams able to set up the in house ACS Home First Service directly. (See Hospital Sections for more information on the Integrated Hospital Teams)

- 217 -

10.4 Community Hospitals

Information regarding the community hospitals within Suffolk PCT was collected using the following methodologies:

• Email Interviews with locality leads • Interviews with modern matrons, ward sisters and Day and Treatment lead • A focus group with Inpatient Lead from a community hospital, inpatient sister and a community team lead

The following section outlines the combined findings from the above methodologies. It is important to note that the information presented is based on the descriptions of individual staff. Positive comments, issues, challenges and suggestions for improvement raised by staff are presented at the end of the section to reflect the views of staff within the community hospitals as a whole. This has been done to maintain anonymity and present the common themes.

There are 5 community hospitals in Suffolk with a varied number of in patient beds as follows:

• 16 Beds – Felixstowe Community Hospital • 20 Beds – Aldeburgh and District Community Hospital • 14 Beds – Newmarket Community Hospital • 28 Beds – Bluebird Lodge. • Walnut Tree reduction of beds to nil as part of the community transformation programme

The community hospitals are currently provided by Suffolk Community healthcare, the provider arm of NHS Suffolk. These are currently under review as part of the community transformation programme where their use and future model is being agreed

All the hospitals operate a 24 hours service for 365 days per year to support the provision of intermediate care beds. Local Healthcare Teams and doctors’ out of hours services support the service out of hours and will utilise via the on call facilities, the specialist teams and voluntary support services, if necessary during the night. Eligibility for intermediate care bed is based on an individual’s assessed health needs. Access for consideration and assessment is non discriminatory; it is not based on age, condition or type if health need diagnosed.

Referral criteria

Patients must meet the following criteria:

a) Over 18 b) Medically suitable i.e. not requiring daily intervention from medical staff and seen by a doctor (or a nurse/therapist with discharge competency) within the last 24 hours prior to proposed admission c) Registered with a Suffolk GP (or Cambridgeshire GP for Newmarket, within SLA) d) Able to be cared for safely and with dignity within the community hospital environment, taking into account facilities, Health and Safety requirements, Deprivation of Liberty Standards e) Not presenting an infection control risk to other patient’s within the community hospital setting f) Requiring support that is best provided in a community hospital setting rather than an acute hospital

- 218 -

g) Requiring support that is best provided in an inpatient setting rather than their own home

Patients will also have at least one of the following needs:

a) An identified rehabilitation need i.e. clearly defined, time bound goals that are achievable for the patient and the setting, bearing in mind that goals can change during rehabilitation b) End of life care where complex planning or symptom management is required c) Active treatment that can be provided in the setting where it is not possible to deliver the treatment in the patient’s home

Patients will be considered on their individual needs. Referral route is via the single point of access.

Medical cover

Bluebird Lodge, Aldeburgh and Felixstowe have medical cover provided by the provider Harmoni; A GP visits the hospital daily between 9 am to 5pm and an elderly medicine consultant visits weekly.

Newmarket patients remain under the care of the elderly medical consultants from West Suffolk Hospital Trust (WSHT); patients who have been admitted by their GP remain under their care. care is provided by Harmoni.

Discharge

At BBL a multidisciplinary meeting is held once a week, the ward has 2 teams. Each team is represented by their staff nurse & a generic worker. The physiotherapist, occupational therapist and social worker represent both teams. Staff reported that although the patients GP is invited, attendance is rare. The GP cover for BBL is only for day to day requirements & does not include discharge planning as their allocated time would not permit this.

The whole team reviews the patient’s progress and plans the discharge and the nursing team liaises with patient and their family carers. The modern matron is ultimately responsible for the discharge plans. Once a decision has been made regarding discharge, any member of the team can make a single point of access referral to the community teams, depending on the need, i.e. therapy or nursing. The referral is triaged and sent to the relevant team.

Complex equipment ordered from CES, such as profiling beds, bed rails, hoists & fixtures/fittings will be undertaken by an Occupational therapist. Simple equipment is ordered by a generic worker. Training is yet to be rolled out to enable nurses to order beds where the need is for pressure relief. The ward nurse is responsible for organising equipment via the CES as larger pieces of equipment requires a risk assessment.

A challenge discussed by the group was if patients cannot manage their own medication this can be an issue. Some pharmacies will provide patients with a dossier box but this could be a limited number. It is often difficult to find someone to support patients with their medication if this does coincide with a visit by a care worker.

The need for a social workers input is usually identified on admission to Bluebird Lodge; after obtaining the patient or their representatives consent, the nurse will make a referral to the social work team. After all the assessments have been completed, i.e., personal care, mobility, kitchen (meals or drinks preparation), the team will analysis how much help the patient requires. The family will also be

- 219 -

consulted in order to determine their level of input and a 48 hour needs assessment may be conducted. The team will ascertain whether the need is for short or longer term and the care package may well be imitated on the ward to identify whether it meets the patient’s needs. The social worker will be involved in these assessments and decisions and advice will be sought, as they will recommend what level of care is appropriate for that patient. The social worker will also check the patients financial & benefit status. Social workers are based at Bluebird lodge; in their absence the duty social worker at the local trust can be contacted. Transport is provided by the East of England Ambulance Service and requires at least 24 hours notice. The group reported they always determine whether the family is able to transport patients’ home, but often due to mobility & transferring problems they are not able to help.

For end of life patients, Social workers encourage staff at BBL to complete the fast track NHS continuing care funding tool. Decision support tool has to be completed by at least two clinicians who are involved with the patient. The matron reported the NHS Continuing Care Funding always takes a very long time to arrange and the decision support tool is very difficult to complete. Further training is required for some members of staff was stated as a requirement. The Continuing Care team informs the family in writing of the decision whether the patient receives funding or not. There have been occasions whereby the District nurse has completed in excess of 70 pages for one patient.

Palliative Care

Staff reported that some patients’ condition deteriorated following transfer from a different setting and relatives sometimes find this difficult. The Matron stated the LCP is implemented when the team acknowledges that the patient’s primary need is end of life care and that discharge planning is not applicable. The team explains the process sensitively to the patient and their family carers. The team liaises with the Macmillan Team and works with the Hospice at Home team when the patient expresses a wish to die at home. The hospital has no audit at present.

Staff raised the following issues in relation to their role:

Education

Issue 10.4/1 Lack of staff with experience in palliative care

Issue 10.4/2 Free training is no longer available and the hospice now charges for training Issue 10.4/3 Lack of approved training programmes with involvement of SCH staff Issue 10.4/4 When they are short staffed, and they have patients that are very high dependency they don’t have as much time as they would like to look after palliative and end of life patients. Issue 10.4/5 The current process for approving funds takes too long.

Discharge

Issue 10.4/6 BBL staff refer patients to the Continence Team on occasions. Have experienced problems with this team on various occasions where they don't always go out to see the patient when they say they will. Patients are left with no continence packs

- 220 -

Issue 10.4/7 Currently, patients who are admitted as a step up from the GP have more flexibility in length of stay as directed by the GP and nursing staff. The criteria for step down patients under a Consultant led route is more clearly defined Issue 10.4/8 meeting peoples expectations and needs with regards to funding when patients are discharged

Issue 10.4/9 Don’t often discharge at weekends

Information

Issue 10.4/10 When patients arrive staff request a medical summary from the patients GP practice. The amount of information varies per practice. Issue 10.4/11 Would hope that the medical staff at the hospital would inform the patient of their diagnosis and prognosis. But this does not seem to be the case all the time and we don't know if a patient has been told. Issue 10.4/12 No one has responsibility for making sure that leaflets or information are up to date. Issue 10.4/13 Some people don’t have access to the internet

Access

Issue 10.4/14 The length of stay can sometimes become an issue with End of Life patients Issue 10.4/15 Flexibility on bed availability Issue 10.4/16 For inpatient unit, resource is needed for 1:1 care for patients who are at end of life Issue 10.4/17 Not easy to find interpreters. Have used language line to but were told that the PCT had not funded this service. Issue 10.4/18 Lack of an equitable Macmillan service across the county –would like to have a Macmillan Nurse in Aldeburgh that can be called upon in the same way it is possible in Felixstowe

Care Package

Issue 10.4/19 There is a lack of care packages available Issue 10.4/20 Resources of Macmillan nurses has been reduced

Equipment

Issue 10.4/21 There are delays with Central Equipment Store. Nurses have had to take equipment out to patients houses because there have been delays with CES, sometime the delay could be a week Issue 10.4/22 CHC funding process is lengthy: DST has to be completed by at least two clinicians and then approved by the CHC funding team

- 221 -

Issue 10.4/23 Patients unable to administer their own medications – difficult to find someone to assist if the visits don’t coincide with a visit by the carer

Transport

Issue 10.4/24 If hospital transport are taking a patient home. They won't take equipment in the ambulance e.g. mobility aids. BBL have to rely on staff or families Issue 10.4/25 Cannot book a specific time for transport to pick patients up. They either give an am or pm time and sometimes patients are taken home in the dark especially in the winter

Coordination

Issue 10.4/26 There has been an increase in high dependency of patients. Lots of patients that need to be hoisted and need lots of care. Issue 10.4/27 Not all MDT members included in Eol care Issue 10.4/28 No key worker identified Issue 10.4/29 Some Harmony GPS lack knowledge

Family and Carers

Issue 10.4/30 Limited facilities for families to stay at community hospital

Issue 10.4/31 Relatives find it difficult to understand when patients are moved to another location

Medication

Issue 10.4/32 Difficult to support patients at home with medication

Choice

Issue 10.4/33 Request on referral for urgent transport but sometimes patients don't want to move anymore Issue 10.4/34 A discussion with the patient takes place as to their preferred place of care. What the patient wants and what they get is sometimes very different and their family may have different ideas as well. Issue 10.4/35 Lack of privacy for palliative care patients

Issue 10.4/36 Lack of “at home” care – maximum of 4 visits per day and not able to provide 24/7 care

- 222 -

Spiritual Care

Issue 10.4/37 There is a lack of spiritual support

The following suggested improvements were made in relation community hospitals:

Education

Suggested Improvement 10.4/1 Develop a training programme for staff dealing with palliative care patients or an improved training programme Suggested Improvement 10.4/2 Involve SCH staff in the development of a training programme Suggested Improvement 10.4/3 Provide more training for staff on NHS CHC process Suggested Improvement 10.4/4 funding for courses would be an advantage Suggested Improvement 10.4/5 Increase level of core education of emergency care Suggested Improvement 10.4/6 More flexibility of increasing staff with experience in palliative care

Coordination of pathway

Suggested Improvement Develop a flexible approach to the bed capacity 10.4/7 Suggested Improvement Improve communication about where the patient is on the end 10.4/8 of life pathway Suggested Improvement Do not use identified beds for step down purposes 10.4/9 Suggested Improvement Increase resources to maintain patients at home 10.4/10 Suggested Improvement Nursing beds should be local 10.4/11 Suggested Improvement Keep care local 10.4/12 Suggested Improvement Increase the skill mix of staff with palliative experience 10.4/13 Suggested Improvement Identify and develop a key worker system to focus on getting 10.4/14 patients home quickly if that’s what they want and sorting out finances afterwards Suggested Improvement Provide a seamless service 10.4/15 Suggested Improvement For inpatient unit resource is need for 1:1 care for patients 10.4/16 who are end of life

Suggested Improvement EOLC patients would benefit from an MDT meeting– OT / 10.4/17 Physio/ Salt / Dietician could be included Suggested Improvement By transferring palliative care to patients own GP could 10.4/18 increase flexibility

- 223 -

Information

Suggested Improvement Develop a robust information service 10.4/19 Suggested Improvement Include all MDT members in patient care decisions 10.4/20 Suggested Improvement Increase spiritual support for patients, families and carers 10.4/21

Medication

Suggested Improvement Develop a system to support self medication that is continued 10.4/22 after discharge

Equity of service provision

Suggested Improvement Provision of an equitable Macmillan service across county – 10.4/23 would like to have a Macmillan Nurse in Aldeburgh that can be called upon in the same way it is possible in Felixstowe

Capacity of service provision

Suggested Improvement Resource to maintain care at home 10.4/24 Suggested Improvement To have capacity to increase the number of beds to 10.4/25 accommodate EOLC patients in an emergency situation to prevent an acute admission Suggested Improvement Provision of a generic worker to assist with palliative patients 10.4/26

- 224 -

10.5 Care Homes

Introduction

In Suffolk there are 224 Care homes registered with the Care Quality Commission. The Care Quality Commission (CQC) is the health and social care regulator for England. The following categories are now used by the CQC; Residential Care homes, Nursing Homes and Dual registered Homes. Within the 224 Care homes they offer approximately 6000 places and accommodate all areas of need and customer group. 16 Care Homes are currently provided by Suffolk County Council, 4 of which provide Intermediate Care.

Methodology used to gather information

Information regarding the delivery of care for individuals requiring palliative care or end of life care in care home settings was collected using the following methodologies:

• A questionnaire was sent out to Managers of Care Homes and a total of 15 responses were returned. Questionnaires were sent to all 16 ACS Care Homes, a distribution list managed by the Suffolk Independent Association of Care Providers who have 350 providers of care listed How many were sent out? • Telephone interview with 1 ACS Care Home manager • Consultation with the Contracts Manager at Adult and Community Services

Detailed results of the questionnaire are presented in the annexe.

Care homes who received the questionnaire were requested to place themselves in the following categories;

• Residential care homes care homes without nursing • Nursing homes – care homes with nursing • Dual registered Homes care homes that have both residential and nursing residents.

The investigation focused on: the role of the Care Home, communication with other professionals, assessment and documentation of care, access to palliative care, advice and services, the use of end of life tools, strengths and challenges in palliative care, training and education.

Care Home Placements

Individuals referred to care homes can be privately funded, funded by Adult and Community Services (ACS) and means tested, or funded by NHS Continuing Health Care Funding. For patients funded by ACS, they may also receive a contribution to registered nursing care funded by NHS Suffolk (FNC – funded nursing care).

In Suffolk, Adult and Community Services will only agree to fund a care home placement in care homes who have been accredited by Suffolk County Council. Adult and Community Services have contracts with care homes to ensure they meet quality standards and local arrangements. However, the majority of care home placements are spot purchased. Residential homes are not expected to provide equipment above that which would be expected to be found in the patient’s own home. Patients can be admitted from their own homes, very sheltered

- 225 -

housing, a hospital, another care home or a Hospice. Only 1 of the care homes who responded to the questionnaire said they had a dedicated palliative care bed.

Residential homes do not have registered nurse cover and are staffed by carers. Nursing homes have trained nurse cover at all times.

The type of care home most appropriate to a persons needs is usually decided following a community care assessment and a health needs assessment. If funding is sought, this application will be reviewed by the decision panel (relating to the relevant area team in ACS) to quality assure the decision process.

The decision to admit to a particular care home will be determined usually by patient or family choice but will be also be dependant on an assessment of the care home to establish that they are able to meet the assessed needs.

Assessment and documentation of care

The majority of care homes reported that they have discussions with patients regarding their care plan for end of life care, but some care homes state that this may only occur sometimes. It was identified that some care home staff have difficulties with approaching and discussing the issues of the end of life stage with patients and families, which can cause delays in documenting and planning for the future. Where discussions were taking place, half of the care homes reported that they usually included the patient’s relatives and all discussions were documented. There was evidence to suggest that most care homes review the care plan regularly.

The use of end of life tools

The majority of care homes who responded to the questionnaire stated that they were actively using the Gold Standards Framework, and a few reported that they were working with the local hospice to develop the use of the Liverpool Care Pathway (LCP).

One care home commented that “we would like to adopt the LCP but to do so we would need confidence in our GP surgery, and the assurance that this could be used in partnership to ensure robust communication links creating the best outcomes for residents. Without this we are not currently confident in using the LCP.”

Communication and access to professionals and services

In caring for residents at the end of their lives, responders noted that they had regular contact with the following;

• GP • Out of Hours GP • District nurses • Social workers

They reported that they had less contact with specialist palliative care nurses and community matrons. The main route for accessing health advice and support when a patient is at the end of life stage was reported as generally through the GP surgery (or on call system), local Hospice or Macmillan nurses.

- 226 -

Training

The majority of respondents stated that they had received training relating to palliative and end of life care but would benefit from further training. The areas identified included:

• Dementia • Cancer • Pain control • General palliative care • Care planning and record keeping • Parkinson’s disease • Bereavement • Stages of dying • Communication with family • Dealing with breathing difficulties

Challenges and strengths to enabling patients to die in the care home

The general consensus from the respondents is that staff in Care homes feel they strive to provide good care for palliative and end of life patients and maintain their dignity. In general they have good knowledge of the patient; they build relationships with the family and aim to perform in an honest, open and supportive manner. They receive good support from the Hospice at Home service where it is available and the involvement and support of Macmillan and Marie Curie nurses was evident in the report. They work proactively to care for patient’s right up to the end of their lives, and to ensure that they remain in their home, if this is their choice.

It was suggested that extra care staff hours at the time of the last stages of life, could improve services and one responder quoted “no one should die alone or others lose out because there is not enough staff available”. It was clear that most homes would benefit from developing more robust use of the end of life tools and more detailed training for all staff.

The following issues were raised as barriers to effective palliative and end of life care in Care Homes and have been themed as follows:

Training and Attitudes

Issue 10.5/1 Families do not always understand changes in breathing patterns at end of life and staff find this difficult to communicate. Issue 10.5/2 Too often care staff will question why someone is not going to hospital for what they feel is “special care’ when the care we provide is of good quality and a high standard towards the last days of any ones life. Issue 10.5/3 Having enough knowledge and training to support their decision. Issue 10.5/4 Family also can be a challenge with residents who make a personal choice to remain in the home at the end of life stage.

Issue 10.5/6 Staff feel very uncomfortable about asking the questions about end of life care, and often families have not thought that far ahead. Issue 10.5/7 Quality training for staff identifying the need for quality recording. Issue 10.5/8 Staffing levels and skills to deal with a specialized area of care, - 227 -

Especially associated family need and counselling etc Issue 10.5/9 Training offered needs to be free so often NHS get it free and we have to pay a lot. Yet we are the ones providing the service

Service Issues

Issue 10.5/10 Staffing levels Staffing costs to have extra staff in to support dying person and family Issue 10.5/11 when needed Extra staff hours at the time it is required, no one should die alone or Issue 10.5/12 others lose out because not enough staff, staff dilemma at these times

Access

Issue 10.5/13 Hospice at home appear to be mainly for cancer patients

Psychological Support

Issue 10.5/14 Many staff in the care homes have not seen anyone die.

Family & Carers Support

Family also can be a challenge with residents who make a personal Issue 10.5/15 choice to remain in the home at the end of life stage. Issue 10.5/16 Giving family support prior to their family members passing away

Information

Issue 10.5/17 Ensuring that there is good communication with the family, that the medical team are aware of the wishes of the family (as representative of resident) ensuring that they are fully involved in decisions and are informed of all changes and what is happening.

Diagnosis & Prescribing of Drugs

Issue 10.5/18 GP’s not prescribing until symptoms change, then its often very difficult to get the drugs quickly Issue 10.5/19 Improved access to palliative care drugs as sometimes a delay in symptom control where GP’s are slow to prescribe. and the Issue 10.5/20 Drugs are then difficult to obtain if out of hours. Issue 10.5/21 Obtaining necessary medication as have to do this via GP, prescription and finding a chemist who stocks this takes a lot of time in some cases resulting in delay in commencement of treatment

Choice & Appropriate Environment and Care

Issue 10.5/22 not always able to contact other professionals for advice and support.

- 228 -

Co-ordination & the End of Life Care Pathway

Issue 10.5/23 Lack of contact with Gp’s at end of life stage Issue 10.5/24 Gp’s & DN’s willing to undertake and support the LCP

Out of Hours

Issue 10.5/25 Lack of understanding from ambulance/on call doctors

Quality of Care

Issue 10.5/26 Having access to specialist care e.g. night nursing staff if health of resident deteriorates to point that night support worker is unable to provide the care or does not have the expertise required to identify health needs.

The following recommendations were suggested:

Suggested recommendation More access to specialist palliative care nurses 24/7 10.5/1 Suggested recommendation Offer counseling for care workers, when necessary to help 10.5/2 them through end of life care situations Suggested recommendation There needs to be training provided to allow for care 10.5/3 workers to feel more comfortable and confident to care for someone at the end of life stage Suggested recommendation Training in the area of how to communicate with family and 10.5/4 carers – this will give the care worker confidence in answering questions. Suggested recommendation Rolling program of education in end of life care required 10.5/5 Suggested recommendation Improve the provision of palliative care beds in Care Homes 10.5/6 Suggested recommendation Ensure that all Care Homes are completing advance care 10.5/7 planning Suggested recommendation Encourage the takeup of GSF and LCP by all Care Home 10.5/8 providers Suggested recommendation Encourage all GP practices to be supportive with Care 10.5/9 Homes engaged in using the LCP Suggested recommendation Develop relationships between specialist palliative care 10.5/10 nurses and care homes Suggested recommendation Increase the opportunity of disease specific and specialist 10.5/11 end of life care training Suggested recommendation Increase opportunities to enable 11 staffing levels when the 10.5/12 patient is in the end stage of life, in order to support the patient and their family as well as giving staff the opportunity to provide quality care. Suggested recommendation Care workers feel, it is not appropriate to say to families 10.5/13 “end of life” staff require more training in communication skills when approaching such issues. Suggested recommendation Rolling programme of education required 10.5/14 - 229 -

Suggested recommendation Being able to support staff team through the situation, offer 10.5/15 counselling when necessary Suggested recommendation There needs to be training provided to allow care workers to 10.5/16 feel more comfortable and confident in caring for someone at the end of life stage. Suggested recommendation Training in the area of how to communicate with family and 10.5/17 carers will give the care worker confidence in answering questions. Suggested recommendation Gp’s need to improve the speed of prescribing drugs 10.5/18 Suggested recommendation Ensuring that adequate support is available from the 10.5/19 community health team. Suggested recommendation We would like to adopt the LCP but would need confidence 10.5/20 in our GP surgery and assurance that this could be used in partnership to ensure robust communication and best outcomes for residents. Suggested recommendation Access to quality GP support Out of Hours in relation to pain 10.5/21 relief in particular. Suggested recommendation Need proactive prescribing from Gp’s to facilitate symptom 10.5/22 control, especially at night and weekends, when its difficult to get drugs. Suggested recommendation Giving anybody who shows interest in palliative care and 10.5/23 end of life care the opportunity to do some training. Suggested recommendation Would really like to have more staff training and extra hours 10.5/24 to support the staff in caring for the person correctly at end of life stage. Suggested recommendation Support groups for staff 10.5/25 Suggested recommendation Training days with funeral homes to give insight in how to 10.5/26 advise and reassure relatives. Suggested recommendations Access for care homes to hospice support if staffing levels 10.5/27 prevent someone from ending their days in the care home

- 230 -

10.6 Prisons

The healthcare, particularly palliative care at the following establishments was investigated using the following methodologies;

• Awareness meeting with the Healthcare leads from each prison • Distribution of questionnaire 1 responder with greater than 10 years experience in prison healthcare

In NHS Suffolk there are 4 prisons those being:

• Highpoint • Edmunds Hill • Hollesley Bay • Warren Hill

The responsibility for commissioning health service transferred to the PCT on the 1st April 2006. Prison health services with the exception of GP services are due to be tendered in the near future with a new accountable provider in place by July 2011. The intention is to integrate GP services in the West by April 2014 when the current contract comes to an end; services in the East are being reviewed.

HMP Edmunds Hill

Edmunds Hill is a category C13 male resettlement prison with an operational capacity of 379 places. The prison normally accepts prisoners who have one year or less of their sentence to serve. It does not accept people with life sentences or those with serious mental health problems. The main feeder prisons are Pentonville, Wandsworth, Brixton and Wormwood Scrubs. The prison is arranged in seven units, with three in old buildings for prisoners on a basic regime, two units in two new buildings plus an enhanced regime unit. Accommodation is in a mixture of single and double cells.

The focus is very much on work and training as a means to help prisoners resettle into the community. There are a range of courses available, such as gardening, hairdressing and IT. Five years ago the prison was changed from a female prison and was formerly known as Highpoint North. There are currently plans for a merger with HMP Highpoint in late 2010.

HMP Highpoint

Highpoint is a larger prison with an operational capacity of 944 male prisoners in eight units. It is a category C training prison which accepts people with sentences up to and including life, but also houses some category D14 prisoners. The prison includes a lifer unit accommodating 40 prisoners in modern accommodation. The prison offers special courses such as PASRO (Prison Addressing Substance Related Offending) and which has a voluntary drug testing facility. All prisoners are housed in single cells with the exception of the induction unit which has double cells, and the prison has an enhanced unit. The prison also takes prisoners predominantly from London prisons such as those listed above.

13 Category C: Prisoners are those who cannot be trusted in open conditions but who are unlikely to try to escape. 14 Category D: Prisoners are those who can be reasonably trusted not to try to escape, and are given the privilege of an open prison. - 231 -

HMP and YOI Hollesley Bay

Hollesley Bay is a category D open prison. It has an operational capacity of 330 male prisoners in single cell accommodation (although there are two double cells) across five units. The population includes up to fifty young offenders (18 to 21 years old). This is a resettlement and working prison for prisoners at the end of their sentences. There are specific entry requirements to be transferred to Hollesley Bay, and it will not accept any sex offenders or prisoners who have committed arson. The main feeder prisons to Hollesley Bay are Chelmsford, Edmunds Hill, Highpoint, Norwich and Blundeston.

Warren Hill (including the Carlford Unit)

Warren Hill is a Category C male prison for juveniles. It accepts males from the age of 15 to 17 years, with some staying to age 18 only if they are completing a sentence that will last less than a few months or awaiting transfer to a YOI. The operational capacity is 222 places in single cells. This includes a separate self contained unit for section 19 offenders serving sentences of at least five years (the Carlford Unit). Some 95% of the prisoners (known as trainees) come directly from court – there are very few transfers. The average sentence length is around four months, and the large majority of trainee are released back into the community.

Warren Hill provides education and skills training rather than work, using a 1419 yrs vocational curriculum. There are approximately 18 looked after children in the prison, and there is a residential social worker based at the prison.

