Closing the Gaps in Children's Palliative and End of Life Care

Gap Analysis and Mapping 2017: Closing the Gaps in Children’s Palliative and End of Life Care.

Informing our strategy.

Executive Summary

One chance to get it right – Are we getting it right?

Fraser et al 2015 set out an overarching vision for the Yorkshire and Humber region for specialist children’s palliative care (SPPCY report). This current document is about making that vision a reality. It sets out the case for service transformation to ensure that there is an equitable high quality children’s palliative care service for all those who need it regardless of geographical location or diagnosis.

In the region there are estimated to be in excess of 3740 children living with life-limiting or life- threatening conditions and of these approximately 270 die each year. Children with life-limiting conditions (LLC) often require numerous hospital admissions and, in the locations where community nurses are not available 24 hours a day 7 days a week, there is an increased risk of additional, unnecessary hospital admissions, especially towards end of life. This may not be what children and their families want and it has a financial cost to the NHS which could be avoided. The cost of a hospital admission for a paediatric critical care bed ranges from £849 per day to £4824 per day (NICE 2016). Additionally there is social, emotional and financial cost to families, including loss of working days and income as well as the psychological distress to the child and family. However, it is recognised that there are times when a hospital stay is unavoidable and necessary.

Currently high quality respite and palliative care is available to babies, children and young people with life limiting conditions who have been referred to one of the 4 children's hospices in the region: Bluebell Wood, St Andrews, Martin House and Forget Me Not Hospices. The ambitions outlined in this strategy is to improve services for those children who do not have care provided by the hospices, or whose families chose to have care at home where both hospice and community care can work side by side. To support these ambitions it is necessary to have a managed clinical network with a network coordinator to support the clinical and educational activities. The current network coordinator has been funded for 2 years by contributions from the 4 hospices and from Leeds CCG but ongoing funding of a managed clinical network and the network coordinator is needed to continue to grow the network.

There are geographical gaps in the provision of funded 24/7 out of hours and end of life (EOL) community nursing care across the region. There is also a diagnosis lottery with good specialist nursing cover for children with cancer but with no such service for others. This strategic document sets out the need for change and the need to close the gap in services. The vision is underpinned by the principles set out