Staff stated that there are communications mechanisms with the palliative and end of life patients GP or consultant .Normally end of life patients are transferred to a 24 hour in patient and often a temporary license is requested. The lack of healthcare facilities, including staffing levels was stated as an issue also concern was raised regarding the patient often not being near their family.

The current service provision within the prisons operates with a number of providers, these are listed below.

- 232 -

Table 1 Current Providers and Services into HMPs

Provider HMP Edmunds Hill HMP Highpoint Dentist (Weymouth One session one week and two sessions the next week Four sessions a week = two days Prison Dental Services) GPs (The Practice) MonFri Clinical Sessions (no Bank holiday cover on site or on call): On site 08301230 On call 12301830 (Highpoint GP) MonFri On call 08000830 Sat On site 08301700 On site 09001000 On call 17001830 On call 10001200 (Highpoint GP) For both Edmunds Hill and Highpoint in the morning, Sat clinic time seeing patients is from 08301130 and then an On site 10001200 hour of admin/seg unit visit time from 11301230 (during On call 09001000 (Edmunds Hill GP) prisoner lockdown). For Highpoint in the afternoon the clinic time is 14001630 On call rota operates between 18300800 MondayFriday and Sunday with the direct numbers of doctors on call who will contact Harmoni if there is a need for an onsite visit. IDTS Sessions Edmunds Hill Highpoint Mon 08301230 & 14001600 No Bank holiday Fri 08301230 & 14001600 No Bank holiday cover cover

Edmunds Hill or Highpoint Dr Haas and the CARAT manager also have lunchtime Thu 08301230 & 14001600 No Bank holiday meetings on Mondays and Thursdays to discuss all of the cover IDTS patients.

GUM (Harmoni take Healthcare currently screen for Chlamydia for prisoners aged under 25 and prisoners requiring screening for other STIs over in ……….. are usually referred by GP to secondary care at Hospital. Blood Borne Virus BBV specialist nurse employed by PCT works one day a week. Makes referrals to appropriate other services. Service (SCH) Mental Health inreach The service is available Monday to Friday, 09001700 The service is available Monday to Friday, 09001700 hours nurses (SMHPT plus hours specialist Service provision shared with Edmunds Hill psychotherapist and 1 half time CPN/Team Leader SCH) MH team contact outside agencies prior to discharge 2 full time CPN - 233 -

1 half time CPN The prison mental health service currently comprises: 1 Administrator/4 days a week • programme to tackle anger management Clinical psychologist/3½ days a week, Band 8 • trauma counselling is available through the inreach Psychiatrist 2 sessions a week mental health service

Counselling and trauma therapist available Team have links with community Mental Health teams Out of hours: PMH first line of response then referral to secondary mental health inreach. Substance Misuse Drugs: CARAT with STOP and PASRO (Phoenix Futures) IDTS 12 week rolling course, 1 to 2 sessions a week Alcohol: INCELL Pack and group sessions Detox service and voluntary drug testing available Prison Health Service Healthcare Manager Healthcare manager (SCH) Band 6 *2 team leaders (vacant) Band 6 *4 team leaders 1 vacant Band 5 Band 5 posts *4 full time Band 5 *4 Band 5 nurses *2 part time Band 5 part time *2 HCA Pharmacy technician full time Pharmacy technician Band 6 PMHW Pharmacy assistant 1 HCA 1 PMHW Band 6 1 Admin Post Wellman clinic, hypertension clinic, older person’s clinic, tissue viability, asthma clinic, prerelease and smoking cessation available. Prisoners first seen in reception by a nurse and assessed. Healthcare manager oncall shared with Highpoint. IDTS Clinical Lead 0.5 Clinical lead 0.5 Band 3 HCA IDTS Nurse band 5 full time Band 5 nurse Healthcare Assistant full time Admin 0.5, Band 3

East of England Out of hours GP support Ambulance Service Diabetes Nurse (SCH) Diabetic clinic monthly

Optician (Independent As and when requested, normally 46 weeks Contractor Spectacles ready within two weeks for collection Specsavers) - 234 -

Pharmacy (Boots) Medicines provided by Boots. Weekly visits by the Medicines provided by Boots. Weekly visits by the pharmacist pharmacists to check and validate prescription charts. to check and validate prescription charts. Physiotherapy Accessed through referral to acute hospital

Dieticians Referred to West Suffolk Hospital if necessary

- 235 -

Provider HMP & YOI Hollesley Bay HMYOI Warren Hill Dentist (Independent Two sessions one week and then one session the next Dentist and dental nurse visit once a week. contractor Weymouth week. Dental Practice) GPs (Local GP 2/3 GPs, two of whom are employed as parttime prison 2 parttime medical officers attend Monday to Friday. Practice Medical medical officers. They attend on a daily basis, Monday to Out of hours cover provided by Harmoni Officers employed by Friday. Out of hours provided by Harmoni. HM Prison Service) GUM (Harmoni) Fortnightly clinics to both prisons and results are telephoned through on alternate weeks.

Blood Borne Viruses BBV nurse works one a day week promotes testing and No BBV nurse at this prison. A general nurse works with the (BBV) (NHS Suffolk) vaccination and raises awareness. Makes referrals to GUM consultant to test for BBVs. appropriate other clinics such as sexual health. A nurse at Hollesley Bay is an infection control link nurse. Infection control nurse available at PCT. Mental Health inreach One CPN Band 6 one day a week and 6 consultant The CAHMS service consists of 1.6 Band 6 nurses (SMHPT) nurses psychiatrist sessions a year. 0.4 wte psychology 1.0 wte Band 4

The service operates Mon – Fri 9am 5pm Substance Misuse Drugs: CARAT with STOP and PASRO (Phoenix Futures) IDTS: 12 week rolling course 1 to 2 sessions a week. Two types of intervention are provided, a psychosocial aspect which covers healthy lifestyles and a clinical aspect which covers treatment such as methadone substitution. Alcohol: INCELL Pack and group sessions Detox service and voluntary drug testing available Prison Health Service Mon to Fri 07001700 24 hours a day, seven days a week (SCH) Sat and Sun 07001430 Healthcare Manager Band 7 Healthcare Manager Band 7 Band 6 substance misuse nurse full time Primary mental health practitioner Band 6 Band 6 full time team leader Band 5 full time Band 6 full time PMHW Band 5 30hours Band 5* 5 full time nurses Band 5 22.5 hours per week Admin support full time Band 3 Band 4 admin full time Hepatitis clinic, GUM clinic, prison discharge clinic, smoking Epilepsy, smoking cessation and prison discharge clinics cessation, vaccinations clinic. are available.

- 236 -

Out of hours healthcare provided by Warren Hill Nursing staff. IDTS Team leader Band 6 IDTS Lead Band 5 30hours Band 5 37.5 hours Band 3 15 hours admin

East of England Out of hours GP support Ambulance Service

Optician (Independent Provider called in monthly and as required for eye tests and prescriptions contractor Healthcall Optical) Pharmacy (IHT) Daily deliveries; one box delivery at 4pm as a result of faxed order. Both prisons served by same pharmacy technician who visits Hollesley Bay twice week, Warren Hill once a week and Carlford Unit once every 23 weeks. Pharmacist visits each prison every 23 weeks. There is a Medicines Management Group which meets to discuss pharmacy issues. Psychiatrist Referrals can be made by the inreach team CAMHS consultant works one session per month

Physiotherapy No physiotherapist on site Available (provided by PCT) (Independent contractor) Health A Health Trainer Champion programme has recently Promotion/Education commenced where prisoners are trained to signpost and support other prisoners with health issues. This is embedded within the wider learning curriculum to ensure sustainability.

- 237 -

11. East of England Ambulance Service NHS Trust

The East of England Ambulance Service NHS Trust (EEAST) was created on July 1 2006 following the merger of three services covering Norfolk, Suffolk and Cambridgeshire, Bedfordshire and Hertfordshire and Essex. The Trust provides ambulance services for emergency calls, urgent patient transfer and planned transport services.

Information regarding the East of England Ambulance Service NHS Trust and the services it provides in Suffolk was obtained using the following methodologies:

• A combined interview with an emergency service duty operational manager and a patient transport manager • Questionnaires were given to all ambulance service crews and PTS staff who visited the Emergency Department over a period of 3 weeks (9th – 30th June 2010). 60 questionnaires were returned. Annex 10. • A case study provided by a student ambulance paramedic.

Information was also sourced from EEAST’s DNAR guidance in relation to known palliative care patients for PTS staff 15 and was also provided by an NHS Suffolk service delivery and contract manager with commissioning responsibilities in relation to patient transport.

Service Structure

The East of England Ambulance Service covers three geographical areas:

• Norfolk, Suffolk and Cambridgeshire • Bedfordshire and Hertfordshire • Essex

Each area has its own operational managers for different services: emergency, urgent patient journeys and patient transport services.

Service Provision

Emergency Service

East of England Ambulance Service is commissioned by NHS Suffolk to provide an A&E service across the county. This includes responding to emergency calls via 999 or urgent patient journeys requested by healthcare professionals to transport patients to an alternative healthcare setting.

All 999 calls and requests for urgent patient journeys go through a central control centre in Norwich. Health care professionals have an alternative single point telephone line for urgent patient journeys. The calls are triaged through a computer system and categorised A, B and C.

Category A emergencies are those deemed immediately life threatening and the target is that an ambulance response should arrive at 75% of these calls within eight minutes of the call being connected to the control room.

Category B emergencies are those not deemed immediately life threatening and the target is to arrive at 95% of these calls within 19 minutes.

15 East of England Ambulance Service. DNA-CPR flowchart and checklist. 10.11.2009 - 238 -

Category C calls are not immediately serious or life threatening and should be responded to within 45 minutes as a nonblue light response or referred to another NHS provider such as their own GP or NHS Direct by health care professionals working in the ambulance control centre.

The control centre searches for the nearest appropriate responder which could be:

Paramedic – These have a professional qualification in advanced life support and emergency care and are able to do some invasive procedures such as cannulation, and have the largest list of drugs that can be administered.

Ambulance Technician – These have had three weeks driving training and 10 weeks training in clinical patient assessment, intermediate life support and the administration of life saving drugs. They then work for a year before qualifying as a technician. There should always been at least one person on the crew with one year’s experience. They can administer approximately 10 drugs but not intravenously as they do not have the skills to gain IV access.

Emergency Care Practitioner – These work alone, manning a car. ECPs are clinicians who have undertaken advanced medical training including a one year university based ECP course and have advanced clinical assessment and treatment skills. They are able to provide face to face assessment and treatment. They have access to a wider range of drugs than a paramedic and are also able to request diagnostics or refer to another agency such as social services or health care. ECPs primarily respond to emergency calls but also work closely with the out of hours GPs to prevent acute admission by treating people in their home setting.

Ambulance Support Worker – These usually work in pairs and have had three weeks driving course and five weeks clinical/practical training. These usually take the urgent transports but can be sent to a 999 call if they are the closest. They will be joined as soon as possible by a qualified member of staff or crew.

Community First Responder (CFR) First responders help provide emergency lifesaving care to patients. They are charities founded and run by volunteers who give up their spare time to attend appropriate 999 calls directed through ambulance control. The oncall CFR is dispatched by ambulance control at the same time as an ambulance response and because by definition they live in the area where the incident has taken place, they can be first on the scene, providing essential treatment, while ambulance crews travel to the scene.

Urgent Patient Journeys

This is not an emergency but a request for an equipped vehicle and crew to transport a patient to hospital or another healthcare setting. Requests for urgent patient journeys usually come from GPs but can be requested by other healthcare professionals. They are able to request that the transfer be made within a certain timescale based on the urgency i.e. the default for an urgent patient journey is within four hours but this can be accelerated to within two hours or to within one hour. It was reported that GPs in Suffolk make very realistic assessments in relation to the geography and rurality of where the patient has to be transferred from. Emergency calls will always take priority over an urgent patient journey.

Patient Transport Service

EEAST has a contract with NHS Suffolk to provide patient transport services which covers the whole of Suffolk. Independent ambulance providers can also be commissioned to support both the PTS and the Emergency Service. The PTS operates five days a week from 08.00 – 17.00 hours in West Suffolk and 08.00 – 18.00 hours in East Suffolk. The provision of weekend transport for patients is out with the main contract with the PCT. At West Suffolk Hospital, for the discharge process only, ad hoc transport can be provided at weekends either by EEAST or an independent

- 239 -

ambulance provider. At IHT there is a similar arrangement where they commission transport from independent ambulance providers if required.

The following issues were raised in relation to service provision:

Issue 11/1 Emergency calls are triggered by relatives or patients panicking with increased pain or other symptoms.

Issue 11/2 The majority of calls to the emergency service occur at night.

Issue 11/3 Families are often not aware of what will happen or how to access services Issue 11/4 The service does not receive information sent by GPs to the OOH Service relating to palliative patients. Issue 11/5 Staff are unable to input palliative information into the CAD system as permission is required from the household address. Issue 11/6 During OOH families appear more anxious and often no clear information is available. For example, DNAR or what they should expect when nursing a loved one at home. Issue 11/7 There is confusion around admission prevention services Issue 11/8 Crews are rushed and families need time to discuss etc. Issue 11/9 It is difficult for the PTS to fast track end of life patients due to current contract arrangements. Issue 11/10 The PTS often ask the hospital to prioritise patients. Issue 11/11 The PTS is affected by an urgent need to release beds and move patients Issue 11/12 The PTS process is not consistent across Suffolk. Issue 11/13 There is no weekend transport available from the West Suffolk Hospital. Issue 11/14 There is no consistency with booking support for the patient at home and there have been examples where no oxygen was available at the patient’s home when the patient was discharged. Issue 11/15 There is an expectation from acute staff to drop other commitments which is often difficult Issue 11/16 Information is not freely available when emergency PTS is booked in A&E department Issue 11/17 Risk assessment is required in the home environment prior to discharge Issue 11/18 Current transport commissioning arrangements restrict flexibility Issue 11/19 Homes can be difficult to access with a stretcher. Issue 11/20 Nursing home lifts are often too small to accommodate a stretcher Issue 11/21 Staff are not trained for hoist technology because there are too many different designs. Issue 11/22 Patient Group Directives are not robust enough to enable crews to administer medication Issue 11/23 Cars cannot transport end of life patients Issue 11/24 If ECP administers morphine medication they are then required to transport the patient to hospital. Issue 11/25 More information is needed on services available. Issue 11/26 More information is needed on contacting appropriate services especially OOH. Issue 11/27 Lack of Information about available resources in the locality. Issue 11/28 More information is needed i.e. a handover. Issue 11/29 Lack of information about Other services and agencies available to us for these patients locally.

- 240 -

Issue 11/30 Lack of Information about the care provided. Issue 11/31 How the palliative care system works. Issue 11/32 How to access services independently of OOH GPs. Issue 11/33 How to access district nurses or other services. Issue 11/34 Available resources

The following suggested improvements were made in relation to service provision:

Suggested Improvement Support for frontline staff particularly with communication and access to:

• Admission prevention services • Care plans • DNAR procedure • Medication guidelines • Flexibility in choice for the patient and the families • Crews are rushed and families need time to discuss etc

Suggested Improvement Palliative care nurse teaching included in Core Practice 11/1 Development training

Suggested Improvement Better access to the hospice. 11/2 Suggested Improvement More information prior to arriving on scene. 11/3 Suggested Improvement More integration of services so if there is a care plan crew 11/4 are aware before arrival on scene

Suggested Improvement Hospital staff to ensure oxygen has been delivered at the 11/5 patient’s home prior to patient discharge

Booking transport

The current process for booking transport varies between East and West Suffolk. Requests for transport can be made by GPs, staff in the acute trusts, Suffolk Community Health and Suffolk Mental Health Partnership Trust. An assessment of the patient’s eligibility for transport is made and the request is passed to the acute trust transport desk before being passed to EEAST. In some circumstances GP practices, particularly OOH, Suffolk Community Health i.e. community hospitals and the acute trusts may refer directly to EEAST. For example IHT renal and acute wards sometimes refer directly and at WSH direct referrals to EEAST are made in relation to admission prevention and ‘on the day’ discharges. The PTS rarely transport a patient to hospice but requests from the hospices (via HEOC A&E) will be assigned to the PTS if appropriate.

NHS Suffolk commissioners in partnership with NHS Norfolk are currently developing a Patient Transport Clinical Assessment and Advice Service which will include either a single or multiple point of access, core standards, continuity of application of criteria, IT compatibility and flexibility to integrate with planners and transport providers. The outcome of this new service will be to enhance patient satisfaction and data quality. Service staff competencies will include local knowledge, communication skills and ability to consider the need for medical advice.

The following issue was raised in relation to booking transport:

Issue 11/35 Eligibility assessment criteria are not always applied.

- 241 -

Palliative Care Patients

Palliative care patients are triaged in the same way as all other callers depending on their symptoms, emergency teams would not know if the caller was a palliative patient. Staff assess their patient and are able to obtain advice from EEAT on call clinical team if the patient is at the end of their life. West Suffolk Hospital Trust palliative care team provide information Monday to Friday to the control centre which is cascaded to operational managers although it was reported that this is unlikely to reach the crews. The service does not receive specialist palliative care information from GPs to the OOH service.

Ambulance crews can receive information about a patient’s palliative care needs/end of life status from a variety of sources. These include the OOH handover form, the patient or relative will state on arrival or they are informed by control on the call allocation.

Issue 11/36 Emergency teams don’t know if a patient is palliative. Issue 11/37 A list of palliative and end of life care patients is provided to EEAST control centre by WSHT Monday to Friday but apparently this is unlikely to reach the crews.

Do Not Attempt Resuscitation (DNAR)

EEAST PTS are currently working to DNAR guidance for known palliative care patients and should be advised at the time of booking of the DNAR status for a planned palliative care patient journey. In the event of a patient being registered as DNAR the crew need to be able to evidence that the DNAR order remains valid and is still the wishes of the patient and/or family as treatment progress. DNAR orders may only be valid for the duration of an inpatient episode or whilst under the care of the consultant who has detailed the DNAR order. For transportation of these patients the DNAR order must be proven to be valid and to have been reassessed within the last fourteen days. A DNAR order that is dated over fourteen days earlier is not valid and CPR must be attempted.

Ambulance crews receive information about a patient’s DNAR status from a variety of sources. These include the DNAR order available in the patient’s home, the patient or relative will state on arrival or the crew are informed by control on the call allocation

The following issues were raised in relation to DNAR:

Issue 11/38 Ambulance crews often not aware of a patient’s resuscitation status until arrival and depends on a valid DNAR form being present and visible. Issue 11/39 The PTS service do not always receive a DNAR form which causes anxiety to ambulance staff when trying to do the best for the patient. Issue 11/40 Unnecessary pressure to resuscitate if unsure of DNAR/living will status etc

The following suggested improvements were raised in relation to DNAR:

Suggested Standardised DNAR forms throughout the region and not individual Improvement 11/ 6 to PCTs.

- 242 -

Training and Education

ECPs receive Core Practice Development (CPD) training which includes pain ladders, care plans, GSF and LCP. Staff will also gain experience from other colleagues. Mandatory induction training for PTS staff includes moving and handling patients and pain control. Ambulance staff receive minimal training relating to the care of palliative and end of life care patients. Some staff may access hospice courses in their own time.

During the course of the Phase I investigations ambulance staff were asked to provide information relating to the training they would most benefit from and the responses included:

• Palliative Care and EOLC Training; recognising patients who need palliative care • Specialist Hospice Palliative Nurse training • Clear pathways for EOLC • Bereavement counselling • Pain relief and pain management alternatives • DNAR procedures, forms, recognition, completion • Communication Skills • Dementia and aggressive patients • Palliative Care resources available in the locality • Role of Macmillan Care Team • Dealing with relatives caring for and EOL / palliative patient • Medication for Palliative and EOLC patients

The following issues were raised in relation to Training & Education:

Issue 11/41 Junior staff lacks skills in handling patients and families in end of life care. Issue 11/42 Academic approach to vocation has led to less practical skills.

The following improvement was suggested in relation to Training & Education:

Suggested Hospital or Hospice placements in work time Improvement 11/7

Ambulance Service Case Study

The following account was provided by a qualified student ambulance paramedic (SAP) who attended a female patient in Sudbury, in the West of the county. This patient had widespread cancer (bone, breast, abdominal, pelvis, spinal column, lymph node) and was known to the Macmillan team. She was developing a UTI and needed admission for IV fluids and antibiotics.

The SAP organised a vehicle to transfer the patient to the hospital as an urgent admission. During the assessment while at the patient’s home the SAP considered direct admission to the hospice as she had been discharged from there one week previously. The SAP also contacted the patient’s GP who liaised with the hospice medical team. As there were no beds available in the hospice and the staff did not have access to the patient’s notes at that time, the GP requested that the patient be admitted to hospital. The SAP also contacted the patient’s Macmillan nurse who knew the patient well and was advised to contact the hospital bed manager to discover whether they would accept a referral from the SAP directly into EAU. This would mean that the patient could be admitted to an appropriate bed as she had a necrotic sacral sore and painful joint. EAU informed the SAP they were not expecting the patient and to ask the GP to make the referral directly. The SAP contacted the GP again and was informed that the patient should be sent to A&E to let them decide what to do with her.

- 243 -

As the patient had been nursed on an air mattress at home, the SAP was concerned that a potential waiting time of four hours on an A&E trolley would not help her sacral sore nor her general health. The SAP communicated progress to the family and assured them she would be in direct contact with A&E on arrival to determine whether the patient could be processed more quickly. This didn’t occur but the A&E staff did ensure she was nursed on a ripple mattress while in the department

The SAP reported that although communication with other HCPs could be improved, she praised the A&E staff for taking into consideration the patient's needs. They listened and took on board the SAP's clinical assessment.

The following issues are raised from this case study:

Issue 11/43 The hospice did not have access to the patient’s notes when the SAP contacted them, although the patient had been discharged one week previously. Issue 11/44 There were no hospice beds available. Issue 11/45 EAU wouldn't accept a referral from the SAP despite her clinical assessment that the patient should be admitted to an appropriate bed Issue 11/46 The GP wanted the patient to be taken to A&E to let them decide what to do with her and wouldn't make a direct referral to EAU. Issue 11/47 A patient requiring an appropriate mattress/bed was put on an A&E hospital trolley. Issue 11/48 Poor communication between HCPs. Issue 11/49 Time required by the SAP to liaise with other HCPs and complete the relevant handover documentation.

The following suggested improvements were raised from this case study:

Suggested Ambulance staff should be able to admit a known patient to the Improvement 11/8 hospice. Suggested Following assessment of the patient, ambulance staff should be able Improvement 11/9 admit directly to EAU without having to go through the GP or should be able to facilitate communication between the hospice, the Macmillan Nurse and EAU.

- 244 -

12 Voluntary Sector

Methodology

Information regarding the voluntary sector organisations was collected using the following methodologies:

• 1 1 Interviews • focus group interviews

12.1 Suffolk Cruse Bereavement Care

Suffolk Cruse is the major bereavement care charity in the county and was formed in April 2009. In Suffolk there are four branches that directly support the bereaved:

• Suffolk Coastal • North Suffolk and Great Yarmouth • Ipswich • West Suffolk

Two of the branches, Ipswich and West Suffolk, see bereaved people either in their own homes or in Cruse premises. The other two, Suffolk Coastal and North Suffolk and Great Yarmouth, provide bereavement support volunteers (BSVs) to see clients at home. Cruse offers a training course for potential volunteers in two branches each year. Across the county Cruse has 73 BSVs, 18 supervisors and 27 other volunteers.

Referrals

Self referral is encouraged; 70% of referrals come via General Practitioners. In 200910 Cruse handled 648 initial contacts, representing 13% of the deaths in the county (excluding Newmarket or Haverhill, but including Thetford). 431 went on to need onetoone visiting or to attend small group conversations.

Suffolk Cruse also runs groups to help children (in Ipswich) and “friendship groups” for those who want ongoing companionship.

Information gathered from an interview reported the following;

The biggest challenge facing Cruse is that a tremendous amount gets done on a skeleton budget. Past funding by joint commissioning has now been handed over to a different funding process and funds available to bid for have been reduced to £1500 from £7000. It is not easy to measure effective counselling and therefore it is hard to demonstrate effectiveness of the service to funders.

12.2 Crossroads Care

Crossroads Care Services are part of a network of local providers across England and Wales, each offering a service with a trained carer support worker visiting the home to assist with the caring responsibilities. Each local provider is an independent charity, which has its own funding streams and is therefore able to provide additional services according to funding and demand at a local level.

There are two local Crossroads Care organisations in Suffolk which include West Suffolk and South East and both are able to offer information in relation to how they support families caring for someone with palliative care needs or at the end stage of life.

- 245 -

Crossroads Care West Suffolk

Crossroads Care West Suffolk is a local charity based in Bury St Edmunds and has been supporting family carers since 1984. The organisation covers a large area that includes most of Forest Heath, all of St Edmundsbury, the north east of Babergh, which takes in Sudbury down to Stoke by Nayland and all of Mid Suffolk.

The aim of the service is to offer Carers a regular break at a time that suits them and to offer a reliable and consistent service. They strive to provide a high quality, flexible service to people from all age groups, disabilities or health problems, at any time of day or night and for any duration. Many of those receiving care have severe disabilities and therefore have complex care needs requiring consistency of care, and commitment, from our care staff. The service is tailored to meet individual needs and they support palliative and end of life care patients and families. The scheme is fortunate that many of their staff have been with them for many years and it was reported that the commitment from the staff has been critical to the success of the service. Recruitment to the service follows a comprehensive selection process to ensure that staff are highly trained and experienced. West Suffolk Crossroads Care currently employs 40 Carer Support Workers who look after over 400 people of all ages and disabilities and who may be at the end of life stage, so their carers can have a break for a while.

Crossroads Care South East Suffolk

Crossroads Care South East Suffolk provides respite care whether it is in the home or in the community to enable the Family Carer to have a break from their caring role. As part of the respite care service they offer personal care, administration of medication (client specific), gastrostomy (peg feeding), Epipen etc.

The organisation also provides four clubs: Saturday Club – For children aged between 512 years affected by Autism. Sunday Club – For children aged between 512 years for children with disabilities. Bowling Club – For children aged between 918 years for children with disabilities. Wednesday – For young adults aged 18 and over with disabilities.

In relation to end of life care services the organisation offers a fast track service for people diagnosed with a terminal illness where the service provision would be set up within a week to two week time frame or as promptly as required. The services are funded by Suffolk County Council except for the end of life fast track service which is funded through donations and fund raising.

12.3 Suffolk Family Carers Suffolk Family Carers was started in 1988 to help raise awareness of family carers, their issues and their needs. They are members of the Princess Royal Trust Centre Network, and work closely with Carers UK. The organisation runs a large number of smaller projects that offer family carers a range of highquality services to help them look after their own health and wellbeing, and better cope in their caring role. The service supports family carers who care for family and friends who have a wide range of needs and disabilities. Many of these people will have long term conditions and will be seen as being palliative care patients or at the end stage of their lives.

- 246 -

Major projects include:

• Family Carers information Centre • Community support team • Suffolk Young Carers support team • Mental Health support team

Many projects are run from the Information and Support Centre in Claydon near Ipswich, recognised as a focal point for family carers and professionals in Suffolk. Staff is also based in three acute hospitals in Suffolk, and in Outreach Link Centres in rural community buildings, recognising the importance of providing information and services to people who cannot travel to Claydon. The organisation works in close partnership with the local authority, PCTs, NHS Trusts, GPs, private and voluntary organisations and strategic partnerships. The Family Carers Information and Support Centre in Claydon, nr Ipswich, offers information and support to family carers and professionals in Suffolk and is open Monday to Thursday from 9am to 4pm, and on Friday from 10am to 4pm.

Suffolk Family Carers Hospital Team

Working to help family carers have a better experience of hospital stays, the hospital team operates in Suffolk’s acute hospitals and works closely with ward staff, social care staff, and in hospital forums to make sure that family carers are supported during their hospital stay. They offer an advocacy service where required and in more complex situations. By providing support and information to family carers during times of increased pressure and change, it is hoped that they will be enabled to continue in their caring role should they wish to, and to make informed choices that will enable them to maintain their own health and wellbeing.

The team aim to support family carers when they or the person they care for are admitted to hospital, and for a period of time once discharged from hospital. They will refer people on to other projects and services if it is necessary or appropriate to do so.

Bereavement support and life after caring

The organisation will offer support to family carers during the following 2 years after bereavement, and may signpost them to their ‘Bereavement and Family Carers’ booklet that gives useful advice and contact details. They usually send out a letter of condolence to the family they have been supporting.

Training co-coordinator

There is a trainer working across the two Suffolk hospitals who provides training sessions and raising awareness sessions for all staff in each hospital. This role was reported to be a major influence regarding support to family carers in the hospital system, and links closely with the carer support worker role in the hospitals also. The trainer also links closely with social workers and discharge planning staff at all stages of the patients stay in hospital.

12.4 Age UK

Age Concern and Help the Aged joined forces to become Age UK and provide a wide range of services for a large group of people in later life. Age UK supports and assists a network of over 330 local Age UK and Age Concern factions, which between them provide an extensive network throughout England. The Age UK group helps over 5 million people every year. Age UK in Suffolk is an independent charity and together it works in a strong partnership to promote actively the well being of people in later life through national and local campaigns, through influencing the media, by

- 247 -

fundraising and through our range of products and services. Local Age UK and Age Concern provide vital direct services to people in later life, working in partnership with the national organisation.

These local services include:

• information, • advice and advocacy services; • day centres and lunch clubs; • home help and 'handyperson' schemes; • and • IT • Training.

Although these services are not specifically provided for people in the palliative and end of life stage, it may be that some of those people accessing these services may be at this stage in their life.

Information Service

The information service provides accurate, local information via help desks around Suffolk. Among the information resources are:

• Legal Advice Sessions – free basic legal advice from local solicitors • Age Concern Information Guides and Fact sheets on a wide range of subjects

There is a fast track system in place to support older people with terminal care to ensure they have maximum available financially to them. Staff attend training events in end of life care e.g. working with funeral directors. They will signpost people to CRUSE if appropriate. Independent Advocacy Service This is a free confidential service which offers focussed and time limited advocacy support for people aged 55 or over living in Suffolk and includes older people with Physical and Sensory disabilities, Dementia, Learning Disabilities or Mental health problems. The advocacy service can help by: • Supporting people to speak up and have their wishes heard • Providing information to enable people to make informed choices • Assisting individuals in meetings with professionals • Helping people with Dementia play a real part in planning their future • Assisting people who may be vulnerable to abuse or neglect Lunch Clubs and Social Clubs The organisation has a large involvement with the Older Peoples Partnership Board in Suffolk, which is a multiagency group including professionals and the public. The group provide news letters, useful information and the opportunity for older people to take part in public involvement. Volunteers Service Volunteers working in the befriending schemes provide friendship and support for older people who feel lonely or isolated. They visit people in their own homes, normally once a week for around an hour. Care is taken to match the interests of both volunteer and client as far as possible. The scheme is a free service, providing friendship to older people. There is also a telephone

- 248 -

befriending scheme in operation, where volunteers will ring each week where a personal visit is not possible or a telephone call is preferred.

12.7 Sue Ryder

The service in Suffolk provides long term care, a day service, carers groups, and a respite bed which is all based at the Sue Ryder Home in Chantry Park, Ipswich. Services are provided for people with long term conditions including brain injury, stroke, and multiple sclerosis and who are in general under 65. Most referrals come from Suffolk and through referrals from GP`s, social workers, hospital discharge teams.

The organisation works proactively with the end of life tools – Gold Standards Framework and the Liverpool Care Pathway, although the percentage of patients who are palliative and end of life stage is annually comparatively low. Where it is the choice of the patient to die at the home, practitioners work proactively to enable this to happen by linking with key health professionals. It was reported that practitioners would benefit from more end of life training and would like to see more links to local Hospice at Home services.

12.9 Red Cross

British Red Cross tackles major health issues and offers social care and support to vulnerable people, in the UK and overseas. It provides valuable shortterm support to vulnerable people, including lending medical equipment and care at home. Many elderly socially isolated or otherwise vulnerable people around the world need support to change their lives for the better. Volunteers are able to provide extra support and care at home. They may be able to provide shortterm loans of medical equipment to people in need, including wheelchairs. Their therapeutic care volunteers help relax people in stressful situations and in desperate need of support.

Home from Hospital

The Red Cross in Suffolk also provide a Home from Hospital Service that offers support, encouragement and practical help to patients leaving hospital. Volunteers offer support post discharge and up to 46 weeks after. They work closely with professionals assisting and preventing readmission to hospital. The service aims to compliment all the other available community support services. Types of support may include

• Keeping the patient company and relieving isolation • Ensuring they are safe and warm • Shopping, collecting prescriptions and pensions • Ensuring they have food and assists with meal preparations

The Red Cross helps thousands of people following a short stay in hospital and prevents unnecessary hospital admissions by providing extra support and care at home. The support offered by volunteers can smooth the process of settling back into a normal routine and enable people to regain their confidence and independence. The service has volunteers from around Suffolk who offer support to patients and their families and includes:

• rebuilding confidence • collecting prescriptions • offering companionship • assistance with shopping.

- 249 -

12.10 Optua

Optua provides a wide range of services for disabled people across East Anglia and represents disabled people on a wide range of voluntary and statutory committees, involving the planning, monitoring and provision of services for disabled people across Suffolk. Optua works to provide disabled people with the opportunities to play an active part in the community and to help them recognise their equal right to take part in all aspects of everyday life. The organisation is run by disabled people for disabled people and represents the interests of all disabled people, whatever their disability. In addition they provide community based support for people with acquired brain injury across England and Wales. Specific services provided include:

• Access Groups • Advice and Advocacy • Leisure • Community Transport • Volunteer Centre Mid Suffolk • Care • Community Brain Injury Services (Optua UK) • Homecare • Training

The following issues were raised by the voluntary sector organisations as barriers to effective palliative and end of life care in the community and have been themed as follows:

Training

Issue no 12.0/1 "impatient with the wife and spoke abruptly of husband’s imminent death in his presence" Issue no 12.0/2 Through the pilot program, I would like to know whether there is likely to be any guidance for professionals on ways to broach death and dying with (social care) clients. Issue no 12.0/3 More awareness of carers and their needs with training at all levels of staffing Issue no 12.0/4 Training cannot always be accessed easily Issue no 12.0/5 Can be a long time frame to access training Issue no 12.0/6 In hospital the patients is often not identified in terminal stages of life, especially dementia and stroke.

Service Issues

Issue no 12.0/7 Support needed from a district nurse or hospice at home, is if a syringe driver needs to be in situ. Issue no 12.0/8 Lack of experience of staff due to limited referrals for palliative and end of life patients and as such is inexperienced in this role. Volunteers may feel inadequately prepared for clients of this nature and lack the knowledge of relative palliative care packages and support. Issue no 12.0/9 Lack of secure funding Issue no 12.0/10 Donations are limited Issue no 12.0/11 There is a lack of clarity around the services available including bereavement services

- 250 -

Issue no 12.0/12 Not all area sections have offices therefore equity of bereavement services in Suffolk is an issue and having no physical presence in an area can be a limitation. Issue no 12.0/13 The organization is not known by enough people including GP`s. Issue no 12.0/14 There is insufficient money to get more Bereavement Visitors or to mount a publicity campaign, or to provide offices for all four branches (Ipswich and West Suffolk do have some office space). Issue no 12.0/15 There is no office space for two of our branches.

Access to services

Issue no 12.0/16 Ability to identify very vulnerable people near end of life who are living in their own homes. Issue no 12.0/17 Ability to have just one number to call to ‘upgrade’ support fast. Issue no 12.0/18 Customer First (SCC’s first point of access) is not particularly helpful for people who need a quick response – callers complain that they have to wait for someone to call back, this doesn’t happen and they find themselves in a circle of phoning, receiving the callback promise, waiting and phoning again; this may go on for weeks. Issue no 12.0/19 Staff availability and cover to back fill. Issue no 12.0/20 There are no dropin centre’s for the bereaved, therefore there is no support to those who are on the waiting list for support once bereaved.

Psychological Support

Issue no 12.0/21 More services for carers if funds were available ie bereavement service, preparation for the future etc. Issue no 12.0/22 When carer’s person is in hospital they are often in a crisis and need support psychological support

Family & Carers Support

Issue no 12.0/23 Although many people would prefer to die at home, they are afraid of being alone to manage their illness and not being sure of support and companionship and good pain relief. Issue no 12.0/24 Will the resources (appropriate staff and money) be quickly available to support their last few days or weeks and enable dignity at the end of life? Issue no 12.0/25 Personalisation of social care and personal budgets to ensure people have appropriate support to manage their end of life issues, particularly if a person deteriorates quickly Issue no 12.0/26 Although many people would prefer to die at home, they are afraid of being alone to manage their illness and not being sure of support and companionship and good pain relief. Issue no 12.0/27 Delays in inquests and results, add to the families/carers anxieties Issue no 12.0/28 The carers are unprepared; do not have the support, information and backup. Issue no 12.0/29 Perception newly registered carers need support. It is often the long term carers who need the support.

- 251 -

Choice & Appropriate Environment and Care

Issue no 12.0/30 Feel able to met request for where to die at present but not many deaths to deal with in the year at present. Issue no 12.0/31 Do not often get involved in GSF meetings at surgeries if family carer asks the team. It is often the families who are not identified by the GSF meetings who often need more support. Sometimes not identified someone is dying – complex morbidity with no one to coordinate care. Issue no 12.0/32 No key one person pulling it all together. Issue no 12.0/33 With a person who has a malignancy cancer, the Macmillan nurse is often identified as the Key Worker, however a key worker is not always identified with all end of life patients. Issue no 12.0/34 Lack of social care package in the community to support discharge

Out of Hours

Issue no 12.0/35 Terminal conditions may be masked with other common symptoms not associated with terminal illness, but ordinary people (especially under stress) are reporting simply what they can see and are heavily reliant on the OOH to ‘look behind’ the symptoms reported and advise and support. Issue no 12.0/36 Lack of efficient OOHs services

Issue no 12.0/37 Difficult for carers to know whether to call OOHs or 999

Quality of Care

Issue no 12.0/38 Few deaths, so difficult for staff to be specialised eg training in syringe driver/ verification of death not viable due to low numbers of deaths and staff maintaining competence. Issue no 12.0/39 Links to GSF and LCP across practice Issue no 12.0/40 Increased staff training and signup to skills for care/Gold standard Framework etc

The following recommendations were suggested:

Suggested recommendations More awareness of carers by professionals 12.0/1 Suggested recommendations Better links with discharge team and need for workers to 12.0/2 be based in teams/wards NOT separate and far away from social care team Suggested recommendations 12.0/3 Better preparation for carers before they take the patient home and what services are available in the community to support them. Suggested recommendations More staff able to work rurally 12.0/4 Suggested recommendations 24/7 support available at all levels of service. 12.0/5 Suggested recommendation More counselling and therapeutic services available for 12.0/6 carers

- 252 -

Suggested recommendation Bereavement advise and support services available 12.0/7 Suggested recommendation More/improved support for carers in terms of 12.0/8 counselling/therapeutic services. Suggested recommendation Better training for staff to enable more of a counselling 12.0/9 support for the family carer Suggested recommendation “Encourage CRUSE to take a lead in the process” 12.0/10 Suggested recommendation There needs to be some kind of sign posting to the 12.0/11 organization. Suggested recommendation Increased resources to enable support to other harder to 12.0/12 reach groups. Suggested recommendation A telephone call quickly is known to be effective 12.0/13 Suggested recommendation Increased staff training and signup to skills for care/Gold 12.0/14 standard Framework etc Suggested recommendation Links to GSF and LCP across practice 12.0/15 Suggested recommendation Respite for carers to get a break 12.0/16 Suggested recommendation More services for carers if funds were available ie 12.0/17 bereavement service, preparation for the future etc. Suggested recommendation Many experiences of patients going home and returning to 12.0/18 hospital within a week and die in hospital. Often Suffolk Carers are the only agency that will follow up the carers and ask how they are getting on. This could be improved by the professional listening to the families and not focus on just getting the patient out of hospital Suggested recommendation Carers are less likely to challenge/ ask for help 12.0/19 Suggested recommendation Carers not identified; GP’s do not keep Registers of carers 12.0/20 Suggested recommendation Older people want to treated with respect but, most 12.0/21 importantly, want professionals to be ‘caringly’ honest when talking about their prognosis which would help in their decision making. Suggested recommendation More funds to continue and be more proactive with 12.0/22 promotion Suggested recommendation Better communication throughout the hospital – more 12.0/23 shared info Suggested recommendation More information for carers. Preparation for future role of 12.0/24 caring and medication and diagnosis impact Suggested recommendation Improved pall and end of life care training 12.0/25 Suggested recommendation More awareness of carers and their needs with training at 12.0/26 all levels of staffing Suggested recommendation The ability to support carers when patient chooses to die 12.0/27 at home – 24/7 support available Suggested recommendation More inclusion for carers throughout whole pathway of 12.0/28 care

- 253 -

Suggested recommendation Better communication across agencies 12.0/29 Suggested recommendation Carers support integral to pathway at all stages 12.0/30 Suggested recommendation Better communication 12.0/31 Suggested recommendation More training for staff and funds to allow staff to attend – 12.0/32 back fill. Suggested recommendation Staff could benefit from advanced Communication skills 12.0/33 training which would enhance the quality of EOL care. Suggested recommendation Improved pall and end of life care training 12.0/34 Suggested recommendation The ability to support carers when patient chooses to die 12.0/35 at home – 24/7 support available Suggested recommendation Carer support available 24/7 helpline 12.0/36 Suggested recommendation 24/7 more breadth to service 12.0/37

- 254 -

13. Out of Hours

13.1 Harmoni

Information regarding the out of hours GP service provided by Harmoni was obtained through interviews with the following:

• GP clinical lead • Nurse lead • Assistant General Manager

On 1st April 2010 the responsibility for the Out of Hours doctors and dental service passed to Harmoni Healthcare. The contract is for 5 years to cover all of Suffolk except Waveney and the area covered by the Bildeston GP practice, which runs its own out of hours service. Harmoni has five Suffolk GPs on the Board and the clinical lead post for the service in the County is a job share between two local GPs. The NHS Suffolk OOH Service operates between 6:30pm and 8:00am Monday to Friday, and all day at weekends and bank holidays. The 10 bases are situated as below

Table 1: OOH Bases

Bases Out of Hours Period

Aldeburgh Monday to Friday

Bury St Edmunds 18:30hrs until 08:00hrs Hours – Aldeburgh 19.0012mn Brandon/Lakenheath Mildenhall – 18.3022.00

Stowmarket – 19.0023.00

Eye Newmarket – 19.00 22.00

Mildenhall Haverhill – 19.3023.00

Sudbury – 18.30 12mn Ipswich – 18.3008.30

Wickham Market – only Sat & Sun 10.0015.00

Haverhill

Saturday, Sunday Ipswich Bank holidays and other designated holiday Newmarket periods

08:00hrs until 08:00hrs Stowmarket

Sudbury

Wickham Market

Some bases will only be operated as a need emerges e.g. a patient would be asked to attend a base at a designated time to meet an appropriate member of the out of hour’s service. Access to the out of hour’s service is by using a publicised phone number and 98 % of all calls are from members of the public. There is a ‘triage’ system where calls are assessed by experienced clinicians to determine appropriate action including provision of advice, access to an experienced

- 255 -

clinician in a base or home visit or an emergency need via the ambulance service. The assessment process takes into account what is reasonable for individual circumstances e.g. mobility and carer constraints. The present OOH services are attempting to raise the number of doctors who are UK trained and who are more familiar with the practice of local provision of palliative and end of life care. All the staff employed by Harmoni has access to training in palliative and end of life care.

For the patients that are palliative and /or end of life there is an agreed system which is sent via a special note form from the GP practice. The special notes are sent to the OOH service by fax or email. One member of staff reported

“Information is not often received from other services regarding this group of patients.” All GP practices have access to put Special Patient Notes onto the system but it was noted that there is under utilisation of this facility and it was reported that the GP practices fax over the details which may prove difficult to read and do not contain sufficient information. More information is needed for palliative care patients. Special patient notes tend to be used for other things and not specifically for palliative care. Additionally there is no formal record of PPC identified; often clinicians avoid approaching conversations with patients and their families about dying. Appropriate utilisation and recording of the PPC is reliant on each individual GP. Harmoni adds and flags up palliative and end of life patients when they receive information.

Formal reports of all patients who are seen in the service are sent back to all practices the next day, if the patient has received more than one visit the information is combined into one report. If there is a follow up required, that requires same day action by the patients own practice, the information and request is faxed by the Doctor of the OOH service. st From 1 January 2005, all providers of outofhours (OOH) services have been required to comply with the national OOH Quality Requirements 16 The staff employed within the service includes: Minor illness nurses Nurse Practitioners Advanced Nurse Practitioners General Practitioners

Each shift is covered by 3 nurses and 16 GPs with cover over Sat/Sun/Bank holidays provided by there are 20 nurse shifts and 60 GP shifts to cover each day.

The GP clinical lead stated the service has good direct links with District Nursing Service and the coordinators of the OOH service take responsibility for this link (every shift has a coordinator). If there is a need to support with the setting up technology e.g. syringe drivers access to the D/N availability is reported as satisfactory and also the hospice at home team. Information is passed to the District Nurse same night as patient contact. If there is a need for DN during day i.e.: follow up for DN it will be recorded in the notes and sent electronically to GP at 08.00 or 08.40.If it is considered urgent it will be also followed up with a telephone call to the GP. Another challenge for the OOH service was that staff are often poor at planning for the weekend care, e.g. prescriptions that are left on site for care.

“Often these are syringe driver prescriptions and there is difficulty to get the drugs.”

It was also reported that the Rapid Response Team “are extremely valuable”

During interviews it was reported many requests for consultations in are for pain relief; the issues are related to the fact that the family/carer do not know what to do next. It was noted that ” it appears to be a very reactive pathway with often no real guidance to follow.”

16 DH July 2006 National Quality Requirements in the Delivery of OutofHours Services - 256 -

During the interviews the following issues were raised

Education Issue Number 13/1 Raise awareness of proactive planning by GPs Issue Number 13/2 Unfamiliarity of technology Issue Number 13/3 Certain staff lacks the skills to have conversations about death and dying.

Coordination Issue Number 13/4 Only East Suffolk have DN service via Rapid Response. Issue Number 13/5 There is a gap in access to community palliative specialist. Issue Number 13/6 Due to the nature of our service which we are contracted to do, we would be unable to make any significant changes to time spent dealing with palliative care patients without jeopardising our time targets. Issue Number 13/7 End of life pathway appears reactive Issue Number 13/8 Not enough time is considered for palliative and end of life issues in the requirement to achieve present targets

Issue Number 13/9 Local GPs are often poor for planning for weekend care Issue Number 13/10 Family and carers often do not know what to do next.

Palliative care Issue Number 13/11 There is no formal recording of PPC

Information Issue Number 13/12 One of the biggest challenges is not having enough patient information on hand when a call comes in. Issue Number 13/13 There is limitation in information sharing

Issue Number 13/14 The OOH service do not receive enough comprehensive information from all parties involved with the patient.

Issue Number 13/15 Sometimes the information is not so good. Issue Number 13/16 Present reporting system for special patients under used Issue Number 13/17 There is sometimes information overload for patient and carers

Medication Issue Number 13/18 Repetitive prescribing

Issue Number 13/19 Control drug licence limits access to certain drugs Issue Number 13/20 Carers often have to leave their loved ones to collect medication at the weekends Issue Number 13/21 Not always having enough information

Issue Number 13/22 Information is not often received from other services regarding this group of patients Issue Number 13/23 Often these are syringe driver prescriptions and there is difficulty to get the drugs. Issue Number 13/24 It appears to be a very reactive pathway with often no real guidance to follow

- 257 -

Recommendations

Coordination Suggested One organisation to look after all Palliative Care Patients. Improvement 13/1 Suggested Develop an equitable end of life service across the county Improvement 13/2 Suggested Mirror services from both sides of country. Improvement 13/3 Suggested Prioritise palliative care patients Improvement 13/4 Suggested Develop a real single point of access Improvement 13/5

Information Suggested Standardised process for information sharing of palliative and end of life Improvement 13/6 patients Medication

Suggested There is a need to develop a process to ensure medication is proactively Improvement 13/7 prescribed in hours

Suggested Develop a central store for urgent medication e.g. at hospice Improvement 13/8

Suggested Patient held records would be very helpful to provide consistency of Improvement 13/9 care.

Suggested Both day and night services should deal with patients they receive so no Improvement 13/10 handover of patients should be required

Suggested Complete drug charts in hours Improvement 13/11

Suggested Could be linked into SystemOne to access patient details Improvement 13/12

- 258 -

13.2 Bildeston Health Centre

Information regarding the out of hours GP service provided by Bildeston Health Centre was obtained by interviewing the Senior GP partner. Bildeston provides OOH service for the whole of their 6,874 population. Patients can access the service by telephoning the health centre. The service provided by the 4 GP partners commences at 6 pm until 8 15 am the following day on Monday to Friday and 24 hours over weekends and Bank holidays. The service has good links with the District and Rapid response service, hand over works well between the partners who update each other during the day of any changes with the patients. The GPs have a portable IT system and all palliative patients’ notes are flagged. The GP stated the service works well because the patient will be cared for by one of the 4 partners. There were no issues or recommendations for improvement.

- 259 -

14. High level issues and recommendations

Here we present the high level issues that bring together all the summary issues from the different parts of the report. We present the issues under the same headings used for the themed recommendations in order to facilitate focusing on the part of the system that needs to be improved.

KEY:

7 Patients and Family Carers

8 Hospital Care 8.1 Ipswich Hospital Trust (IHT) 8.2 West Suffolk Hospital Trust (WSH) 8.3 Suffolk Mental Health Partnership (SMHP)

9 Specialist Palliative Care 9.1 St Elizabeths Hospice 9.2 St Nicholas Hospice

10 Community Services 10.1 General Practitioners 10.2 Community Nursing 10.2.1 Marie Curie Nursing Services 10.2.2 Macmillan Nurses 10.2.3 Community Matrons 10.2.4 Heart Failure Specialist Nursing Team 10.2.5 COPD 10.2.6 Neurology 10.2.7 SCRT 10.2.8 District Nurses 10.2.10 Equipment Service 10.2.11 TCT 10.2.12 RRT/RRAP 10.3 Adult and Community Services 10.4 Community Hospitals 10.5 Care Homes 10.6 Prisons

11 Ambulance Services

12 Voluntary Sector : Anglian Care Crossroads Care Suffolk Family Carers Age UK Cruse Sue Ryder Red Cross

13 Out of Hours 13.1 Harmoni 13.2 Bildeston

- 260 -

Issues Theme Issues High Level Issues Ref. Care in the Provision of care within the community is undertaken by a variety of organisations such as the NHS, Social services, Community and organisations from the voluntary and private sector. In some organisations, different teams provide different aspects of care.

Issue 1 There is inequity of the service in the West (10.2.4/9; 10.2.8/89; 9.1/34; 7/81; 8.1/114; 13/4; of the county 10.4/18; 10.1/50; 10.3/47; 9.2/28; 10.2.1/14; 10.2.12/4; 10.2.1/10) Issue 2 Lack of qualified nursing staff overnight (10.2.12/6; 8.2/80; 10.2.8/60; 10.2.8/86; 10.2.8/53; 10.2.6/15; 10.2.12/17; 10.2.8/50; 10.1/41; 7/14; 10.1/42; 10.2.12/8; 7/39; 10.1/44; 10.2.12/8; 7/39; 10.1/44; 9.2/3; 10.2.8/22; 9.2/5;9.2/34; 10.3/117; 7/5) Issue 3 Lack of 24 / 7 Care and services in the (10.4/36; 7/41; 10.3/99; 10.2.1/23; 10.2.4/4; 11/7; community 10.2.6/14; 10.2.8/61; 10.1/24; 9.2/37; 10.2.6/12; 10.2.5/7; 10.1/37; 10.1/38; 10.1/26; 10.3/18; 10.3/98) Issue 4 Shortage of staff in community services (10.2.2/4; 11/34; 10.3/113; 11/8; 10.2.12/14; 10.1/35; 10.3/120; 10.2.11/13; 10.2.8/82; 10.2.8/71; 9.1/9; 10.2.3/4; 10.2.12/16; 10.2.8/6; 10.1/21; 10.1/51; 13/8; 12.0/19; 10.2.12/10; 10.2.3/2; 10.3/39; 10.3/26; 8.2/25; 10.2.8/2; 10.2.8/3; 10.2.8/4; 10.2.8/5; 10.2.8/27; 10.3/42; 10.4/4; 10.2.8/39; 7/19; 7/20) Issue 5 Lack of identified key worker (10.3/90; 7/115; 10.3/91; 10.2.11/7; 10.1/36; 7/105; 7/116; 7/113) Issue 6 Lack of community services to support the (10.1/5; 10.2.8/32; 7/32; 10.2.8/88; 7/9; 10.3/66; care of patients at home 12.0/7; 7/100; 7/22; 7/23) Issue 7 Lack of choice (10.3/82; 9.1/7; 8.2/117; 10.1/52; 10.3/86) Issue 9 Lack of day care services (7/70) Issue 10 Lack of support for relatives / health care (7/771; 10.4/23) support workers to administer medication

- 261 -

Issue 11 GPs not always prepared to do pre-emptive (10.2.8/69; 10.2.8/70; 10.1/12) prescribing adequately Issue 13 Lack of care / services in the community to (8.2/19; 8.2/33; 8.2/103; 10.3/103; 9.2/4) support LTC or dementia patients, lack of an identified key worker Issue 14 Care provision is not always available and (8.1/13,10.1/30,8.1/67,10.2.8/37,10.2.7/19,8.1/85,1 can be difficult to provide particularly in 0.2.2/2,10.3/84,10.2.11/4,8.2/81,10.2.12/7,10.2.1/9, rural areas 9.2/23,10.2.8/25,8.2/118,8.1/68,8.2/27,8.2/75,9.1/4 1,8.2/26,10.3/49, Issue 15 Lack of personal continuing services / 8.1/116,9.2/10,10.2.3/5,'11/46,10.1/34,10.1/2,10.2.6 support by local GP practice. /22,8.1/137,10.2.7/23,10.2.8/79,8.1/138,) Issue 17 Lack of palliative care provision, lack of (8.1/2,8.1/73,8.1/75, (8.1/1) available beds in Nursing / Residential Homes Issue 18 It is difficult to care for people living alone (8.1/8,10.3/57)

- 262 -

Issue 19 Lack of palliative care community services, (8.2/102, palliative care in the community is variable '7/18,'13/2,8.2/11,'13/6,'7/82,10.2.8/1,8.1/115,8.2/1 23,10.2.3/8,10.2.7/2,8.1/27,9.2/27,10.2.8/76,10.2.8/ 77,12.0/16, (7/119; 9.2/46)

Issue 21 Inability / under utilisation of EOLC Tools (10.2.3/11,9.2/25,10.2.3/3,10.2.8/74,8.3/10,10.2.8/7 5,10.1/27,8.2/31,8.2/32,'7/57)(10.3/24) Issue 22 MDT approach to GSF (12.0/31, 10.2.8/21,10.2.8/11,12.0/39, 10.5/24)

Issue 23 Information from GSF meetings not (10.2.5/15,10.2.7/18,10.2.5/18) communicated; GSF not undertaken properly Issue 25 Under utilisation of the LCP (8.1/59,8.1/61) Issue 26 There is a service gap for palliative care (8.1/74) patients who are not at end of life Issue 27 There is a lack of a community In reach (8.1/3) Issue 28 Patients will often have an acute episode (10.2.7/12) before receiving care Issue 29 Limited opportunity for IHT patients to (8.1/122) access cancer rehabilitation service -reliant on community teams / hospice to provide this. Issue 30 Lack of advice available for patients who (10.2.6/19) are self - funders Issue 31 Migrant workers will not receive (10.2.7/10,10.2.7/11) mainstream care services Issue 32 Lack of funding for an interpreter (10.2.2/6) Issue 33 No support for Mental Health patients (10.2.8/81) Issue 34 Financial constraints impacting care and (10.3/44,12.0/10,10.2.5/8,10.3/35,12.0/14,10.3/19,1 service provision 0.3/22)

- 263 -

Continuity and Sometimes, within organisations we have different teams that provide different aspects of care. Different coordination of care organisations, teams and individuals within the teams need to understand “who is doing what”, and “when”, and services understand the role and expertise of other professionals, ways of recording and communicating outcomes and above all adherence to standards of care. The issues below highlight that although care in most cases is provided successfully there are areas for improvements. Issue 35 Lack of acknowledged care pathway (8.1/48, 9.1/18,9.1/25,10.2.1/15,10.2.1/17,13/24,8.1/105,8.1 /6,9.1/40,'13/7) Issue 36 Lack of handover between professionals / (8.1/49,10.2.1/2,'11/30,8.2/57,8.2/74,10.2.1/5,10.2. services 1/6,'11/49,8.1/30,8.1/106) Issue 37 Lack of continuity of care (8.1/55,9.2/30,9.2/31,10.3/36,10.2.12/12,10.2.3/6,9. 1/29,10.2.12/11,10.1/7,10.2.8/14,10.2.8/23, 9.2/40,10.2.1/21) Issue 38 Lack of Advance Care Planning (10.2.4/14; 8.1/145; 8.1/95; 7/89; 9.2/49; 9.2/1; 13/18 ; 13/23; 10.1/32; 10.1/45; 7/88; 10.2.8/83; 8.2/51) Issue 39 Specialist Palliative care teams can't refer (9.1/43) directly for Marie Curie Issue 40 Lack of co-ordination between (8.1/96,'7/104,10.2.1/18,10.2.1/20,10.3/104,8.2/129 professionals and organisations ,8.3/2,12.0/27,10.3/17,8.1/97,8.2/39,8.1/98,10.2.8/9 0,10.1/10,10.2.12/15,10.2.8/65,10.1/9,8.3/17,10.2.8 /91)(10.2.1/29;(10.2.7/3; 12.0/32; 12.0/33)

Issue 41 Lack of standardised documentation (10.2.1/7,10.2.1/22,10.2.12/13,10.2/4,10.2.3/9) Issue 42 Access to primary care services 10.2.7/1) Issue 43 Limited services and access palliative care (10.2.7/4; 9.1/2; 10.2.7/17; 10.2.7/8; 10.2.7/15; for homeless people, lack of understanding 10.6/2; 10.6/1) of needs of marginalised groups Issue 44 There is a lack of local knowledge of (8.2/98,9.1/24,8.2/101,8.2/99) available services Issue 45 There are gaps in care provision (8.2/99,9.1/39,9.2/6,'7/1,9.2/17,9.2/29) Issue 46 Lack of pro-active planning of care and (9.2/50, 13/19,'13/9,'7/87,12.0/35,'7/64,'13/1) services

- 264 -

Issue 47 Limited / Lack of access to information for (11/5,10.1/1,10.5/22,10.1/11,8.3/3,8.3/13) professionals. Communication and To provide high quality care in the community for palliative care patients, different professionals and organisations information sharing need to communicate and share appropriate information with each other. The use of GSF and LCP has been between Community described by many as requiring to improve this process and the following areas were raised as requiring additional Professionals development to prevent additional barriers.

Issue 48 Lack of information sharing between (8.1/109,10.2.1/8,10.5/23,10.3/92,10.3/93,10.3/95,1 personnel and organisations 0.3/96,10.2.8/19,10.2.8/55)

Issue 49 Not all notes incorporate specific palliative (10.2.3/7,10.2.2/7,9.1/37) care information Issue 50 There is a lack of information about other ('11/29) services and agencies available Issue 51 There is a lack of information relating to (11/33,10.3/31,10.3/51)(8.1/19) accessing community nursing teams Issue 52 Lack of information provided from OOH's (10.3/102,'13/16) services Issue 53 Lack of MDT communication (10.2.8/10,10.2.8/11,'7/106,'7/107,10.2.8/18,10.2.8/ 12,10.2.8/38) OOH's Services Care out of hours is just as important in providing a cohesive and effective level of care for palliative care patients and their families as that provided within the working week.. Provision and handover of information between the day teams and OOH is critical in providing effective care to patients. The following areas were highlighted as needing improvement: Issue 54 There is limited service out of hours. (8.2/23; 8.2/28; 12.0/36; 10.2.1/28; 10.3/30; 10.2.6/24; 11/2; 8.2/29; 8.2/100) Issue 55 Lack of continuity OOH's (8.2/104; 10.5/25; 10.2.1/25; 8.3/9; 10.2.8/57; 8.3/4) Issue 56 Length of response time from OOH’s to (10.2.1/26) verify the patients death.

- 265 -

Issue 57 OOH staff have a lack of local knowledge of (10.2.6/16) the patient Issue 58 Lengthy process to access a GP OOH's (10.2.6/23) Issue 59 Out of hours service lacks local knowledge (8.2/10; 9.2/36) of access to community services Issue 60 There is a lack of support available to (9.1/44; 10.2.5/11; 10.2.8/52; 10.2.6/26; 9.1/46; patient and carers out of hours 9.1/53) Issue 61 Limited information sharing OOH's (10.2.7/24; 11/4; 11/26)(10.2.8/54) Issue 62 OOH’s doctors do not carry medication (10.2.8/58; 11/24; 10.2.8/51) Care Homes There are many care homes within Suffolk that are providing care for residents towards the end of their lives. Care homes provide a great service for people that for whatever reason cannot be at home. The planned introduction of end of life tools for example GSF, LCP and advance planning is seen by many as positive. Care homes in some areas have also had the opportunity to access education and training packages from local hospices. The following issues were highlighted :

Issue 63 Families are put under pressure to move (8.1/76; 8.1/125) patients to the interim care home placement Issue 64 Waiting for vacancies in Care Homes (8.1/77) Issue 65 Residential nursing homes do not have (8.2/1; 8.2/98) enough support or staff with skills to care for patients at the end of their lives Issue 66 Lack o f access and support from specialist (10.5/26; 9.2/8; 10.5/8; 9.1/33) palliative care professionals and services Issue 67 There is reluctance for nursing homes to (8.2/79; 9.1/13)(8.2/130; 8.2/84) receive patients back for end of life care Issue 68 Lack of communication and information (8.2/82; 8.2/83) provision when patients are discharged from hospital Issue 69 Challenges in the care home environment (11/20; 11/19; 10.5/4; 7/21) present difficulties

- 266 -

Issue 70 Lack of staffing resources to care for (10.5/10; 10.5/11; 10.5/12) patients approaching end of life Issue 71 Lack of hospice beds available / unable to (8.2/106,8.2/113,'11/44,10.2.4/10,9.2/7,10.2.11/16, admit when required 10.2.6/11,'7/97,10.1/3,'7/17,'7/4,'7/11,10.1/6,8.2/10 8,8.2/114,8.2/109,8.2/110,8.2/111,8.2/112,) Specialist Palliative Specialist Palliative Care services including hospices are without doubt very important in providing palliative care. In care provision in Suffolk the two hospices have provided palliative care for a great number of patients and their hospital and families. There is willingness of the hospice teams to be creative and diversify and the following issues highlight the community need to build further on integrated specialist palliative care services and make them available to all patients. Issue 72 Difficulties in admitting to the hospice for (9.1/32,10.3/100,9.1/35,10.2.2/3,9.2/18) respite / Lack of respite beds in the community Issue 73 There is a lack of community palliative care (8.1/7,8.3/7,8.1/117,10.2.2/1,9.1/3,10.4/20,10.1/46) resources Issue 74 The resources / competency within the (8.1/28,8.1/23,'13/5,8.2/47,8.1/25) Specialist Palliative Care Team is very specialised, there is a lack of resource within the team

Issue 75 Palliative care advice is available in relation (8.2/16) to symptom management but not in relation to patient choices Issue 76 The Specialist Palliative Care Team are (8.2/56) required to follow patients who have been discharged and who may have not understood the information relating to diagnosis and prognosis

Issue 77 There is a limited capacity for Hospice day (9.1/5) care provision Issue 78 Referrals made to the Macmillan CNS are (10.2.2/8,10.2.2/10)(10.2.2/9) often sparse and lack adequate detail and information.

- 267 -

Issue 79 Lack of community support from the (8.1/32,10.1/4) hospice service Issue 80 Hospice at home appear to be mainly for (10.5/13) cancer patients Issue 81 Lack of support from the Community (10.1/47,10.2.5/3) Macmillan Team Issue 82 The palliative phase may cover a period of (10.2.5/4)(10.2.5/6) months or years Issue 83 Lack of Specialist Palliative Care support in (7/29) the community Issue 84 There is a lack of specialist palliative team (8.2/91,8.2/8,8.2/133) (8.2/45) members with specific skills in LTC to support medication discharge decisions Issue 85 There is a need to revise the assessment (8.1/121) process of the hospice. Issue 86 Perception that priority is given to (8.2/46,8.2/107) community patients rather than patients in the hospital Issue 87 The hospice did not have access to the ('11/43) patient’s notes when the SAP contacted them, although the patient had been discharged one week previously.

Issue 88 Public perceptions of the Hospice may (10.1/14,10.1/15,10.1/40,10.1/49) affect choice Issue 89 The profile of palliative medicine / care (8.1/41,8.1/42,8.1/134,8.2/42,10.2.1/13,10.2.8/78,1 within the hospital is low 0.2.3/10,8.2/61,8.1/4,9.1/45,9.1/47,10.2.12/8,9.1/26 ,10.5/19,10.5/20,10.5/18,10.2.8/56,10.5/21,'13/18,'1 1/22,9.2/48,'13/19,'13/20,10.2.8/42

- 268 -

Arranging Health Care Home care is provided by a variety of organisations. Arranging packages of care for patients in the community relies Packages on well designed processes, good coordination and communication among the various providers. Patients do receive services at home meaning that packages are successfully arranged but, as always, processes could improve further. Below we highlight some issues that will help us achieve this. Issue 90 Lack of available health care packages; (10.4/19; 10.4/19; 7/24; 7/108; 7/112; 8.3/6; difficult to set up, organise and review 10.3/33; 10.3/50;10.3/21; 10.3/32; 10.2.5/10) Issue 91 There are delays in organising packages of (10.2.8/41; 8.2/76; 8.2/92) care if there is less than 24 hours notice. Issue 92 The completion of the patients records is (8.2/93) inconsistent Documentation Many patients at end of life will be able to access Continuing Care funding. The processes to gain funding for this required for CHC client group need to be efficient and timely to ensure a quick response to the patients needs. The resources that funding application deliver the care for this client group must have the skills, knowledge, capacity and responsiveness to meet the patients need. Issue 93 The NHS CHC documentation is a lengthy (8.1/78; 8.1/79; 8.1/87; 8.1/86; 8.1/81; 8.1/90; process, staff do not prioritise the CHC 8.1/91; 8.2/35; 8.2/85;8.2/86; 8.1/80) documentation

Issue 94 Lack of key professional to complete the (8.1/83; 8.1/84; 9.1/12; 9.2/15; 9.2/16; 11/9; 10.4/5; Fast Track CHC Funding application and 8.1/89; 10.4/22; 8.3/16) time required to complete Issue 95 Lack of understanding in relation to CHC (10.3/2; 10.3/83; 10.3/87; 10.3/3; 10.3/20; 10.3/45; funding processes 10.3/76) Issue 96 There are often concerns around who is (10.2.7/5; 10.2.8/31; 12.0/9) going to pay for treatment Issue 97 There is a lack of consistency in decision (8.2/87; 10.2.6/17) making by NHS Suffolk Issue 98 Patient is often lost in the middle of the (8.2/88) CHC process.

- 269 -

Provision of Social Issue 99 There is a lengthy assessment process (8.1/71; 9.1/54; 12.0/25; 10.2.8/30; ) Care Referrals to Social Arranging packages of care for patients in the community relies on well designed processes, good coordination and Services and communication among the various providers. Patients do receive services at home meaning that packages are Arranging Social Care successfully arranged but, as always, processes could improve further. Packages Issue 100 Lack of continuity of personnel / care (7/2) service Issue 101 Lack of communication following initial ('7/3,'7/33,'7/73) assessment Issue 102 Lack of continuity in social care services (8.2/105; 9.2/19; 7/92;12.0/18) Hospital Processes During the final year of their life, palliative care patients are often admitted to hospital. This can be a planned admission or more commonly an emergency admission. There are services across Suffolk that try and prevent unnecessary admission to hospital by providing an alternative or temporarily increasing community support. Despite these services emergency admissions for palliative care do still occur.

Admission Issue 103 Palliative care patients / HF patients are (10.2.4/2; 10.2.4/13; 11/45) inappropriately admitted to hospital Issue 104 Patients are admitted for symptom (8.1/12; 8.1/15; 7/7; 10.3/85; 8.2/13; 8.1/21; 9.1/42) management which could be dealt with in the community Issue 105 More patients are admitted at weekends and (8.1/17; 8.1/20) OOH’s Issue 106 Ambulance crews transfer patients directly (9.1/8) to the hospital and doesn’t divert admissions to the Hospice Provision of care in Provision of care within the hospital is undertaken by a variety of staff working in different teams and departments. the hospital Different teams and individuals within the team need to understand “who is doing what”, and “when”, understand the role and expertise of other professionals, and ways of recording and communicating outcomes.

Issue 107 There is an acknowledged limitation with (8.1/33, 8.2/59,8.1/139; 8.1/99; 11/15) regard to staffing resources available.

- 270 -

Issue 108 There is a concern by staff that there are (8.1/99,'11/15) too many meetings which affects their capacity to prioritise case load Issue 109 Delays in carrying out the assessment (8.1/120) process impact on the time taken to discharge and community services required Issue 110 There is no set process for assessment of (8.2/22; 8.1/136; 8.2/139; 8.2/137; 8.2/140; EOLC patients 10.4/27) Issue 111 In hospital the patients is often not (12.0/6) identified in terminal stages of life, especially dementia and stroke. Issue 112 Response to a referral to Specialist (8.2/44) Palliative Care Team can take up to 2 days Issue 113 LCP – not all specialities adhere to the (8.2/40; 8.2/127; 8.2/62) process and are reluctant to commence LCP; Patients on the LCP are less likely to go home Issue 114 Lack of capacity / inappropriate (8.2/68; 8.2/69; 8.2/63; 8.1/31; 8.1/18; 10.1/43; environment within the acute setting to care 8.2/48; 8.1/54; 8.1/58; 8.2/21; 9.2/32; 8.2/64; / accommodate patients who are 10.4/16; 9.2/12; 11/47; 7/8; 10.4/15; 10.4/35; approaching end of life 10.4/26; 10.4/30; 7/31; 7/10; 7/13; 7/12; 7/85; 8.3/23;10.4/14) Issue 115 Uncertainties around the DNAR process / (11/40) status and patients wishes Issue 116 Availability of competent staff with (8.1/24; 8.1/36; 7/15; 8.2/136) appropriate skills Issue 117 Palliative care appears to remain (8.1/26) concentrated in cancer services Issue 118 Lack of health screening (10.2.7/16)

- 271 -

Hospital Discharge There are a variety of efforts to reduce delays in discharge of all patients including those at the end of life. Although discharge for palliative care patients is improving, the system could be refined further by building upon the issues that were brought forward and are detailed below: Issue 119 Delay in completing Discharge Summary (8.2/128)

Issue 120 There are delays when the packages are (8.1/70)(11/17)(8.1/69)(9.1/11; 11/11;11/14) large and complex Issue 121 There isn’t a documented pathway for the (8.1/40; 8.1/134; 8.1/140; 10.2.4/15; 8.1/132) discharge process Issue 122 Lack of coordination with the Heart Failure (10.2.4/18) Service when patients are discharged Issue 123 Lack of flexibility and proactive planning (8.1/92; 8.1/94; 8.2/90; 8.1/113; 8.1/123; 8.1/133; with the Discharge Planning team 8.2/24; 8.1/141) Issue 124 There are delays in discharge when (8.1/72; 8.1/88) arranging a social care package Issue 125 There needs to be a Marie Curie Discharge (8.1/142; 8.1/143; 8.1/135) Nurse on site to fast-track discharge planning and enable patients to achieve PPC; there is a vacancy

Issue 126 The Discharge Planning Team are without (8.1/144) administrative support Issue 127 Lack of discharge planning leads to late (10.2.1/1; 10.2.1/16) referrals for Friday afternoon discharges Issue 128 Inability to facilitate24 hour rapid discharge (8.2/77;8.2/138) Issue 129 Discharges don't occur over a weekend, (10.4/9; 8.1/119; 8.2/36; 10.2.8/38) particularly complex discharges where more community support is required Issue 130 Lack of medication / prescriptions when (10.2.8/59; 8.2/89; 10.2.8/85) patients are discharged

- 272 -

Provision of Although dying is a natural process receiving the news and dealing with the knowledge of dying can produce a range Information and of emotions. Psychological support for patients and their carers and families is very important at the end of life. In Support to Patients addition to dedicated support, professionals delivering care to palliative care patients have a great role to play in and their Families supporting patients and their families in dealing with their emotions and feelings. and Carers

Issue 131 Lack of support for families and carers (9.2/20,10.2.11/3,10.3/67,9.1/17,10.2.5/19,10.3/28,' caring for a patient at home 7/62,'7/74,'7/78,'7/66,'7/67,'7/72,10.1/29,'7/83,'7/90 ,'7/60,'7/99,'7/109,'7/118,'7/120,10.5/17,'7/34,'7/11 7,12.0/23,8.3/20,12.0/26,12.0/28,12.0/29,10.2.6/25, 10.2.11/6,9.2/22,10.2.11/5,8.2/120 10.3/56,9.2/24,10.2.8/10,8.2/135,10.4/32,10.2.4/12, 13/20,'7/55,'7/103,10.3/73,10.3/74,'7/46,'7/49,'7/51, '7/52,'7/53,'7/56,'7/95,10.2.8/29)

Issue 132 There is a limited awareness of carers and (10.3/71,9.1/23,10.2.6/10,'7/91,'7/68,'7/54,'7/69,8.2/ their needs and a lack of assessments of 12,8.2/49,10.2.6/7,10.1/18,12.0/3,'7/86) carers needs Issue 133 Carer fatigue / family crisis is often main (9.2/39,11/1,8.2/2,8.2/18,8.3/22,8.2/6,9.1/52,10.2.6/ indicator for inappropriate admission. 13,10.2.6/8,8.2/14) Issue 134 There is no single point of contact for (8.1/11,10.2.11/1,9.2/42,10.5/1,8.1/10,'13/10,9.1/51 relatives to contact when unsure of ,8.1/14) changes in patient’s condition or services available Issue 135 Patient and carers do not know who to (9.1/1,8.2/119,'7/75,12.0/37,9.2/52,8.1/37,10.2.5/13 contact in crisis ,8.1/118) Issue 136 There is a lack of 24/7 services for carers (9.1/55,9.1/56,9.1/57,'7/80,10.3/64,10.3/68,9.2/13 ) Issue 137 Lack of an available24/7 helpline, practical (10.3/70,10.3/72) and telephone support Issue 138 There is lack of support for family and (10.2.1/24,8.1/5,'7/16,8.1/56,10.2.8/68,8.2/67,8.2/6 carers caring for patients approaching 0,8.2/4,9.1/36,10.2.6/3,10.2.6/4,10.1/13) death

- 273 -

Issue 139 There is a lack of time to allow staff to have (8.1/45,8.1/82,8.1/102)(10.2.5/14,'7/45,12.0/22,9.2/ frequent contact with patients and their 41,10.2.11/2) families and carers. Issue 140 Lack of care, services and support for (10.2.5/1,10.2.7/13,10.2.11/15,10.2.11/8,10.2.11/10 patients with LTC ,8.3/27,10.2.6/9,10.2.5/16,10.2.6/6, (8.2/30) Issue 141 Bereavement support is limited (10.2.11/1,'7/44,10.3/58,10.3/60,10.3/59,10.3/63,10 .3/69,10.3/61,'7/47,'7/48,12.0/20,12.0/21,10.4/37,10 .2.7/14)(10.2.6/5,10.5/16,8.2/65) Issue 142 Lack of information for carers (9.2/35,'7/102,9.1/15,9.1/27,'7/36,'7/84,10.4/12,10.4 /13,8.2/50,13/21,9.1/16,9.1/28,'7/114,9.2/21,'13/13,' 13/17)(9.1/14) Issue 143 There is a lack of clarity around the (12.0/11,10.3/62,'7/110,10.2.5/12,8.3/21,12.0/12,12 services available .0/13,10.2.11/14) Issue 144 Lack of rapid assessment for patients i.e. (10.2.11/9) continence assessments Issue 145 Lack of support for very elderly patients (10.2.11/12) who rapidly deteriorate Issue 146 Patient and families expectations are high (10.2.6/1,8.1/126,'7/65,8.1/127,10.2.6/2,'7/121,10.2 .8/26,10.5/15,10.4/8,10.4/31,10.3/34,10.2.10/1810. 2.6/18) Issue 147 No support is offered for patients with new (8.2/94,8.2/115) equipment when discharged

Issue 148 There is lack of consistency in (8.2/116,9.1/19,9.2/45,10.5/2,10.5/6,'7/6,'7/25,'7/26 communication with families )

Issue 149 Lack of social care package in the (12.0/34) community to support discharge

Issue 150 Patients and carers are unaware of the (7/28,10.2.8/92,'7/111,'7/30,'7/35,'7/37,'7/38,'7/40,' community services that are available 7/42,'7/43,'7/59,'7/61)

- 274 -

Communication with Communication to patients and their carers regarding diagnosis, prognosis, and treatment is provided by a variety of patients, carers and professionals. Effective communication is based on knowing “what to communicate”, “when” and “how”. families Communicating is a skill and some professionals are natural communicators but others need help in developing this skill. In addition to dedicated support, professionals delivering care to palliative care patients have a great role to play in supporting patients and their families in dealing with their emotions and feelings.

Issue 151 Communication and lack of understanding (10.2.2/5; 8.1/103; 8.1/46) of cultural and religious beliefs with BME patients

Issue 152 Difficulties communicating diagnosis, ( 8.2/3; 10.2.8/12; 8.2/55; 10.2.8/9; 7/94; 10.2.4/6) treatment and prognosis

Issue 153 Lack of information communicated to (8.3/18; 10.2.8/64; 8.3/24; 10.3/12; 11/6) patients, carers and families Issue 154 Family expectation/misunderstanding of ( 10.3/65; 10.2.8/63; 10.2.8/66; 10.2.8/62; 10.1/31; roles and responsibilities of professionals 10.3/48) in the service area

Issue 155 Lack of continuity (10.2.8/24)

Education and In Suffolk there is a variety of ongoing provision of training and education in palliative care. During our investigation a Training number of training opportunities were highlighted and these maybe provided using the existing structures. The request from stakeholders varied from general training to more enhanced training covering a range of topics such as care of the dying or end of life issues and good practice, or the roles and responsibilities of different services and professionals, communication and ‘breaking bad news’, symptom control and pain management, identification of the end of life patient and decision making related to moving clinical care from active treatment to palliative care.

Issue 156 Difficult to diagnose dying (10.2.4/8; 10.2.4/11) Issue 157 Lack of knowledge relating to medication (10.2.5/2; 10.2.12/3) required to manage palliative symptoms

- 275 -

Issue 158 Lack of skills / knowledge in caring for (10.2.12/1; 10.3/16; 9.2/51; 10.3/94; 10.2.8/35; palliative patients 10.5/3; 10.5/7; 7/77; 7/79; 10.3/111; 10.3/46; 10.4/1; 10.4/2; 10.3/1; 8.1/34) Issue 159 Lack of skills / knowledge in caring for (8.1/35; 8.1/60; 8.2/41; 10.4/29; 10.3/112; 12.0/8; patients approaching the end of life and use 12.0/40; 13/3; 10.5/14; 10.2.8/28; 10.3/13; 10.3/14; of EOLC Tools 10.2.8/84; 12.0/38; 9.1/49; 10.3/10; 10.3/11; 10.2.5/9; 11/41; 8.3/8; 8.3/12; 8.3/14; 8.1/39; 8.1/51; 10.2.7/7; 8.1/124)

Issue 160 There is a lack of knowledge amongst staff (8.1/57; 10.1/28) in relation to DNAR policy Issue 161 Not all staff are trained in relation to (10.2.1/30; 10.2.7/6) Verification of Expected Death (VOED) Issue 162 Lack of resource to support a formal (10.2.7/21; 12.0/4; 9.2/33; 11/21; 10.5/9; 8.2/58; rotation training programme, lack of 12.0/5; 9.2/43; 10.2.4/1; 10.3/4; 10.3/6; 10.3/7; palliative education and training 10.3/8; 10.3/9; 10.3/5; 11/42; 10.4/3) programmes Issue 163 Staff lack communication skill to prepare (8.2/5; 10.3/40; 12.0/2; 10.3/37; 9.1/50; 8.2/52) patients and relatives of approaching death Issue 164 There is a lack of training / skills for caring (8.3/1; 8.3/5) with Mental Health patients Issue 165 There is a lack of skill amongst staff to (8.3/19; 7/50; 12.0/1; 11/25) support carers

- 276 -

Communication and As the disease progresses it is very common that palliative care patients are admitted into hospital and then Information Sharing discharged back to community. Clinical information on the state of their health and care received within the hospital between Hospital and has to be communicated by the hospital to community professionals in order for community professionals to provide Community Services effective and appropriate care. Mechanisms to transfer this information are in place but this transfer could be improved and standardised further. Below we highlight some of the issues brought forward by community professionals in order to improve this communication

Issue 166 There is a lack of clarity within roles 8.1/107, 8.1/47, 8.1/50, 10.2.4/3, 10.2.4/5, regarding specific responsibilities relating 10.2.8/40 to communicating end of life issues. Issue 167 LCP is not embedded in all practice areas in 13/11'8.1/52, 8.1/111, 8.2/97, '11/31, '11/38, the hospital and community environments 10.2.8/8, when end of life stage is identified Issue 168 Communication systems/networks 8.1/108, 8.1/112, 10.2.1/3, 10.2.7/20, 10.2.7/22, including sharing of information, needs 8.2/7, 9.1/31, 8.2/9, 10.3/23, 10.3/27, 10.3/53, improvement, communication between 10.3/54, 10.3/81, 13/14, 10.3/15, 10.2.12/9, '13/11, agencies needs to be more consistent and 13/15, 0.1/17, 10.2.4/16, 10.2.4/17, 8.1/16, 8.1/110, clear 10.2.7/25, 9.1/6, 8.2/17, '11/28, 10.2.1/19, 10.4/10, 10.2.6/21, 10.2.1/11, 9.2/44, 10.2.4/7, '11/27, 8.1/93 , '11/48, 8.2/54, 10.2.1/27, 8.2/15, 10.3/107, 10.3/115, 8.3/15, 11/10, '11/16, '11/36, '11/37, '11/39,10.3/41,10.3/55,10.3/75,10.3/78,10.3/80,10.3 /88, 10.3/89, 10.3/97, 10.3/101, 10.3/105, 10.3/109, 10.3/119, '13/12, '13/12, 10.2.8/7, 10.2.8/13, 10.2.8/16, 10.2.8/17, 10.2.8/33, 10.2.8/34, 10.2.8/36, 10.1/19, 10.1/20, 10.1/19

Issue 169 There is a general lack of skill across all 8.2/38, 8.2/66, 9.1/30, 9.2/2, 9.2/9, 8.1/43, 8.1/100, professional areas in the practice of 10.4/34, 10.1/8, 10.2.8/67, '7/93, 8.2/134, '7/63, communicating information to the patient 10.4/6,10.4/11,10.4/11,8.3/11, 10.2.8/20 and their family carers about prognosis and the end of life stage within a timely manner.

- 277 -

Issue 170 There is a lack of provision for an 9.2/11, 9.2/14, 9.2/47, 10.4/17, 10.4/28, 10.3/79, information resource 24/7 to provide for 10.3/54, 10.1/33, 10.3/77, (12.0/17; 12.0/24) patients, family carers and professionals in relation to the advice, support and services available in the end of life stage.

Issue 171 There is a lack of sharing and involvement 10.3/29, 10.3/43, '7/58, 7/101, 10.3/5210.4/33, with the patient and family carer at all 10.3/108, 8.2/53 stages of end of life care, to enable them to have their wishes and choices heard and considered. Issue 172 There is lack of consistency with 10.4/7 community inpatient LOS HCPs understanding Issue 174 “Not clear of everyone’s role” (10.2.5/17,10.2.12/2,10.2.12/5,10.2.12/9,8.1/29,8.1/ the Roles of Different 38,10.2.1/12,8.2/131,9.1/48,10.2.8/73) HCPs Equipment The provision of equipment is vital for any patient to be discharged home, both in terms of providing the equipment on time and the availability of it. The provision of equipment is also important when discharging a patient. The issues raised about this from the report are detailed below.

Issue 175 The equipment service can only treat orders (10.2.10/10; 10.2.10/9; 10.2.10/5) on a first come first served basis unless there is some kind of clinical prioritisation indicated. Prioritisation has to come from the clinicians as the service cannot and shouldn’t assess need and make decisions around priority however it is not always marked in the documentation that the patient is palliative and the delivery urgent.

Issue 176 There have been difficulties for some time (10.2.10/6; 10.2.10/3) around urgent deliveries. The service constantly has to re-prioritise deliveries and the logistics can be difficult

- 278 -

Issue 177 There are difficulties in relation to the (10.2.10/4; 10.2.10/11) definition of palliative/urgent and staff has to take the clinician's word - from the clinician's perspective all deliveries are urgent. Issue 178 There is insufficient capacity within the (10.2.10/1; 10.2.10/8; 10.2.10/15; 10.2.8/44; service to meet the growing demand for 10.2.10/7) urgent deliveries. These are usually 2 man deliveries as often beds are required and this puts pressure on capacity. Extra vans put in to meet the increased demand (and enable people to go home) were withdrawn at the end of May 2010.

Issue 179 There are issues around capacity in relation (10.2.10/16; 10.2.10/20) to returned equipment: as demand has increased more equipment is going out and also coming back requiring cleaning and inspecting but the resources have remained the same. Issue 180 Lack of ability of the service to provide next (10.2.10/12) day delivery. Issue 181 There is a need to balance the clinical (10.2.10/14; 10.2.8/45) assessment of the needs of the patient and risk with patient choice: there is often insistence on a hospital bed but patients want to be in their own beds.

Issue 182 The assessment of need for certain (10.2.8/46; 10.2.10/13) equipment can be questionable for example the hospital will demand a high specification bed.

- 279 -

Issue 183 The collection of equipment is just as (10.2.10/17; 10.2.8/48)(10.2.10/2) important as delivery for the patient's family. When a patient dies, the relatives want to get rid of the equipment as soon as possible but collections only occur once a week and the relatives have to liaise directly with the equipment service. Collections are a challenge for the service because of capacity.

Issue 184 There are challenges around the logistics of (10.2.10/19) storing returned beds and also they have to order new beds to meet demand Issue 185 Access to equipment is inequitable across (9.1/20; 10.3/11) (10.2.8/49; 10.2.1/31) the county at present. Issue 186 If the patient is known to a Macmillan nurse, (8.2/70) the equipment appears to be delivered more quickly Issue 187 Delays to discharge are caused by (8.2/71; 10.3/114; 8.1/66; 10.3/106; 10.3/25; unavailability of equipment and/or time 10.2.1/32; 8.2/72; 8.3/25; 8.1/64; 9.1/21) taken to provide equipment in a patient's home particularly if a hospital bed is required. Issue 188 Sometimes there are delays in obtaining (10.2.8/43; 8.1/63)(10.2.5/21)(10.4/21) equipment from the Central Equipment Store and getting equipment in a timely manner - for example continence pads can take ages to access.

Issue 189 Lack of syringe drives on discharge from (10.2.8/8) Addenbrooke's. Issue 190 Not getting equipment sorted out quickly (10.3/38) (8.1/65) enough causes distress to other family members.

- 280 -

Issue 191 When transferring a patient home, hospital (10.4/24) transport won't take equipment such as mobility aids in the ambulance: BBL have to rely on staff or families.

Issue 192 Patients are sent home with extra (8.2/34) equipment and there is no support. Issue 193 There is no acknowledgement from the (8.2/73) equipment company saying when equipment will be delivered. Issue 194 Responses to requests for essential (9.2/38; 9.1/10)(8.3/26) equipment are inconsistent. The lack of a standardised response affects discharge planning. Transport The Ambulance services covering Suffolk both provide a comprehensive patient transport service and emergency services. A number of issues were highlighted that will help us to improve this service for palliative care patients. Issue 195 Redesign of the transport service has had (9.1/22) implications on discharge Issue 196 The PTS process is not consistent across (11/12; 11/35) Suffolk and eligibility criteria are not always applied. Issue 197 Current transport commissioning (11/18)(8.1/129)(10.2.6/20)(11/13)(8.2/124; 8.2/37) arrangements restrict flexibility Issue 198 The timing of transport is a challenge when (8.1/128) waiting and coordinating equipment. Issue 199 If transport is needed after 6.00 pm this can (8.1/131) be difficult and can cause delays. Issue 200 You cannot book a specific time for (10.4/25) transport to pick patients up: they either give an am or pm time and sometimes patients are taken home in the dark especially in winter.

- 281 -

Issue 201 Staff, family and carers need to be advised (8.2/125) of transport times. Issue 202 End of life appears to take less priority and (8.2/43) these patients are often left to the end of the day. Issue 203 Lack of communication to transport (8.2/95; 8.2/126) staff/crews of patient's DNAR status. Issue 204 Ambulance called, nothing to state patients (10.2.8/87) wanted to stay at home

- 282 -

Here we present the recommendations that bring together all the summary recommendations from the different parts of the report. We present the recommendations under the same headings used for the issues, in order to facilitate focusing on the part of the system that needs to be improved. Recommendations Recommendation High Level Recommendations t Refs Theme Care in the Community Recommendation 1 Ensure the new resource hub 8.1/3,8.1/10,8.2/1,13/5.8.2/65,8.2/65,8.1/4,10. supports end of life pathway 2.12/4,7/14,10.1/17,10.1/14,10.1/33,10.1/43, 10.1/7 Recommendation 2 Create an equitable care worker 8.1/35,10.4/10,10.4/24,8.3/19,10.3/32,10.2.5/ resource for rapid access across 2,12.0/4,10.2.8/21,10.1/23,10.2.8/52,10.2.12/ Suffolk 1,10.2.12/2 Recommendation 3 Review the role of CM in palliative 8.1/48,10.2.3/2,8.1/41,10.2.3/8, 9.1/4, 8.1/24 and end of life care of LTC Recommendation 4 Review present community team 8.1/11,10.2.8/1,10.1/32,10.1/51,8.2/19 roles in palliative and end of life care Recommendation 5 Develop more 24/7 services to 8.2/4,8.2/10,10.2.6/6,8.2/68,8.2/69,8.2/30,10. improve continuity of care 4/26,10.3/23,10.3/27,10.2.4/7,10.1/20,12.0/5, 12.0/37 Recommendation 6 Create local yet equitable 10.4/12, community teams across Suffolk 10.4/23,10.4/11,10.3/20,10.2.8/32,10.1/31,8.3 /9,13/3 Recommendation 7 Develop GP practice based teams 10.1/18,10.1/21,7/8,10.3/4,10.2.8/10,10.2.8/2 to keep care local 9,10.1/36,10.1/21,10.1/29,10.2.8/28,10.1/9,10 .1/22,10.4/18, 10.1/2, 10.1/12 Recommendation 8 Increase the level of staff available 10.3/29, 10.3/33, to provide palliative care for patients 10.5.19,10.2.8/47,10.2.8/66,10.2.8/72,9.2/30, living in the community 8.1/40,9.1/8 Recommendation 9 Access to personal care to be 10.3/5,10.4/25 available earlier in the patient journey - if the patient chooses. Recommendation 10 Care to be delivered according to 10.1/47,10.2.12/7,7/31,7/32,7/32,7/34,7/35,7/ patients needs and not resources 36,7/19,7/22,7/29,10.2.8/23,'7/20, 10.1/40

- 283 -

Continuity and Recommendation 11 Create a system where the patient 10.1/4,10.2.8/5,7/11,10.2.8/45,10.1/15,10.1/1 Coordination of Care has an identified key worker 6,10.1/26,10.1/32,10.2.11/3 and Services

Recommendation 12 Develop collaborative working with 10.2.1/6,10.2.5/6,12.0/15,10.5/8,10.2.8/4,10.1 the advanced care planning of /5,10.4/15,10.4/20,8.3/16,10.4/17,.10.2.8/4,10 patient care .2.8/6,10.2.8/76,10.1/6 Recommendation 13 Create a proactive process to 10.2..8/9,10.2.8/48,10.2.8/58,8.1/54, 13/11 managing pain relief Recommendation 14 Create a flexible reactive system to 10.2.1/3,10.2.3/4,8.2/71,10.1/6,8.2/8,10.4/16, met patients needs 10.2.8/59,10.2.8/44 Recommendation 15 Establish a bereavement supporting 12.0/7,10.2.8/75,10.2.8/42,10.2.8/51,8.1/26,1 pathways supportive Bereavement 0.2.11/7,8.2./50,9.1/18,12.0/10,9.1/17,10.2.8/ pathway. 70,10.2.8/71,12.0/17,10.3/6,10.3/18, 10.5/2, 10.5/3, 10.5/4, 8.3/17,

Recommendation 16 Improve more joined up working 8.3/8,10.5/9,10.5/20,10.5/27,9.2/29 with Nursing Homes Recommendation 17 Family carers to be indentified on 7/17,7/65,'7/53, 9.2/19, GP register Recommendation 18 Ensure resources for both cancer 8.1/2,10.2.3/7,9.1/30,9.1/32 and non cancer patients are equitable

Communication Recommendation 19 Standardising documentation 11/6, 8.3/22 across secondary and primary care settings Recommendation 20 Develop and improve how to 7/1, '7/10, 9.2/21 communicate a diagnosis to the patient in a timely manner

- 284 -

Communication with Recommendation 21 Patients and family carers should 8.3/14, 12.0/13, 10.1/3, 10.1/26, 10.1/27, Patients, their Families have an identified key worker to 10.2.8/54, 10.1/3, 10.1/13,8.2/38, 10.3/22, and Carers help them navigate services and 10.3/24, 10.1/60, 8.2/43,8.1/21, 8.2/45, coordinate care through pathway 10.4/8, 10.4/14, '7/66, 8.1/18, '7/73,10.2..8/12 between hospital and community

Recommendation 22 Improve access to patient 10.1/29, 10.1/30, 10.2.4/9, 10.2..8/27, information for OOH`s personnel 10.5/22, and OOH GP`s OOH Services Recommendation 23 Increase responsiveness of OOH 8.1/9, 8.1/45,10.1/38 teams Recommendation 24 Provide additional resources to 10.2.1/2, cover OOHs 8.2/48,10.2.8/24,10.2.8/25,10.2.8/30,8.2/70,8. 2/51,8.2/83 Recommendation 25 Create an OOH helpline for patients 7/4,7/57,10.2.6/3,7/7 and carers Recommendation 26 Provide additional palliative care 10.2..8/31,10.2..8/33,10.2..8/57,10.2..8/79,9.1 night service /19,10.3/26,10.3/26,10.1/18, 10.1/30, 10.2..8/82, 10.1/39, 10.2.2/3, Recommendation 27 Local GPs providing own patients 10.1/41,10.1/46,10.5/21,10.2.6/4 palliative care to provide palliative and EoL care to their registered patients Care Homes Recommendation 28 Greater support for care homes for 8.1/6,8.2/11,10.5/12,10.5/25,7/8 patients to die in the home Recommendation 29 Care homes to be able to access 10.5/6 palliative support from the community Recommendation 30 There needs to be greater 10.1/12, 9.1/1 awareness and improved use of the LCP in care homes Provision of Social Recommendation 31 Joint Social and Health teams to be 10.1/34 Care created

- 285 -

Recommendation 32 Collaboration of Social workers 8.2/5,8.2/58,10.2.8/63,10.2.12/6, Continuing Health Care Recommendation 33 Commission flexible services 8.1/47,8.2/67,10.2.8/22,8.2/59,9.1/13,7/50,8.3 Services /10,12.0/16 Recommendation 34 Review the CHC process for 10.2.6/2,8.2/55,8.3/21,10.3/14,10.3/16,10.2.6/ palliative and end of life care 1 Specialist Palliative Recommendation 35 Develop integrated hospital 10.2.4/2,8.1/7,8.1/15.8.2/32.8.2/66,10.1/25,10 Care Provision in /community SPCT .1/33,10.1/11,13/1,10.1/8,10.1/9,10.2.8/34,10. Hospital and 2.8/35,10.2.8/62,8.2/2,9.2/7,10.1/17,10.1/20,1 Community 0.1/28,9.1/5,10.3/30, 10.4/6

Recommendation 36 Identify a lead for Palliative and End 8.1/19,9.2/3.10.1/4 of Life Care Recommendation 37 Improve the access to palliative 8.1/17,8.2/22,8.1/22,10.5/1.8.2/23,8.2/29,9.2/ advice and support 8,10.1/15 Recommendation 38 Broaden the disease and 8.1/34.8.2/31,10.5/11,10.1/49,10.1/37,10.1/25 prescribing knowledge, of the SPCT ,10.1/50 Recommendation 39 Review the admission criteria to 8.2/24,11/2,9.2/12, 8.2/81,10.1/24 Hospice care Recommendation 40 Develop a hospice bed state 8.2/82, 8.2/9 information system Recommendation 41 Provide expert support to family 9.2/13,9.2/15,9.2/16, 8.2/72 carers Recommendation 42 Develop an equitable end of life 13/2,8.2/63,10.2.8/32,7/12,7/13 service across the county Recommendation 43 Establish an integrated system to 10.1/36 share patient information including ,8.1/29,8.1/30,10.2.3/6,10.2.8/17,10.2.8/20,8. PPC 1/52,8.1/53,9.1/26,7/67,7/68,7/69 Hospital Processes Recommendation 44 There needs to be greater 8.2/47 awareness and improved use of the LCP

- 286 -

Recommendation 45 Improve communication within 12.0/23,7/62,7/9,7/10,12.0/24 hospital environment with patients and family carers Admission of Palliative Recommendation 46 Review the admission pathway to 11/8,11/9,8.2/21.8.2/3,10.2.5/9,'7/49 Care Patients to and from hospice Hospital Recommendation 47 Provide facilities to support the role 8.1/50,8.2/57,8.1/39 of the Marie Curie Discharge Nurse Recommendation 48 All palliative patients to be identified 8.2/80,10.2..8/3, 10.2..8/8, on admission to hospital Provision of Care in Recommendation 49 Create a lead discharge coordinator 8.1/31, 10.2.8/53 Hospital role. Recommendation 50 Review the use of community beds 10.4/9, 10.4/7 for palliative care needs Recommendation 51 Improve the access to palliative care 10.4/13,12.0/2,10.1/14,12.0/2, 8.2/27 advice Recommendation 52 Medical staff to dedicate periods of 7/21,10.1/44,7/16 time to communicate with patients Hospital Discharge Recommendation 53 Review the rapid discharge policy 8.1/46,8.2/15,8.2/78,9.2/6

Recommendation 54 Involve community specialist teams 10.2.4/6 ,8.1/43 at the beginning of the discharge process Recommendation 55 Create a 7 day coordinated 8.2/60, 8.2/61,10.2.8/13,9.2/27, discharge process with improved and earlier discharge planning. Recommendation 56 Improve the availability and 8.2/79,11/5,10.2.8/14,8.3/7 timeliness of supporting services during the discharge process Recommendation 57 Improve communication on 10.2.12/3,9.1/24,9.1/25, 10.1/37 discharge

- 287 -

Provision of Recommendation 58 Develop a mentoring system to 10.2.5/5,8.1/32,8.1/36,10.2.11/2,7/42,9.1/12,9 Information and provide help to guide the family .1/15,8.3/13,12.0/27,7/38,8.2/16,8.1/13,7/43,7 Support to Patients through the process. /23,10.2.6/7,9.1/16,9.2/11,10.4/21,12.0/19,9.1 and their Families and /16,9.2/11,10.4/21,12.0/19 Carers Recommendation 59 Standardise information for patient 10.2.11/9,7/39,7/40,9.1/20,9.1/21,9.1/22,9.1/2 and family carers 3,7/69,7/70,7/71,7/72,7/74,10.2.8/56,10.211/4 ,10.3/12,12.0/3,7.61,7/54 Recommendation 60 Greater support to be made for the 8.1/5,8.1/44,10.2.11/6 vulnerable who live alone Recommendation 61 Education to develop 9.1/2 communication skills with families ,9.1/3,10.2.11/1,10.2.11/8,9.2/4,12.0/1,12.0/1 and family carers 8,12.0/21,12.0/25,12.0/26 Recommendation 62 Provide a true single point of 10.2.11/5,9.1/14,9.2/10,9.2/9,7/24,7/25,7/26,7 contact to access services /27,7/28,7/30,7/33,9.1/11,10.4/19,7/5,9.1/7 /information Recommendation 63 Provide support to the palliative 9.1/9,8.3/4 patient with MH conditions Education and Training Recommendation 64 Training for all staff in the use of 8.1/14,11/7,8.1/16,10.2.7/3,8.2/76,10.2.7/2,8. PPC and other care planning 2/41,8.2/46,8.2/49,8.2/52,8.2/53,10.3/19,12.0/ documentation 14,10.1/56,10.1/13,'11/1,10.5/23,10.5/24,10.4 /1,10.4/2 Recommendation 65 Advanced communication skill 8.1/55,8.2/41,8.2/25,12.0/33, training for all staff. Recommendation 66 Education to allow staff to recognise 10.2.5/8,8.1/23.8.1/33,8.2/35,8.3/2,10.3/9,10. and deal with patients, family and 3/11,9.2/5,8.1/38,10.4/5,10.3/31,12.0/9,8.1/20 carers when a patient is entering ,10.2..8/38,10.2..8/39,10.2..8/40,10.2..8/41,10 end of life stage. .2..8/46,10.2..8/60,10.2..8/67,10.2..8/74,10.2.. 8/77 Recommendation 67 Develop awareness of other 10.2.3/1,10.2.6/8,10.7/1,8.2/84,9.2/26,8.1/110 diseases /roles .2.6/8,10.27/1,8.3/1,10.2.7/9,8.3/6,8.3/12, Recommendation 68 Provide more training for staff on 10.4/3,8.2/74,10.3/15 NHS CHC process

- 288 -

Recommendation 69 Provide training on prescribing 8.2/6,8.3/3,10.2.8/37,8.3/3,10.2.8/37,10.2.8/3 medication for palliative and end of 8, 10.1/35 life care Recommendation 70 Provide access to education for 9.2/1,8.3/5,10.5/5,10.5/23,10.2.4/1,10.1/56,10 patients, families and their carers. .1/57,10.1/58,10.1/61 Communication and Recommendation 71 Provide a shared database between 10.2.4/8, 8.1/8, 8.1/25, 10.2.2/, 10.2.2/2, Information Sharing hospital and community to enable 10.2.1/4, 10.2.6/5, 10.2.7/6, 10.2.7/7, between Hospital and and improve the flow of information 10.2.7/8, 8.2/39, 9.2/14,9.2/17, 9.2/18, 9.2/20, Community Services in providing seamless services 11.3, 11.4, 10.3/1, 10.3/3, 10.1/8, 10.1/10, 8.1/28, 8.2/18, 10.1/5, 10.1/28, 10.1/38, 10.2..8/18, 10.2..8/55, 10.2..8/65, Recommendation 72 There should be improved access to 10.3/35, 10.3/3, 10.2..8/43, 10.1/52, information, advice and services 10.2..8/19, 10.2..8/19, 10.2.5/1, available 24/7 and throughout the 10.1/7,12.0/11, 10.3/21, 9.2/25, pathway for patients, family carers 10.2.5/3,10.2.5/3,12.0/6,12.0/8,'7/3,12.0/27,1 and professionals 2.0/30,12.0/35,'7/41,10.3/7,10.3/17,12.0/36,7/ 37,7/55,7/56,7/58,7/59.13/9, 13/10, 13/12

HCPs understanding Recommendation 73 Develop awareness and 10.2.5/4, 8.2/14, 8.2/34, 8.2/42, 8.2/75, the Roles of Different understanding between 8.2/77, 10.2..8/15, 10.1/1, 8.2/13, 10.3/34, HCPs organisations and professionals of 10.1/1, 8.2/44 their roles, responsibilities and capabilities Assessment & Care Recommendation 74 Increase the use of advance care 10.2.10/1, 8.1/51, 9.2/23, 9.2/24, 10.5/7, Planning planning 10.1/19, 10.2..8/61, 10.2..8/80, 10.1/42, 10.1/48,10.1/16, Recommendation 75 There should be greater integration 10.2.1/5, 10.2.5/7, 10.2.10/3, 10.3/10, of professionals in community 10.3/13, 10.1/31, 10.1/19, 10.1/54, 10.1/59, teams working together to provided 10.2.7/4, 10.2.7/5, 12.0/28, 10.1/24, 10.1/45, joint services and assessments 7/64,'7/63, 10.2.12/5, 9.2/2, 8.2/17, 10.1/53,10.5/10,9.2/22 Equipment Recommendation 76 Provide a rapid response and 10.2.10/2, 8.1/49, 9.2/31, 10.3/2, 10.3/25, improve the quality and efficiency of 10.2..8/26, 10.2..8/69, 10.2..8/81, 10.2.10/4, the equipment service for end of life 10.2..8/78 care

- 289 -

Recommendation 77 Improve access and links between 10.1/10, 10.1/34, 10.1/55 ambulance and hospice services Palliative and End of Recommendation 78 Create a defined EOL pathway for 8.3/15, 8.3/23, 8.3/24, 8.3/25,8.3/18 8.3/20 Life Care for Patients patients with Mental Health needs with Mental Health issues

- 290 -

The following Annex is available by electronic email if required (to be included in the main document at a later date).

Annex 1 – Ipswich Hospital Trust – Audit Sheet

Annex 2 – West Suffolk Hospital Trust – Audit Sheet

- 291 -

Annex 3 Questionnaire and Survey Monkey Analysis – GPs

Questionnaire and monkey survey analysis – 23 Respondents

1) Palliative care patients captured on register.

16 of 23 respondents replied to this question.

All patients in need of palliative care that 7 are registered with the practice? More than half of patients in need of 7 palliative care that are registered with the practice? Less than half of patients in need of 2 palliative care that are registered with the practice? 2) What percentage of time per month is allocated to palliative care patients.

17 of 23 respondents replied to this question.

Less than 5% 7 510% 8 1020% 1 2030% 0 3040% 1 4050% 0 5070% 0

3) Do you have regular meetings with district nurses and is that the right frequency?

21 of 23 respondents replied to this question.

Yes 19 No 2

4) Does your practice use the Gold Standard Framework (GSF)?

20 of 23 respondents to replied to this question.

Yes 15 No 5

5) If you could improve something in the way of communicating with other health care professionals what would it be?

9 of 23 respondents replied to this question.

• “To have the DN based at the practice as ‘direct’ contact, is now often done via paper rather than face to face.” • “Continuing the integration of Oncology, Hospice, Macmillan and other resources.” • “Regular meetings.” • “Go back to using message book in practice for referrals instead of going via single point of access.” - 292 -

• “More face to face discussions with individual patients.” • “Keep DN in the building, stop using forms and talk to each other.” • “To have attached small team of community nurses, exactly the opposite has happened in the last few months.” • “The return of the Primary Healthcare Team based on a practice and not an area or group of practices.” • “Monthly palliative care meetings that GPs, nurses and Macmillan nurses attend.”

6) Which community professionals would you like to improve communication with?

9 of 23 respondents replied to this question.

• “Communication is very good locally, especially with St Elizabeth Hospice – they operate an excellent Hospice at Home service. There used to be issues with St Nicholas Hospice thinking that the practice population should point towards the East – but some of the practice area falls in the West of the country.” • “Ensuring that all agencies can be contacted via the single pathway.” • “We need to decide who is the lead professional, is it the Macmillan nurse or the DN.” • Would be happy to communicate with a designated nurse/coordinator for that patient, district nurse of hospital liaison.” • “Consultants to converse with GPs before changing management plans and sending a fax.” • “Good communication with hospice already.” • “We have good communication with most of our community services including the hospice.” • “District nurses can be difficult to contact especially in the afternoons.” “Hospice teams/Macmillan nurses.”

7) Is there anything you would wish to improve about out of hours care for palliative care patients?

11 of 23 respondents replied to this question.

• “There is always anxiety about enough night cover if in terminal phase – night sitters. The hospice teams are very good about support and care.” • “The Hospice at Home combined with the rapid response nurses provide an excellent service in the East if this is not available in the West then it might be a consideration. Bildeston is a dispensing practice so it is relatively easy for the staff to get the drugs necessary to assist a patient OOH. ACS carers are sometimes difficult to maintain a continuity of care. Care packages for the terminally ill are easier to access than for those patients who have a social care need but not in terminal care, however the carers often change, which adds to the distress of the patients.” • “It would be nice if primary care was able to be involved but this is not possible due to the limitation of OOH in primary care. The hospice at home and hospice onecall contact point is very helpful and is to be supported.” • “Have an excellent out of hours ‘hospice at home’ team.” • “Fast access to 24 hour DN service to give injections. 24 hour hospice helpline with clinical input so patients can avoid A+E. Allow ambulance to take patients direct to hospice if symptoms severe and not controlled. Anticipation of what changes are needed for OOH so they are available.” • “Easier access to emergency nursing support, e.g. night sitting relief for relatives, needs to be available at short notice. Someone to give telephone advice on nursing matters overnight.” • “I have had no issues.” • “OOH service informed by our surgery, patients needs/condition.” - 293 -

• “Do my own patients, have my phone and mobile number.” • “TCN was fairly bad. HARMONI not much change. The GP contract 2004 was a big mistake for palliative care patients. Strange doctors from "elsewhere". The local GP COOP (no ideas) was significantly better. The idea is to have your own GP but usually only possible 24/7 in last few days. • “Should be OK as out patients have contact with hospice at home.” • “Greater compassion from OOH, palliative care patients are often told to wait until morning to contact own GP and are left in distress.”

8) How do you access specialist palliative care for your patients?

Telephone 4 Referral Letter 5 Hospice 12 Macmillan Nurses 6 District Nurses 2 Other 4

9) How do you access specialist palliative care advice?

Telephone 8 Referral Letter 2 Hospice 11 Other 4

10) Does the summary and prescription form received after hospital discharges convey enough information for the patient condition and needs?

21 of 23 respondents replied to this question.

Yes 13 No 8

11) Is the consultant’s letter generally received in a timely fashion?

21 of 23 respondents replied to this question.

Yes 11 No 10

12) What are the challenges in caring for palliative care patients from ethnic minorities?

Communication 9 Religious beliefs 3 Cultural beliefs 4 Other 6

13) What support networks are available to you to help you care for patients from ethnic minorities?

• Via the PCT • Interpretation service available - 294 -

• Language line (2 respondents) • Not used/no experience of this/not applicable (6 respondents)

14) How much do you think you would benefit from training in cultural awareness, and in end of life religious and cultural beliefs of ethnic groups?

19 of 23 respondents replied to this question.

A lot 2 A little 9 Not at all 8

15) How effective do you think you would benefit from additional training in the area of patient and family concerns regarding psychological issues?

21 of 23 respondents replied to this question.

A lot 1 A little 15 Not at all 5

16) How much do you think you would benefit in addressing patient and family concerns regarding spiritual issues?

20 of 23 respondents replied to this question.

A lot 1 A little 11 Not at all 8

17) Would you benefit from further training in palliative care?

20 of 23 respondents replied to this question.

Yes 11 No 9

18) Would you benefit from further training in “Breaking bad news”?

21 of 23 respondents replied to this question.

Yes 5 No 16

- 295 -

Annex 4 Questionnaire Analyses - Marie Curie Community Nursing Service

NHS Suffolk sent out 19 questionnaires and 5 were returned. This provides a response rate of 26.3 %

1. Graph No. 1 - What Type of Nurse are you?

Type of Nurse

20%

Registered Nurse

RSCN, RGN

Senior Health Care 20% 60% Assistant

2. Graph. No: 2 - What is your role in the patient’s home?

Five responses to this question were received.

Role in the patient's home

5 Nursing Care

Support to relatives/carers. 4 Overnight Care

3 Provide respite for family/carers 2 Assisting with personal hygiene Administering medication 1 Number of replies providing this role this providing replies of Number

0 Type of role provided

- 296 -

3. Does your role link in with the community nursing teams?

Five responses to this question were received. Four considered that their role did link in with the community nursing teams. One felt that the handover from the District Nurses would be useful but often didn’t happen.

4. Do you feel part of the community nursing teams?

Usually 1 Not really 2 Not as much as I would like to be 1 Yes, in some areas 1

5. Sometimes there are a number of need assessment documents left at the patients home. Which assessment do you usually read to be informed of patient needs and why?

Read through all notes 2 Risk Assessment 1 Medication Charts 1 Moving and handling 1 Read information where the DNs or trained MC nurses have 1 seen/assessed patient Reasons why read notes To know all there is to know about the patient. 2

6. Do you assess the patient’s care needs during your visit?

All five respondents confirmed that they assess the patients care needs during their visits.

7. Do you document your assessment?

Out of the five responses, three did document changes and one did not document the assessment, one didn’t usually document but always added notes to the communication sheet.

8. Do you feel that the patient notes left at the patient’s home are appropriately designed to record all palliative care needs?

Three out of the five members responding felt that the notes were not appropriately designed, one thought they were adequate and the other felt that there should be more specific care identified in the care plan.

9. Do you feel that the patient notes left at the patient’s home are:

Appropriately designed to record All five respondents didn’t feel that the notes were interventions and outcomes of visits appropriately designed. by different professionals?

Do you think they are designed to 4 Responded record interventions and outcomes 3 Answered No of different professionals? 1 Commented that not all profession groups write in the notes.

- 297 -

10. Please write down any changes in the above document that you would like to see.

Two responses were received for this question.

••• No concerns about the way documentation is presented. ••• Physio and OTs could have different coloured sheet for their input.

11. How do you receive information about the patient and the care required before your shift?

All five respondents received information from the Call Centre.

12. Graph. No. 3 - How frequently do you receive information from the community nursing team?

Frequency of information received from Community Nursing Team

20%

Not often 40% If I phone them

Before a first visit

20% Frequently receive out of date information

20%

13. Would you say overall communication with the community nursing team was? Five responded as follows:

••• Not very good ••• Good ••• Inadequate ••• From Suffolk DNs 90% ••• Mixed.

14. Does the overall communication adequately describe the patient’s needs?

Five responded to this question. Four felt that communication was not adequate “all of the time” and one considered it was adequate for the “majority of the time”.

15. How do you hand over to the community nursing team after your shift?

By Telephone 3 By Documentation 2

- 298 -

16. Do you have any difficulties with handover?

Three of the five respondents felt they did not have problems with handover, one said usually after normal working hours but seldom otherwise and the other felt that the handover was fairly reliable.

17. What lines of communication do you have with other professionals? Marie Curie Nurses 1 Out of Hours 1 Carers 1 MCCC Nurse Service Manager 1 CNS 2 Telephone and face to face 2 Meetings/emails 1 Hospice at Home 1 GPs 1

18. Which professionals would you like more contact with? DNs 2 Hospice Staff 1 Community Nursing Team 1 Happy to liaise with any 1

19. What action do you take if there is a medical problem with the patient during your shift?

All five respondents answered this question as follows:

Out of Hours (4) Hospice at Home (4) Paramedics (1) DNs (1) Team Manager (1) Ambulance service for emergencies (1)

20. In your experience what are the challenges in caring for patients from ethnic minorities?

Information awareness in respect of people’s beliefs (1) Communication (1) Cultural needs and religious beliefs (1) Not a lot of experience recently (2)

21. What support networks are available to you to help you care for palliative care patients from ethnic minorities (e.g. interpreter services; staff training in cultural awareness; palliative care outreach workers).

Three respondents stated that they were unaware or not sure what networks were available. One hasn’t experienced the need and if need arose would go through team leader to set up training awareness. The other response was to use the family, courses, internet and colleague experiences.

22. How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide for?

- 299 -

Benefit greatly 4 Have had one study day on spirituality and cultural awareness 1

23. In thinking about the care of palliative care patients in the community setting please indicate what you feel are the barriers to effective home care?

Not enough care available 1 Lack of information 1 Communication 2 Out of Hours Doctors 1 Knowing who to contact 1 Medication not written up correctly 1 Equipment supply delays 1

24. In thinking about the patients palliative care journey what do you think at this time works particularly well? All five respondents answered this question. Their comments are as follows:

Marie Curie attendance gives families assurance of devoted care 1 Holistic approach 1 Symptom management 1 Continuity of care by seeing nurses on a regular basis 1 9 hour night gives better support to family to enable sleep 1 Patient choice about their care and the support to die at home 1

25. Please add here any comments you have for improving palliative care in the community. Four respondents added comments in this section as follows:

VOED course to improve continuity of care 1 RNs who are available to work a night and not given a shift could 1 be on call to go out to MCCC HCAs to verify death where appropriate. Better use of LCP 1 MCCC handover sheet could be reviewed (suggestions available) 1 Patients being assessed at home by MC nurses 1 More contact with DN before attending a new patient to gain 1 information about the patient/family needs as possible. Out of hours doctors improved 1 Marie Curie to certify death 1 Seamless service from hospital to home 1 It is the most rewarding thing I have ever done 1 Acknowledgement of the care families need. 1

- 300 -

Annex 5 Macmillan Specialist Nursing Care – NHS Suffolk

Questionnaire Analysis

NHS Suffolk sent out 8 questionnaires and 2 were returned. This provides a response rate of 25%

2. What is your role in the patient’s home?

Two responses to this question were received with various roles.

Pain and symptom control. Psychological support. Provide support, information and guidance to patients with cancer or lifethreatening illness. From point of diagnosis and support for family.

Symptom management, benefit advice and referral to other agencies.

3. Does your role link in with the community nursing teams?

Both respondents felt their role linked in with the community nursing team.

4. Do you feel part of the community nursing teams?

Both respondents answered yes but one respondent added comments below.

Regular GSF meetings provide a good forum for discussion and close working with community nursing teams and GPs. We also liaise closely by phone. If we had increased staff members and smaller caseloads there would be more time for better communication

5. Sometimes there are a number of need assessment documents left at the Patients home. Which assessment do you usually read to be informed of patient needs and why?

Community nurses notes Community nursing documents are useful as a means of communication, so I always utilise and complete these

6. Do you assess the patient’s care needs during your visit?

Both respondents confirmed that they assess the patients care needs during their visits.

7. Do you document your assessment?

Both respondents confirmed that they documented their assessments in the following areas

System One Community Nursing Documents

- 301 -

8. Do you feel that the patient notes left at the patient’s home are appropriately designed to record all palliative care needs?

One of the two members who responded felt that the notes were not appropriately designed and the other felt they were adequate.

9. Please write down any changes in the above document that you would like to see.

One responded with “yes”

10. How do you receive information about the patient and the care required before your shift?

Two responded as below

Fax, post, telephone By phone or face to face contact with community nursing teams, liaison with GP and with specialist nurses at the hospital and hospice

a) Are these methods effective?

One responded yes, the other said partially.

b) If no, how could this be improved?

Referrals from hospital need more information i.e medications, treatment/care plan

Referrals made to the Macmillan CNs are often sparse and lack adequate detail and information.

11. How frequently do you receive information from the community nursing team?

When needed 2

12. Would you say overall communication with the community nursing team was? Two responded as follows:

Excellent (1) Good (1)

13. Does the overall communication adequately describe the patient’s needs?

Two responded to this question. Both answered yes but one did add “usually”. When the system doesn’t work they receive information via GP, patient notes, by enquiring via hospital CNs

14. How do you hand over to the community nursing team after your shift?

Write comments in Community Nursing notes 2 Call District Nurse and leave message 2 + 1 x if

- 302 -

needed Call patient’s Social Worker 1 (if appropriate) Hospice/Hospice @ home/GP 1

15. Do you have any difficulties with handover?

Neither of the two respondents experienced any difficulty with handover.

16. Do you have lines of communication with other professionals?

Both respondents answered that they have communication with all four of the professionals listed below.

Palliative Care Specialist Nurse GP Social Services Agency Staff

17. Which professionals would you like more contact with?

Palliative Care Consultant 1

a) Which services will provide the assistance you need?

Hospice at Home 1 Hospice 2 Hospital 1 Social Services 1 Local Care Team 1

18. What action do you take if there is a medical problem with the patient during your shift?

Liaise with GP, change medications, out of hours, liaise with Harmoni, Liaise with Hospice when appropriate Depending on problem and when contact GP or out of hours service. Hospice at Home, hospital, 999 if appropriate

19. In your experience what are the challenges in caring for patients from ethnic minorities?

Communication Communication, Cultural beliefs and religious beliefs Finding funding for interpreter All the above can be problem areas but I rarely have patients from ethnic minorities on my caseload.

20. What support networks are available to you to help you care for palliative care patients from ethnic minorities (e.g interpreter services; staff training in cultural awareness; palliative care outreach workers). - 303 -

Training, reading, meetings with Chaplains who undertake multicultural training and support Interpreters available. Training is available

21. How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide for?

Little benefit Little. No benefit better to seek advice as and when needed.

22. In thinking about the care of palliative care patients in the community setting please indicate what you feel are the barriers to effective home care?

Both of the respondents offered the following comments to this question.

Understaffing of community Macmillan CNS Team lack of carers (especially in rural areas) lack of respite beds Main problem is the shortage of frontline staff carers, nurses and our Macmillan team Under resourcing of these areas is long standing and leads to a detrimental effect on patient care. We do not need more managers or facilitators, but increased staffing levels within existing services.

23. In thinking about the patients palliative care journey what do you think at this time works particularly well?

Two respondents answered this question. Their comments are as follows:

Having a designated Macmillan CNS provides continuity of care for patients and families GSF meetings, LCP Usually there is good teamwork between community nurses, Hospice at Home, GPs and Macmillan CNs team using Marie Curie carers when needed. When the present system works well patients and families feel well supported.

24. Please add here any comments you have for improving palliative care in the community.

Two respondents added comments in this section as follows:

For Macmillan CNs team to continue providing support to patients from time of diagnosis onwards at times of need. Increased staffing levels would also improve this.

- 304 -

Annex 6 - Questionnaire Analysis– Community Matrons

In Suffolk 9 questionnaires were sent out and 5 returned. This provides a response rate of 55.5 %

Your community caseload

1. At any one time, on average, how many patients do you have on your caseload?

5 of 5 respondents replied to this question.

Patients Number of respondents 0 – 10 0 10 – 20 0 20 – 30 0 30 – 40 1 40 50 4 50+ 0

2. At any one time, on average, how many of these are in need of palliative care?

5 of 5 respondents replied to this question.

How many in need of palliative care Number of respondents All chronic incurable 1 End of life 1 Currently palliative 3

3. Approximately per month, what percentage of your time is allocated to palliative care patients?

5 of 5 respondents replied to this question.

Percentage Number of respondents Less than 5% 1 5 – 10% 1 10 – 20% 0 20 – 30% 0 30 – 40% 1 40 – 50% 1 50 – 70% 1

4. If more time was allocated to meet palliative care patients’ needs, how would you use it?

5 of 5 respondents replied to this question.

Use of time allocated Number of respondents Visit patients more often 3 Spend more time assessing and care 1 planning Spend more time educating carers 0 Spend more time organising other services 1 Other (please describe) 0

- 305 -

Communication and co-ordination of care

Communicating with GPs

5. Do you have regular meetings with the GP to discuss the needs of palliative care patients?

2 of 2 respondents replied to this question.

Yes No 3 2 a) If yes, how frequently? 2/5 surgeries. Weekly over the phone.

6. Is this about the right frequency?

4 of 5 respondents

Yes 2 No 2

2 of 5 respondents replied to this question. a) If no, do you feel that the meetings should be:

More frequent 2 Less frequent 0

7. If the practice you work with does use The Gold Standards Framework, has this enabled better communication to you about palliative care patients?

5 of 5 respondents replied to this question.

Yes 3 No 2

8. If you could improve something in the way of communicating with the GP, what would that be?

3 of 5 respondents replied to this question.

• “Have less GP surgeries to communicate to/with. Feel thinly spread in my role due to geographical spread of my caseload.” • “Reduce the amount of surgeries I cover so I can have closer working with GPs and DNs.” • “Structured time slots (I have 11 GPs).”

Communicating with secondary care

- 306 -

9. Are you always informed when a palliative care patient on your caseload is discharged from hospital?

5 of 5 respondents replied to this question.

Yes 0 No 5

10. Would you like to be informed of every discharge of palliative care patients on your caseload?

5 of 5 respondents replied to this question.

Yes 5 No 0

11. When you are informed that a palliative care patient has been discharged from hospital, what form of information do you receive?

5 of 5 respondents replied to this question.

Written 3 Verbal – Message 0 Verbal – Conversation 1 Both written and verbal 0 All 1

12. In most situations, does the communication (written or verbal) adequately describe the palliative care patient’s needs?

5 of 5 respondents replied to this question.

Yes 2 No 1 Sometimes 2 a) If you answered no or sometimes, what more information do you usually require?

3 of 5 respondents replied to this question.

• “Need a copy of discharge letter to understand what has been addressed/meds.” • “Phone call.” • “What care is in place, who else is involved in patient care

13. In most situations, does the hospital communication provide enough information regarding the type of home care that has already been arranged?

Yes 2 No 2 Sometimes 1

- 307 -

14. After a palliative care patient is discharged from hospital do you access the documents sent to his/her GP such as the discharge summary and prescription form and the consultant’s letter?

Yes 2 No 0 Sometimes 3

a) If no, would it be useful to be able to access these documents?

3 of 5 respondents replied to this question.

Yes 3 No 0

Communication with other community professionals

15. Sometimes a number of professionals coming from different organisations are involved in providing care to palliative care patients in the community. Are you informed of their visits?

Yes 2 No 1 Sometimes 2 a) If no, how could this be improved?

1 of 2 respondents replied to this question/

• “Everyone involved with the patient, writing in the patient notes, and more communication with all professionals involved.”

16. Are you always informed when additional services of home care are arranged by someone else?

5 of 5 respondents replied to this question.

Yes 1 No 2 Sometimes 2

17. Generally, who is a patient told to call when they need help?

5 of 5 respondents replied to this question. a) During the day Com Matron, Com Matron, Com Matron, GP/Com Matron, District Nurses or GP b) In the evening? Out of hours, Harmoni or OOH or DN evening service, GP, OOH, OOH or hospice at home c) Overnight? Out of hours, Harmoni or OOH, GP, OOH, OOH or H@H d) At the weekend? Out of hours, Harmoni or OOH or DN, GP, OOH/D Nurse, OOH or H@H

- 308 -

18. Thinking about palliative care out-of-hours, what do you think works particularly well?

3 of 5 respondents replied to this question.

• “Hospice at home, preemptive prescribing, DN liaison, Marie Curie.” • “COPD avoided admission, advice from hospice.” • “Hospice at home service.”

19. Thinking about palliative care out-of-hours, what would you wish to improve?

5 of 5 respondents replied to this question.

• “Communication with services – e.g. ambulance, Harmoni – having time to send a report or communication to them.” • “Advance care planning, preferred place of care, Liverpool Care Pathway in place.” • “Communication.” • “Systemone access.” • “OOH service.”

Patient assessment and documentation of care

20. Do you feel that the patient notes left at the patient’s home are appropriately designed to record all palliative care needs?

5 of 5 respondents replied to this question.

Yes 3 No 2

21. Do you feel that the patient notes left at the patient’s home are appropriately designed to record interventions and outcomes of visits by different professionals?

5 of 5 respondents replied to this question.

Yes 4 No 1

22. Please write down any changes in the above document that you would like to see.

1 of 5 respondents replied to this question.

• “Currently have core patient held notes, but as some are further specific to palliative care needs e.g. advanced directive, PPC, DNAR.”

23. A number of health and social care professionals (including those from the voluntary sector) visit a palliative care patient to provide services. Which of these:

2 of 5 respondents replied to this question. a) Usually contribute to the patient notes left in the home (please list)? • DNs. • District Nurse, Community matron, Marie Curie, Community therapy, Macmillan. b) Usually keep their own separate notes in the patients home (please list)? • DNs. - 309 -

• Crossroads, Core agency (SS), Age concern.

c) Do not usually contribute to documentation left in the home (please list)? • GP • Macmillan use own notes and don’t leave with patients.

24. Graph No. 1 Do you have easy access to any of the following specialist nurses for palliative care patients?

5 of 5 respondents replied to this question.

5 Yes 4 No Never required 3

2 Number of respondents 1

0 Macmillan Heart Respiratory Diabetes Mental Other disease health

25. How do you gain access to specialist palliative care advice?

5 of 5 respondents replied to this question.

a) During normal hours - GP - Telephone to Macmillan - GP or Hospice - Hospice at home - Through Macmillan or H@H

b) Outofhours - Hospice at home - Telephone hospice and Macmillan - Hospice - Through H@H

Caring for patients from ethnic minorities

26. In your experience what are the challenges in caring for palliative care patients from ethnic minorities?

5 of 5 respondents replied to this question.

Communication 5 Religious Beliefs 3 Cultural Beliefs 3

- 310 -

27. What support networks are available to you to help you care for palliative care patients from ethnic minorities? (e.g. interpreter services; staff training in cultural awareness; palliative care outreach workers)

3 of 5 respondents replied to this question.

• “Language line, relatives.” • “Interpreter, but I have no minority groups in my caseload.” • “Not had to call on support.”

28. How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide care for?

A lot 2 A little 3 Not at all 0

Education needs

29. Care of patients with fatigue

5 of 5 respondents replied to this question.

Circle the number from 0 – 10 that best describes your perception and experience, where 0 indicates ‘not at all’ and 10 indicates ‘extremely effective’. If the item is not applicable for your practice, indicate ‘N/A’.

Number of respondents (number on the scale) N/A 1 0 1 2 3 4 5 6 7 8 9 10 3(8), 1(5)

30. Care of patients with sleep changes

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 2(8), 1(7), 2(5)

31. Care of patients with dry mouth, change in food tastes or appetite changes

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 1 0 1 2 3 4 5 6 7 8 9 10 3(8), 1(5)

32. Care of patients with constipation or diarrhoea

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 2 (10), 1(9), 1(8) - 311 -

33. Care of patients with nausea or vomiting

2 of 2 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 2 (8), 1 (10), 1(7), 1(9)

34. Care of patients with breathlessness

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 3 (8), 1 (10), 1(7)

35. Care of patients in pain

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 2 (10), 2(8), 1 (9)

36. Care of patients with syringe drivers

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 1 0 1 2 3 4 5 6 7 8 9 10 2 (10), 1(0), 1(9)

37. Care of patients with impaired tissue integrity

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 3 (10), 1(9), 1(8)

38. Care of patients with terminal agitation

5 of 5 respondents replied to this question.

Number of respondents (number on the scale) N/A 0 0 1 2 3 4 5 6 7 8 9 10 2 (8), 1 (10), 1(5), 1(9)

39. Have you had training in palliative care?

5 of 5 respondents replied to this question.

Yes 4

- 312 -

No 1

40. Do you feel you would benefit from more training in palliative care?

Yes 5 No 0 a) If yes, please list the disease groups of topics for which you feel you need more training?

2 of 2 respondents replied to this question.

• “Dementia” • “Dealing with noncancer diseases” • “Heart failure – drugs, breathlessness, pain – analgesia.” • “Breathing, anxiety, sleep issues.”

41. How effective do you think you are in addressing patient and family concerns regarding psychological issues at the end of life?

5 of 5 respondents replied to this question.

Very effective 1 Effective 3 Average 1 a) How much do you think you would benefit from additional training in these areas?

4 of 5 respondents replied to this question.

A lot 2 A little 2 Not at all 0

42. How effective do you think you are in addressing patient and family concerns regarding social (e.g. relationship, conflict) issues at the end of life?

5 of 5 respondents replied to this question.

Very effective 0 Effective 5 Average 0 Not very effective 0 Not at all effective 0 a) How much do you think you would benefit from additional training in these areas?

A lot 2 A little 2 Not at all 0

43. How effective do you think you are in addressing patient and family concerns regarding spiritual issues at the end of life?

4 of 5 respondents replied to this question.

- 313 -

Very effective 0 Effective 4 Average 0 Not very effective 0 Not at all effective 0 a) How much do you think you would benefit from additional training in these areas?

5 of 5 respondents replied to this question.

A lot 2 A little 3 Not at all 0

44. In thinking about the care of palliative care patients in the community setting, please indicate what you feel are the barriers to effective home care?

5 of 5 respondents replied to this question.

• “Shortage of staff in community services e.g. DNs, commencement or end of life pathway documentation.” • “For some patients with LTC, knowing when to start GSF, and finding the correct time to discuss PPC, and EOL issues.” • “Lack of communication between all disciplines. GP visits no continuity for patient. Not being integrated with Mental Health or Social Services. Poor access for psychological help. Poor documentation.” • “Limited resources, communication, knowledge of services out in the community.”

45. In thinking about the patient’s palliative care journey, what do you think at this time works particularly well?

4 of 5 respondents replied to this question.

• “Liaison with DNs, Hospice at home, GP, End of life pathways, preemptive prescribing, equipment services, symptom management.” • “Building rapport with patient and family, getting to know them and being able to help them indentify deterioration in their condition, so appropriate care can be initiated.” • “Services provided by Hospice. I have had quite a few patients access the day centre and complementary dept palliative care nurses.” • “Increased visits, good documentation and good communication.”

46. Please add here any comments you have for improving palliative care in the community.

4 of 5 respondents replied to this question.

• “Better support for dementia patients.” • “Greater liaison between DNs and Matrons for prescribing, less duplication of paperwork, GPs to visit earlier in the process and keep up at least fortnightly visits.” • “Introduction of PPL document. Discussions around advanced directives. Better education for all staff.” • “Better links with secondary care and OHH systems.”

- 314 -

Annexe: 7 - Questionnaires received back from ACS – including Social Workers, Community Care Practitioners and Staff at Customer First

11 responders

1. What is your role with the customer (briefly describe your main duties and what type of setting you are based in i.e. Hospital, area team, GP Practice)? social worker based in area team Main duties are to comply with a system led service, meaning that I spend 90% of my time doing paperwork, and trying to keep up with all requirements of the performance indicator team Unfortunately human beings have become less of a priority in my job and I am sure that senior management regard them as more of a nuisance area team, transferring care from Home First to external providers discussing finance and offering support Discussing respite Social activities residential, nursing, VSH, carers role Social worker in area team. I see my role as being a gateway to services forming a trusting empathetic relationship with customer & family I am a social worker in a com team, I work with adults with a physical disability and LD and OP over 65. my main duty is to arrange for services to meets assessed need which meet the eligibility criteria I am a generic worker and work with patients over 75 within their own home. I assess for equipment, look at environment, investigate personal care, do low level nursing and can cut toe nails, some of the patients I see are palliative I am a SW in CF, role involves safeguarding initial assessment CCP in Sax, main role to review package in home or resi nurse home CCP in CF, assess needs arrange package and advice. senior prac at CF Needham areas team, assessment and review, identifying carers, offering advice and support. CCP in area team, assess and review customers care needs.

2. Does your role link in with the community nursing teams?

6 responded yes

2a. If yes, in what way?

No, on occasions will discuss cases with comm nurse for more care Joint meetings and visits as needed, y in service/care provision Yes joint visits information sharing referrals to relevant services i.e. district nursing team cmht physio and rehab The nurses are based in the same building and referrals and info can be exchanged with our patients Discussions with comm nurses, further info if needed, they may visit, in connection with the review of package around comm nurse input Referrals are often received from the comm team and when we are unable to provide care immediately we sometimes refer to the comm team to see if they could provide care in the interim period When there are significant health needs, phone comm nurse, referral for CHC joint working in problem solving occasionally MDT, no.

- 315 -

3. How do you receive information about the customer?

All information is via customer first. Due to many people involved in their levels of ability it is pot luck as to whether the information we receive is accurate or not Information is passed through Customer First to area teams on Care First 6 data base system. Through a referral system team has two senior practs and its own review coordinator cases/customers are discussed on an individual basis before allocation Computerised info which is then allocated accordingly, fax/GP, information is passed through Customer First to area teams on Care First 6 data base system. They may be known to us already with some info on the system. Via social services computer network or CF, hosp team GP Surgery, comm nurse via email or phone We primarily work over the phone and speak closely to customer, if not possible to speak to customer If a referral been received from the comm team then they are often well placed to advise of past med history, prognosis, care needs & family support etc. info is gathered from customer direct gap will confirm. info collected from agencies providing care. referral to CF by phone, phone from comm nurse, through CF database, via CF to senior prac then onto a team list for allocation to member of team. If allocated that worker will pick it up.

3a. Are these methods effective?

Yes No 8 2

3b. If no. how could this be improved?

4. Graph No: 1 - How frequently do you receive information from the community nursing team or other professionals?

4. How frequently do you receive information from the community nursing team or other professionals?

Rarely

Very frequently

When needed

- 316 -

5. Would you say overall communication with the community nursing team or agencies was?

Average Excellent Good 1 1 3

6. Does the overall communication adequately describe the customers' needs?

As before, comm team are sometimes Yes not aware of the processes involved with setting up social services care and do not always understand the criteria. Can create confusion and expectation 1 3

6a. If no, how do you obtain further information?

Make contact to ask for info, GP, HF

7. Graph No: 2 - Do you have lines of communication with the following professionals?

7. Do you have lines of communication with the following professionals?

Home First

Mac Nurse

Palliative Nurse

Hospice at Home

Agency Staff

0 1 2 3 4 5 6

8. Which professionals would you like more contact with?

I have not as yet encountered difficulties contacting any professionals, I do often find face to face more effective but that could be me I do like to know people, would be helpful to have a regular updates/meeting with local GP/DN, pall care nurse to gather info on customer,

9. What action do you take if there is a medical problem with the customer? I can if needed discuss with customer, family, GP/nursing, refer to relevant health prof. We have a comm matron in our team or if more severe GP then emergency services, GP, Com nurse, assess customer’s immediate needs and determine whether health or social care will best meet these needs. I would also look at working in partnership with the comm nurs/pall nur team re ongoing support prior to passing onto area social work teams for follow up.

- 317 -

10. Which services will provide the assistance you need?

1 all, 1 nursing team, GP, Hospital, respite care intermediate care team ,

11. In your experience what are the challenges in caring for customers from ethnic minorities?

Comms and religious beliefs Cultural beliefs 3 1

12. What support networks are available to you to help you support palliative care customers from ethnic minorities?

I have not encountered problems as yet in my career, I work in a well established team with a wealth of knowledge research facilities are all available to me as are the avoce net works (I have been refused a learning opportunity). No experience of BME group of patients, so far there has always been family members who will interpret. The language line is available though not used as yet. Not many BME in Woodbridge /coastal area, language line is used to comm with customers and family, challenges when working with customers from BME are my own deficits in experience. Need constant training updates

13. Graph No: 3 -How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide?

13. How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide care for?

Not at all, 1

A Little, 2

A Lot, 6

- 318 -

14. In thinking about the care of palliative and end of life care customers in the community setting, please indicate what you feel are the barriers to effective care/support in the home/community?

The barriers to effective care are the current structure of social services and this does not allow those from area offices to join up effectively with health colleagues, Home First have a little capacity Suffolk does have its hard to reach area and I have in the past encountered problems getting home care in these areas. Transferring to an external provider is often difficult as agencies do not always provide the same care as Home First and customers are not happy when care is transferred to another agency from Home First , funding and staff shortages, in some cases I have experienced difficulties. This lies with the families needing information and me not having the answers. Also some families are so upset at who is dying they cannot cope with caring and making the patients feel comfortable At CF we do initial ass. To set up care, pass over to area teams. Packages not always set up straight away. Often situation at home gets to crisis before referred to CF, HF able to provide care facility quickly. Necessary equipment hosp bed takes while to deliver, hard to do job and health & safety issue. Unclear on CHC eligible. It is not always clear what other support is in place. comms between agencies disjointed at times. Hospice social workers should undertake assessment and service delivery for pall customers. More joined up working with ACS and pall care nurses, lack of funding Sever disagreements over funding responsibilities Family expectation/misunderstanding of roles and responsibilities Lack of insight/denial of the dying person/the unspoken issue of pending death A lack of lets work together in a person centred way to support person and other sot come to terms with situation Customers expectation on their end of life care can be a barrier in this self i.e. reluctance to accept care and support Families expectations on the service can be challenging Financial issues in the provision of care an support can cause huge barriers The customers home and location can at times be in areas that care and support are difficult to find or provide

15. In thinking about the customers palliative care journey what do you think at this time works particularly well?

The working relationships formed I know the services is invaluable however I am aware that there are not enough resources to meet everyone’s needs and therefore not everyone is fortunate enough to be supported in their choice of end of life wishes Having continuity with the care provider stressful for me as carer but just having the one or two faces helps That there are other agencies that are able to offer support, info available for customers has improved greatly Can get care in within day or 2, nursing/support service, fast tracking sometimes no joined up process Not sure, deal with too many in the community already.

- 319 -

16. Graph No: 4 - Are you aware of support services available for the family caring for the customer? If so what are these and who provides them

16. Are you aware of support services available for the family caring for the customer? If so what are these and who provides them

Suffolk family carers

No not aware

Mac nurse

Marie Curie

Age Concern Hospice

Crossroads Care

Hospice

0 1 2 3 4 5 6

17. Have you completed a carers assessment or review? If so when was it recorded:

I do carry out carers assessments but I hardly get involved with people these days Many reviews/assessments, many assessments and reviews Yes I have completed many CA`s Yes often 3 day palliative care course attended although I complete CA`s I haven’t done one on pall care patient, little

18. What training have you received in Palliative/End of Life Care?

I think the quality of service received in Suffolk is actually very high I have been a generic worker with the care team for 6 yrs and have hands on experience with many teams, income from a hospital background I have worked with both life and death within the hospice 2 said none Not had recent relevant training Require more Some limited training,

- 320 -

19. Please add any comments you have for improving palliative care in the community and assisting those who choose to die at home to facilitate this.

More carers trained in palliative care More capacity by Home First Not transferring customers to an external agency which can be very stressful and emotional when they are receiving pall care. as previously stated the only problem as a practitioner I have encountered has been forced by rural areas I have no negative experiences Additional funding, awareness of all agencies involved, their roles and what support they offer. Easy accessible contact details for each of them Awareness of all agencies involved, their roles and what support they offer for the customer to be as actively involved with in care planning as they would wish to be. Joint working between service to be closer giving and sharing info. Awareness of staffing issues, finances and budgetary constraints. More knowledge of support services and how to refer, closer comms with DN`s, less mess up hospital discharges from Addenbrookes, more link working with profs. Common paper process Free end of life service to the patient

- 321 -

Annexe 8: - Home First Questionnaire Analysis

17 Returns were received

Graph No: 1 - What is your role in the patient’s home?

1. What is your role in the patients home? Dressings, 2, 5%

When working at the hospital will meet new customers before discharge to check that every Continence thing is in place,, management, 2, 5% 1, 3% Personal care, 16, Meal prep, 10, 44% 27%

Medication, 6, 16%

2. Do you link with the Community Nurses?

Yes No 15 1

2a. If yes in what way?

Phone for support if concerned Dressings Catheters If a double up for re position of catheter Pressure sore care etc Sometimes we have to get the carers to meet with the DN

- 322 -

3. Graph No: 2 - How do you receive information about the patient and the care required before your shift?

3. How did you recieve information about the patient and the care required before your shift?

Team leader / Supervisor

Information sheet

Telephone calls

District Nurse

Team meetings

Folder (Green Card)

Named worker or ward staff

Other carers

Paper updates

0 2 4 6 8 10 12

3a. Are these methods effective?

Yes No 15 nil

3b. If no how can these be improved?

Sometimes effective but sometimes not enough info is passed on from hospital initially communication can always be improved more affective communication re charges sometimes effective but sometimes not enough info is passed on from hospital initially although could be improved to have allocated worker for that person who all enquires can go to on the ward if the care request is carried out on duty no one to follow it up

4. How frequently do you receive information from the community nursing team or other home care staff?

Home care staff frequently Nursing team very frequently When needed x 10

5. Would you say overall communication with the community nursing team or other home care staff was?

Average Good No Reply 7 8 1

- 323 -

6. Does the overall communication adequately describe the patients needs?

Yes Sometimes No Reply 8 1 3

6a. If no how do you obtain further information?

Phone the team office or out of hours We don’t always get full information from O of Hours Have to access when in the home I would check the computer recording, Contact ward staff or duty worker for allocated team

7. Graph No: 3 - How do you hand over to the community nursing team, other home care nurses and other home care staff after your shift?

7. How do you hand over to the community nursing team, other home care nurses and other home care staff after your shift?

Leave info in the Green card in patients home

Call the District Nurse

Call agency

Ring the team leader

0 2 4 6 8 10 12

8. Do you have any difficulties with handover?

Yes No 15 1

8a. if so what are they?

Not being able to contact the area team at ACS

9. Do you have lines of communication with the following professionals? GP, palliative Care Specialist Nurse, social services, agency staff, other,

GP SS Agency Staff Team Leader Palliative Nurse 9 8 4 3 2

- 324 -

10. Which professionals would you like more contact with?

OT Physio DN GP Palliative Nurse 5 3 2 5 3

11. Graph No: 4 - What action do you take if there is a medical problem with the patient?

11. What action do you take if there is a medical problem with the patient?

Team Leader/Manager 7 GP 13

Out of Hours, 4

999 / Ambulance, 6

11a. Which services will provide the assistance you need?

GP 999/Ambulanc Out of Hours Team Leader/Manager e 13 6 4 7

12. In your experience what are the challenges in caring for patients from ethnic minorities? Communication, religious beliefs, cultural beliefs communication communicatio communicatio Cultural n/a Blank n and cultural n religious beliefs beliefs, and cultural communicatio beliefs n sometimes 3 1 2 1 1 1

13. What support networks are available to you to help you care for palliative care patients from ethnic minorities?

Information sheet and supervisor 1 Information sheets, supervision 1 Support from team leader 1 Information and support from team leaders 1 Normally in Stowmarket, we don’t deal with any minorities 1 None 2 - 325 -

Most of before 1 n/a 1 Depends on the urgency of the care package when requested 1

14. How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide care for?

A lot A little 12 2

15. in thinking about the care of palliative and end of life care patients in the community setting, please indicate what you feel are the barriers to effective home care? communication and beliefs 1 communication, cultural beliefs 1 conflict family 1 contact with families 1 Don’t have any barriers, can 1 communicate with all clients, beliefs and food habits would be taken into consideration. Family conflict, respect, dignity 1 Not getting equipment sorted out quick 1 enough, it causes distress to other family members I find it hard to communicate of patients 1 regarding what to say at the end of life Need more training 1 The amount of care allowed for each 1 patient, needs not to be restricted when end of life

16. What do you think currently works well?

Being supportive and understanding Being at home with their family around When a patient has all the family around them Being at home with familiar surroundings & objects with the love and support of family & friends Being in their home environment Being supportive, intervals of care Family care Communication Team work Patience That I have cared for them and made them as comfortable as possible Good information equipment in home all set up before discharge

17. Please add comments for improving palliative care in the community.

More palliative care nurses for care and support to the family, and the nurses who are very kind to them On going support from professionals & friends & family More palliative care nurses for care and support to the family Needing enough time not to have to rush with tasks - 326 -

I would like someone to give a talk on looking after patients and how to talk to them Allowing time for care to be put in and not restricted Allowing time for care to be put in and not restricted. Having a team set up for palliative care some HF carers are not able to cope with palliative care patients due to personal reasons.

- 327 -

Annex No: 9 - Questionnaire Analysis – Care Homes

15 care homes responded

1. Is your care home - residential, nursing, dual registered?

Type of Care Home Number of responses Residential 7 Nursing 5 Dual Registered 3

2. Does your care home have dedicated palliative care beds?

Yes 1 No 14

3. Is your care home currently using, or developing use of the Gold Standards Framework? no 10 yes 4 No but working with local hospice to 1 develop LCP

4. Is your care home currently using or developing the use of the Liverpool Care Pathway? yes 7 no 8

5. Do you and your staff discuss with residents their care plan for the end of life? sometimes 5 yes 10

6. If yes or sometimes, are the residents relatives involved in this discussion?

Sometimes 3 yes 12

7. Do you document these discussions? yes 14 Did not answer 1

8. Do you have a system in place to ensure that all residents reaching the end of their lives have a documented care plan? no 2 yes 13

8a. If yes please describe how this system works

We have a plan of care that is reviewed regularly and updated according to care needs Pre admission paper work. Ongoing end of life paperwork reviewed at least every 6 months at service review and documented in notes We are currently working through an end of life wishes doc as we have previously not had anything in place. We like to talk to the residents and relatives and document this within the care - 328 -

plan so staff are aware. This is reviewed 6 monthly or when required. Based on what we know/have been told by resident, family , the care plan reflects their wishes, we Endeavour to ensure the persons preferred choice is always followed to the best of our ability. There are 6 monthly reviews that are carried out with the family and staff, this is discussed at that time, service user care plans are reviewed monthly and if significant changes are identified then this is documented and put into action as/when needed. We have an end of life care plan based no the LCP and work closely with Gp’s. All residents have a care plan which we extend for the end of life. We are in the process at the moment of updating our care plans across the 16 ACS Care Homes to have one care plan in situ. The end of life care plan arrangements is also under review2 Specific care plans for end of life that is implemented. End of life wishes discussed at 6 week review as part of their care plan starting LCP but Gp’s wont prescribe until needed Discussion with client, family /friends followed by documentation of discussion and any follow up queries. Consultation with GP & client & family is documented. This is all kept in front of care plan on forms designed for this purpose. Sometimes depending on the individual some residents are unwilling to discuss these issues use Bupa questionnaire and LCP we have a palliative form following the 12 principles of palliative care it has been written with input from clients and relations the information on this is then translated into a care plan at end of life

8b. If no please describe the challenges that prevent such a system being in place.

We would like to adopt the LCP but would need confidence in our GP surgery and assurance that this could be used in partnership to ensure robust comms and best outcomes for residents. Without this we are not currently confident in using the LCP I feel the challenges of getting this completed are that staff feel very uncomfortable about asking the questions and often families have not thought that far ahead. peoples reluctance to discuss end of life wishes can prevent this happening no actual system staff should write a plan but this is not always checked Gp’s not prescribing until symptoms change, then its often very difficult to get the drugs quickly Sometimes depending on the individual some residents are unwilling to discuss these issues 9 no replies

- 329 -

9. Do you have access to health and social care in the community? Please list those to which you have access

Graph. No: 1

- 330 -

10. In caring for residents at the end of their lives which of the following professionals do you have regular contact with in the community? GP, Community matron, social worker, out of hours GP, District nurse, other (please state)

Graph. No: 2

11. With which professional would you like more contact?

Graph. No. 3

- 331 -

12. How would the care home staff access health advice or support if they needed it in caring for a resident at the end of their life?

Graph. No: 4

Graph. No: 5

- 332 -

13. How would the care home staff access specialist palliative care advice or support if they needed it in caring for a resident at the end of their life?

During normal hours St Elizabeths Hospice, as before We would not as we don’t know how to as before Set up by GP prior to deterioration, out of hours set up by GP prior to deterioration District nurse During normal hours DN, Mac nurse, Out of Hours,? mac nurse, GP, out of hours mac nurse, GP Mac nurse, St Nichs Hospice as before Comm Matron, DN, GP, Out of hours GP service telephone hospice at home during normal hours hospice & GP, out of hours hospice

14. Have staff in the care home received training in palliative and end of life care?

Graph. No: 6

- 333 -

15. Do you feel that staff would benefit from more training in palliative care?

Yes = 13 No = 1

15a. If yes, please list the disease group or topics

Dementias 5 Cancer 5 End of life 4 Parkinson Disease 2 Palliative Care 2 Recording & Record keeping 1 Mental Health 1 LCP 1 Heart Disease 1 GSF 1 Diabetes 1 Dealing with breathing difficulties 1 Comfort 1 Alzheimer’s 1

16. Please indicate what you feel are the main challenges that are faced in trying to enable residents to die in the care home if this is their choice. Dying

1. GP`s & DN`s willing to undertake and support the LCP. 2. Quality training for staff identifying the need for quality recording. 3. Staffing levels. 4. Access for care homes to hospice support if staffing levels prevent someone from ending their days in the care home. 5. Access to quality GP support Out of Hours in relation to pain relief in particular staffing costs to have extra staff in to support dying person and family when needed Gaining professional assistance. As a residential home we can provide care but it is very reassuring to have a proof guidance and support. Ensuring the residents wishes are upheld, as on occasions relatives wish to change that different to what the resident has asked for. Budgets which do impact on choice Time, being able to sit with the resident during their last hours , giving family support prior to their family members passing away lack of staff, some times gaining the correct equipment e.g. rise and fall bed and air flow mattresses pain relief no nursing staff employed therefore have to rely on community nurses to supply this service If they’ve been in the hospice they want to go back when symptoms get worse. They often want to go to hospital if there are breathing difficulties staffing levels and skills to deal with a specialized area of care, especially associated family need and counselling etc no challenge all have the right to stay in the home, however not always able to contact other professionals for advice and support. obtaining necessary medication as have to do this via GP, prescription and finding a chemist who stocks this takes a lot of time in some cases resulting in delay in commencement of treatment lack of understanding from ambulance/on call doctors. Usually we ensure our clients wishes are adhered to.

- 334 -

17. In thinking about end of life care for your residents, what do you think at the time works well?

Person centered care planning which upholds the wishes and preferences of residents Good knowledge of the person, good relationship with the family, honest, open and supportive. Support of hospice at home Nurses, MC nurse to sit at night and regular GP when needed. Equipment available when needed. Pharmacy who has all meds and able to deliver. the standard of care we provide trying our up most to keep them comfortable, pain free and carry out their wishes. caring staff team committed to providing a quality service Being open & honest about what is going to happen, both with the staff and the family concerned. Being supportive to the staff and family during and following any death which occurs in the home, allowing staff to express their feelings at any time they need to. DN, GP support in Mildenhall remaining in their home with familiar staff consistent knowing staff to person who needs care, family involvement, key worker system, knowledge of person time spent discussing wishes/care They have their own room, visitors any time, overnight, food choice at any time no set routine High level of care given by caring staff advanced care planning correct assessment before admission cutting anticipated drugs for syringe driver written up in advance the palliative care from which enables people to open the subject up for discussion and mutual decisions with family’s understanding can be reached. It ensures we know what they want.

18. Please indicate what you feel are the main challenges that are faced in trying to enable residents to die in the care home if this is their choice.

the last experience was excellent and all services were very supportive I am trying to promote a palliative care team leader to assist with staff knowledge and training. Colleagues are currently taking part in this scheme through St. Elizabeth Hospice in Ipswich and we are trying to access this. Extra hours at the time it is required, no one should die alone or others loose out because not enough staff, staff dilemma at these times giving anybody who shows interest in palliative care and end of life care the opportunity to do some training. would really like to have more staff training and extra hours to support the staff in caring for the person correctly at end of life stage. increase in care hours to provide more 11 care, more training for staff support groups for staff need proactive prescribing from GP`s to facilitate symptom control, especially at night and weekends, when its difficult to get drugs. we are at present trying to develop a palliative care plan specific to a Nursing Home setting more specialist input, more free training, also training days with funeral homes to give insight in how to advise and reassure relatives. improved access to palliative care drugs as sometimes a delay in symptom control as GP`s are slow to prescribe and difficult to obtain Training offered needs to be free so often NHS get it free and we have to pay a lot. Yet we are the ones providing the service, we need the training.

- 335 -

Annex 10: Questionnaire analysis – East of England Ambulance Trust

Questionnaires were sent out to all crews working in the Suffolk area. A total of 60 questionnaires were returned.

1. What is your position within the East of England Ambulance Trust? Graph No: 1

Number of Responces Paramedic

Technician

26 Emergency Care Assistant 2 3 Other 13

20 1 Not Listed

Emergency Care Practitioner

2. How long have you worked for the Ambulance Trust, including other NHS ambulance trusts?

All 60 respondents replied to this question:

Less than a year 6 15 years 15 510 years 19 Greater than 10 years 20

3. How do you know a patient has palliative care needs or is a known end of life patient?

All 60 respondents replied to this question:

Out of Hours handover form 6 Informed by control on call allocation 34 Patient or relatives state on arrival 37 Other (please describe) 17 • May not know at all • Sometimes stated on worksheet

4. How are you informed of a patient’s resuscitation status?

58 of 60 respondents replied to this question:

Not informed 14 Written form available in patients home 19 Informed by control on call allocation 23 Patient or relatives state on arrival 24 Other 11 - 336 -

5. What healthcare professionals do you have regular contact with?

All 60 respondents replied to this question:

General Practitioners 29 OOH GP 25 Palliative Care Teams 9 Hospice Teams 24 Hospital Staff 56 None/Other 2

6. Would you like more contact with other healthcare professionals?

58 of 60 respondents replied to this question:

Yes 49 No 9

7. What training have you received on palliative care or end of life care?

All 54 respondents replied to this question. 21 of the 54 people respondents stated that they had not received any training. 14 of the 54 respondents stated that they had received very little and/or very basic training covering very basic areas. The remaining respondents stated the training they had been given regarding different areas.

8. What training would you benefit from? Graph No: 2

14 12 10

Number of Responces 8 6 4 2 0 Hospice No DNAR Knowledge

- 337 -

Annex No: 11

Questionnaire – District Nurses

22 questionnaires were completed and received.

Below we present in details the answer to the questions.

1. At any one time, on average, how many patients do you have on your caseload?

The majority of the respondents have a caseload ranging from 50 to 200.

No. of patients Number of responses 50 or less 5 51 – 100 7 101 – 199 7 200 – 299 1 300 399 1

N.B One respondent did not answer this question.

2. At any one time, on average, how many of these are in need of palliative care?

No. of patients in need Number of responses of palliative care Less than 5 7 5 – 10 8 11 – 20 4 21 – 50 3 51 100 0

3. Approximately per month, what percentage of your time is allocated to palliative care patients?

% of time spent on Number of responses palliative care patients Less than 5% 1 5 – 10% 6 10 – 20% 7 20 – 30% 4 30 – 40% 1 40 – 50% 1 50 – 70% 0

N.B One respondent did not answer and another stated ‘too variable to say’.

4. If more time was allocated to meet palliative care patients’ needs, how would you use it?

Visit patients more often 15 Spend more time assessing and care 15 planning Spend more time educating carers 8 Spend more time organising other services 6 - 338 -

Other: Depends on patient’s wishes Other: Nonpalliative patients receive less time Other: Bereavement visits to family Other: Allocate longer when visiting but not necessarily visit more often Other: All of the above depending on the patient and their needs

5. Do you have regular meetings with the GP to discuss the needs of palliative care patients?

The majority of the respondents have a regular meeting with their GP (17) but some do not (5).

5a. If yes, how frequently?

Frequency Number of responses

Monthly 6 6 weekly 1 23 Monthly 4 As required 1

Some respondents didn’t answer.

6. Is this about the right frequency?

16 of the respondents felt this was the right frequency. The remaining 5 felt it wasn’t and that the meetings should be more regular. One stated N/A.

7. Does the GP practice you mainly work with use the Gold Standards Framework?

18 respondents answered yes to this question. Two answered no. (2 did not answer).

8. If the practice you mainly work with does use The Gold Standards Framework, has this enabled better communication to you about palliative care patients?

13 of the respondents answered yes, 3 answered no, 3 answered N/A and 3 did not answer. a) If no, please explain why you feel that communication has not been improved.

• In our opinion it is not used (GSF) correctly. Patients are not discussed in reflective practice. • We do not use the documentation to its full effect, the GSF really only creates a principle of communication, we already communicate satisfactorily, although there is a variation between the two practices served. • The Macmillan nurse and I were responsible for introducing GSF to the practice. We share some time within the PHCT meeting for discussion and occasionally meet with GP involved in GSF but she is parttime. Time constraint is main issue. • Sorry I am happy to discuss this with you but the RRAPS nurses work with GPs all over the west of Suffolk and do not communicate with doctors unless required for a specific patient.

- 339 -

9. If you could improve something in the way of communicating with the GP, what would that be?

The answers given were:

• Time consuming writing up end of life drugs per our paperwork. Need better system. • Regular meetings. • Communication generally good. GPs are accessible and supportive. • Nominated GP to coordinate all palliative care or at least continuity of care per patient (see same patient) • Some surgeries/GPs are not always helpful or willing to set up palliative care drug boxes, especially for over the weekend. • This is going to sound very cynical but the quality of the communication depends on the willingness and attitude of the GP themselves. I feel that some GP services have given greater focus to activity that raises practice profit. They require greater education on preemptive measures and the importance of the therapeutic relationship that many people need. • Request individual GPs inform us of new palliative care patients. • Having a regular separate meeting with GPs purely to discuss palliative care patients. • Planned monthly meetings – recently these seem to have ceased. • More information from GP. • Most of our GPs are very approachable and especially when dealing with palliative patients.

10. Are you always informed when a palliative care patient on your caseload is discharged from hospital?

Most respondents said yes (14) but 7 did state that they were not told (one answered N/A).

11. Would you like to be informed of every discharge of palliative patients care patients on your caseload?

Most of the respondents said they would like to be informed (19) with only one stating No.

12. When you are informed that a palliative care patient has been discharged from the hospital, what form of information do you receive?

Form of information Number of responses

Written 9 Verbal 0 Written & Verbal 13

13. In most situations does the communication (written or verbal) adequately describe the palliative care patient’s needs?

11 of the respondents answered yes and 11 replied sometimes. None said no. a) In you answered no or sometimes, what more information do you usually require?

Answers given were as follows:

• What patient and family know about prognosis • Treatment required. Symptom control. Patient’s understanding/acceptance of condition. Carer/relative support available

- 340 -

• Situation at home, support, medications, current symptoms and management. Future plans – treatment and preferred place of care/priorities • Diagnosis/family/contact numbers/medication/prognosis care package/other agencies involved/patient’s understanding of diagnosis/correct equipment at home • Sometimes the information is incorrect or very scant. I had a referral the other day which told me the lady lived with her husband who was her main carer, when I knew she was a widow and lived alone • More indepth information about care, medication and next of kin • Sometimes very little information is given and we need to follow up the referral • Discharge summary • Does patient wish to stay at home? Diagnosis/prognosis. Is patient aware of diagnosis/prognosis

14. In most situations does the hospital communication provide enough information regarding the type of home care that has already been arranged?

9 of the respondents said yes there was enough information, 9 said sometimes and 4 said no (1 did not comment).

15. After a palliative care patient is discharged from hospital do you access the documents sent to his/her GP such as the discharge summary and prescription form and the consultant’s letter?

10 of the respondents answered yes to this question, 10 answered sometimes and 2 answered no. a) If no, would it be useful to be able to access these documents?

8 of the respondents answered this question and they all said yes.

16. Sometimes a number of professionals coming from different organisations are involved in providing care to palliative care patients in the community. Are you informed of their visits?

4 of the respondents answered yes, 13 answered sometimes and 5 answered no. a) If no, how could this be improved?

The following comments were made:

• A complete summary of all involved and their roles • By ensuring that DN attached to patients practice is always informed • I have asked for Hospice OT team to let me know when they are visiting my patients – communication has improved • Perhaps a fax? Just to inform of date, time and reason for visit – to then be entered into office caseload GSF folder • To liaise with all involved phone call is all that’s needed • Documentation – ongoing communication documents in home notes • All on the same System One domain so can access notes so avoid visiting

17. Are you always informed when additional services of home care are arranged by someone else?

The majority of the respondents are not informed (10) or only sometimes informed (9). Only 2 respondents said yes.

- 341 -

18. Generally, who is a patient told to call when they need help: a) During the day

The majority answered District Nurses and GP with a few replies also adding Hospice, Macmillan, Community Matron and GP. b) In the evening

The respondents mainly answered Hospice at Home and Out of Hours, with oncall GPs, District Nurse evening service and Rapid Response also being mentioned. c) Overnight

Hospice at Home and Out of Hours service were the main answers. d) At the weekend

District Nurses and Hospice at Home were the majority stated. District Nurse and out of hours GP were also mentioned.

19. Thinking about palliative care out-of-hours, what do you think works particularly well?

Most of the respondents answered stating Hospice at Home works well. Good communication, referral to District Nurses, Marie Curie and Macmillan were also mentioned as offering good support. One respondent answered ‘none’.

20. Thinking about palliative care out-of-hours, what would you wish to improve?

There were a variety of answers, as follows:

• They have now set up number which will help patients and us. Out of hours gave access to written information from surgery consultations in the day. • Better communication between own GP and out of hours GP • Availability of night sits • Communication after visiting – Hospice at Home good but out of hours doctor’s reports don’t always come to us • SF GP visit need a quick response • Access to own GP • Additional available support like Marie Curie freely available out of hours to support carers/relatives • Messages for oncall GP service are not always forwarded to DN service promptly • 24hr palliative care support from nurses • Hospice at Home team in all areas • More night nurses from Marie Curie • I have found the above services to be quite available OOH (weekends) • Weekends through Harmoni • When drugs need to be altered and collected from a pharmacy the process takes too long • More staff specialising in palliative care • Specialist nurses or rapid response services • Access to syringe driver drugs

- 342 -

21. Do you feel that the patient notes left at the patient’s home are appropriately designed to record all palliative care needs?

17 of the respondents answered yes, 4 answered no (one did not answer).

22. Do you feel that the patient notes left at the patient’s home are appropriately designed to record interventions and outcomes of visits by different professionals?

14 of the respondents answered yes, 7 answered no (one did not answer).

23. Please write down any changes in the above document that you would like to see

Liverpool Care Pathway featured in a few of the suggestions. Other answers included:

• I would prefer that all staff administering treatment/advice to patients enter record in 1 set of notes carers should also be encouraged to use the notes to voice concerns • Introduction of pathways, PPC where appropriate and encourage all professionals etc to document in one record • I think that each professional team should have their own paperwork which attaches and links to the basic assessment document. This could then be more easily accessed and input identified. • Clip file and loose sheets not very successful often become muddled. More sturdy folder. Like consecutive entries to view progress. • Perhaps a different coloured folder to indicate 'palliative care' ? Pink • GPs should write in notes • Not everyone writes in the nursing documentation. This would be very useful. • Implementation of LCP • Sorry we are not familiar enough with the documentation to be able to comment

24. A number of health and social care professionals (including those from the voluntary sector) visit a palliative care patient to provide services. Which of these: a) Usually contribute to the patient notes left in the home (please list)?

14 respondents answered this question and the majority noted that Marie Curie and Hospice at Home contribute to these notes.

Health Care Professional Number of answers District Nurses 2 Marie Curie 15 Hospice at Home 11 Macmillan 7 GP 4 Community Team 1 Physio/OT 8 Local healthcare team 4 Rapid Response 1 Specialist nurses 1

- 343 -

.b) Usually keep their own separate notes in the patients home (please list)?

The answer most given was Care agencies.

Health Care Professional Number of answers Hospice at Home 1 Community Team 1 Physio/OT 1 Care agencies 13 Social Services 1 Crossroads 1 Home Care 3 Private Carers 1

c) Do not usually contribute to documentation left in the home (please list)?

The answer most given was GP.

Health Care Professional Number of answers LCT 2 Hospice at Home 2 Macmillan 4 GP 8 Hospital 1 Crossroads 1 Rapid Response 1 Social Care 1 Carers 4 Care Agencies 1 Podiatry 1

25. Do you have easy access to any of the following specialist nurses for palliative care patients?

All 22 respondents answered this question and the answers are categorised in the table below.

Option: Numbers answering Numbers answering Numbers answering ‘Yes’ ‘No’ ‘Never required’

Palliative: 21 1 0

Heart 15 2 5 Disease: Respiratory 15 4 3

Diabetes 13 6 3

Mental 7 11 4 Heath:

- 344 -

26. How do you gain access to specialist palliative care advice?

The majority of the respondents would contact the Hospice/Hospice at Home and Macmillan.

During normal office hours Number of responses Out of hours

Hospice 7 6 Hospice at Home 9 11 Macmillan Team 9 4 GP 1 1 Oncology/Hospital 4 1 By telephone 6 4 Marie Curie 1 1

27. In your experience what are the challenges in caring for palliative care patients from ethnic minorities?

Most of the respondents answered that it was all three elements that provide challenges, (Communication, religious beliefs and cultural beliefs) although communication was the main issue.

28. What support networks are available to you to help you care for palliative care patients from ethnic minorities? (e.g. interpreter services; staff training in cultural awareness; palliative care outreach workers)

Service Available Number of responses Language Line 4 Relatives 2 Interpreter service 3 Hospice 1 Not usually required 5 Don’t know 4 Colleagues 1

29. How much do you think you would benefit from training in cultural awareness, and in the end of life religious and cultural beliefs of the ethnic groups that you provide care for?

12 answered ‘A Little’, 7 answered ‘A Lot’, 1 answered ‘Not at all’ and 2 did not answer. So the majority felt training would help a little.

Education needs

Please answer the following questions based on your perception at this time.

Circle the number from 0 – 10 that best describes your perception and experience, where 0 indicates ‘not at all’ and 10 indicates ‘extremely effective’.

If the item is not applicable for your practice, circle NA.

In relation to patients with palliative care needs how effective do you think you are in:

- 345 -

30. Care of patients with fatigue

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 1 1 4 9 4 2 of responses

31. Care of patients with sleep changes

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 2 5 6 7 1 of responses

32. Care of patients with dry mouth, change in food tastes, or appetite changes

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 2 4 8 4 2 1 of responses

33. Care of patients with constipation or diarrhoea

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 3 2 5 10 2 of responses

34. Care of patients with nausea or vomiting

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 2 2 3 9 5 1 of responses

35. Care of patients with breathlessness

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 1 5 6 7 1 1 of responses

36. Care of patients in pain

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 2 3 4 11 2 - 346 -

of responses

37. Care of patients with syringe drivers

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 1 3 8 8 of responses

1 answered – “Don’t deal with”

38. Care of patients with impaired tissue integrity

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 1 1 3 11 5 of responses

39. Care of patients with terminal agitation

Number NA 1 2 3 4 5 6 7 8 9 10 circled Number 1 3 2 3 6 7 of responses

40. Have you had training in palliative care?

17 answered Yes, 5 answered No.

41. Do you feel you would benefit from more training in palliative care?

Everyone answered Yes (21), except for one respondent who didn’t answer the question. a) If yes, please list the disease groups or topics for which you feel you need more training?

Various answers were given (see below). Quite a few mentioned a general update on a regular basis being useful and more information on syringe drivers.

• Regular update of all symptom management issues. At present more specifically I would like to increase my knowledge in advice for fatigue and breathlessness. • Fatigue, disease progression • Cerebral • Updates on medication • Heart failure. Dementia • Symptom management and how/what treatments work and how. Nausea/vomiting, pain, agitation, breathlessness • Regular updates generally • Renal cancers, lymphomas, spirituality • General update training. Pain control, drug updates, breaking bad news, after death support • Syringe drivers – how many types of drugs to be put in one syringe driver. Update knowledge of how to deal with family when death is imminent - 347 -

• Liverpool Care Pathway. Syringe drivers. Common drugs used in palliative care. Dealing with patients and relatives in denial re death/end of life • Syringe driver, COPD, cardiac failure

42. How effective do you think you are in addressing patient and family concerns regarding psychological issues at the end of life?

1 stated ‘Very Effective’, 15 responded ‘Effective’, and 5 said ‘Average’ (one didn’t answer). a) How much do you think you would benefit from additional training in these areas?

12 stated ‘A Lot’, 9 said ‘Little’ (one didn’t answer).

43. How effective do you think you are in addressing patient and family concerns regarding social (e.g. relationship, conflict) issues at the end of life?

1 respondent stated ‘Very Effective’, 12 ‘Effective’ and 8 ‘Average’ (one didn’t respond). a) How much do you think you would benefit from additional training in these areas?

13 respondents stated ‘A Lot’ and 8 said ‘Little’ (one didn’t answer).

44. How effective do you think you are in addressing patient and family concerns regarding spiritual issues at the end of life?

6 said ‘Effective’, 15 ‘Average’, and 1 ‘Not Very Effective’. a) How much do you think you would benefit from additional training in these areas?

14 answered ‘A Lot’ and 8 said ‘Little’.

45. In thinking about the care of palliative care patients in the community setting please indicate what you feel are the barriers to effective home care? Out of hours, not enough nursing palliative care nurses Marie Curie nurses and restrictions on our budgets Continuity of GP care Lack of communication between MDT, Rapid access to palliative drugs and drug charts, Out of hours speed of visits, communication, urgent hospital bed Staffing levels are not at the level required for palliative care communication with other carers Time available to spend with patient as you may be only trained nurse on duty Family have declined visits and then patient - 348 -

suddenly deteriorates and they are not known to the team Unrealistic wishes/demands for treatments/care. Patients/family perception of current and future needs Unacceptance of individuals needs of increased care, decrease in health status Lack of continuity of care Lack of discussion re what patient wants to happen (eg die at home, die at Hospice) Fear of addressing such issues Lack of resources (day and out of hours) Confusion between role of HAH & MACS Limited resources. Not always able to access a Marie Curie nurse when needed. Not always able to get Macmillan support due to their workload/demands GPs not always prepared to do preemptive prescribing adequately Lack of social care our practice area is very rural Availability of Marie Curie at times. Barriers put up by families. Occasionally GPs not been supportive in ensuring that 'end of life' medication is prescribed got the patient, especially over weekends/bank holidays. We still lack adequate care to maintain and support people who live alone or do not have adequately family support they need. The carers can be brilliant but are not always appropriately trained for end of life care. At a critical time in their lives people often lack the additional support that could make all the difference, often with practical tasks like cleaning and shopping. ACS are often slow to respond and struggle to meet people's needs. We often have to maintain people with health services but this can't be sustained for long enough and then patients have to be transferred to other agencies which causes distress. As a DN, I often have to work late and give a lot of myself to maintain a good level of support in the last days of life, covering a large geography and busy caseload, often more than one person - 349 -

needing this level of support Seriously effect our own health and has led to great stress on the team at peak times. Another barrier I have observed is the adequate preparation of the patient and family for a terminal phase in their disease, we are often met with patients who have been given false hope of delayed chemo, while they 'get stronger', when it is apparent that the erpson is in fact deteriorating and needs to be allowed the dignity of a gentle truth? Not always being aware of palliative patients until last stages. Communication between consultants and nursing DN teams Hospice at Home carers are excellent but not enough of them! General carer availability poor in this area and their training is not always appropriate for this type of patient Personal lack of knowledge of available services/benefits Obtaining drugs for syringe drivers at short notice. Getting equipment in a timely manor from CES Continence pads can take ages to access. Getting equipment in at short notice if bed is needed urgently always causes a problem. Sometimes unable to get Marie Curie night nurse when family are in desperate need. Gp’s not adhering to the Liverpool Care Pathway out of hours service is very poor Few clinicians have the time to intensely manage this cohort Delivery of equipment. Lack of motivation of GPs in delivering palliative care (does vary between surgeries) Lack of time. Lack of communication between specialties Communication between DN & Hospice at Home nurse has been altered by having a third professional being involved

- 350 -

46. In thinking about the patient’s palliative care journey what do you think at this time works particularly well? Regular visits and input before patient

deteriorates. Building up a relationship with individual and

family to explain services available, to allay fears Liaison HAH/DN commitment Communication with GPs and other specialist

services are good Experience in palliative care means we access

appropriate services quickly Supportive GPs

Excellent liaison/support from hospice and

Macmillan nurses (also at weekends). Dedicated Marie Curie nurses. Voluntary

agencies. Social services Good communication between disciplines i.e

Hospice at Home, Macmillan, Marie Curie We get involved very early after diagnosis if

possible which gives us an opportunity to get to know the patient and the family before end of life situations arise. District Nurses input and support. District Nurses and evening service plus access

to Marie Curie. Hospice at Home service. Great liaison with hospice consultants directly.

DNs, hospice at home team, GPs, care agencies Patients wishes to stay at home fully supported.

Symptom Control. Family/Patient support. Liaise and refer to relevant agencies. Interpersonal relationships between patient

relativesnurse. Hospice at Home symptom control Macmillan services. Hospice at Home.

Communication with health professionals Working closely with Hospice, particularly home

team

47. Please add here any comments you have for improving palliative care in the community. Often needs earlier introductions to patients Sometimes need more availability of carers to help to support in early unpredictable terminal phase. One named person to liaise with hospital discharges see the patient and carers/family before discharge liaise with required services - 351 -

following an assessment of needs Contact family regularly. Keep all documentation relevant and up to date and in the home. List of contact numbers for families/carers for all out of hour needs/concerns Allowing us to use Marie Curie service more often than 2 nights before going to continuing care. Central point to obtain emergency stock of medication for palliative care

Macmillan nurses are restricted in their numbers /available time and have to use referral criteria

More education and support for staff providing care Perhaps there needs to be a 'death plan' rather like a 'birth plan' to follow, although this might be particularly difficult to address. Investment in Macmillan team to enable them to cope with caseloads and therefore able to support DN teams more effectively More hospice carers to support patients where social care is difficult to access. Local services, ie Hospice, outreach clinics to reduce distance that people have to travel Thank you for asking for our comments. Really important to discuss with us. Hospice at Home Improved documentation available to all members of the MDT Hospice at Home carers increase in numbers.

More Marie Curie staff. Plenty of time! I would like to attend a training session or basic palliative care course. I often find myself calling other members of the team/other agencies for assistance/reassurance/advice. I would like to feel more confident. Communication with Macmillan nurses could be improved. Being able to access equipment from CES as per the contract not 8 days later as they don't have a van and by this time patient has died. Fast access to hospital bed and mattresses and hoists. Night sitting service at short notice. Patient's leaflet what to do after death. More time to spend with patient and family.

Leaflet what to do after death. Many patients die at night. Support telephone numbers 'chat line'.

- 352 -

Allowing us to use Marie Curie service more often than 2 nights before going to continuing care Central point to obtain emergency stock of medication for palliative care More education and support for staff providing care Perhaps there needs to be a 'death plan' rather like a 'birth plan' to follow Investment in Macmillan team to enable them to cope with caseloads Improved documentation available to all members of the MDT I would like to attend a training session or basic palliative care course. Communication with Macmillan nurses could be improved. Fast access to hospital bed and mattresses and hoists Night sitting service at short notice Patient's leaflet what to do after death. Leaflet what to do after death. Implementation of LCP

- 353 -

Appendix 12

NHS CONTINUING HEALTHCARE PATHWAY CCA AND FAST-TRACK Consideration given relating to NHS Continuing Healthcare pathway

Insufficient time to undertake NHS Undertake a Checklist for NHS Continuing Care Assessment due to Continuing Healthcare. If a full poor medical condition. Therefore a Assessment for NHS Continuing FastTrack Tool for NHS Continuing Healthcare is required. Healthcare is completed by Doctor/Nurse. Ensure clear explanation of basis for decision. Give Letter and copy of Checklist to individual and/or their Upon completion of FastTrack Tool representative. the case is submitted to the NHS Continuing Healthcare Team who validate recommendations. Retain copy of Letter and Checklist. Place with Continuing Care Assessment documentation.

Undertake Continuing Care Assessment with all members of Multidisciplinary Team contributing. Complete the Decision Support Tool making recommendation regarding eligibility.

Upon completion of Continuing Care Assessment and DST the case is submitted to the NHS Continuing Healthcare Team who validate decisions.

- 354 -

ANNEX No: 13

GLOSSARY OF TERMS: A&E Accident and Emergency AAU Acute Assessment Unit ACS Adult and Community Services AHP Allied Health Professions BME Black Minority Ethnic Ca Cancer CAB Citizen Advice Bureau CCNS Community Clinical Nurse Specialists CES Central Equipment Stores CFR Community First Responder CHC Continuing Health Care CHT Community Hospice Team CHCF Continuing Healthcare Funding CIA Commissioning Ideals Alliance CMHT Continuing Healthcare Funding CNN Community Neurological Nurse CNS Clinical Nurse Specialist CODU Clinical Observation Decision Unit COPD Chronic Obstructive Pulmonary Disorder CPN Community Psychiatric Nurse CQC Care Quality Commission CVA Cerebral Vascular Accident DN District Nurse DNAR Do No Attempt Resuscitation Drs Doctors EAU Emergency Assessment Unit ED Emergency Department EIT Early Intervention Team ENT Ear Nose and Throat EOL End of Life FTE Full time equivalent GSF Gold Standard Framework H @ H Hospital at Home HCA Health Care Assistant HCP Health Care Professionals HSPCT Hospital Specialist Palliative Care Team IDPT Integrated Discharge Planning Team IPU Inpatient Unit LCP Liverpool Care Pathway LES Local Enhanced Service LOS Length of Stay MCCC Marie Curie Cancer Care MCDN Marie Curie Discharge Nurse - 355 -

MCNS Marie Curie Nursing Service MDT Multi Disciplinary Team NHS National Health Service OOHs Out of Hours OTs Occupational Therapists PFT Patient Flow Team PPC Preferred Priorities of Care PRN As needed PTE Part time equivalent RRAP Rapid Response Admission Prevention Team RRT Rapid Response Team SALT Speech and Language Therapy SCH Suffolk Community Health SCRT Suffolk Community Refugee Team SNHC St Nicholas Hospice Care SOB Shortness of Breath SPC Specialist Palliative Care TCT Total Care Team TTO/TTAS To Take Away UTI Urinary Tract Infection WTE Whole time equivalent

- 356 -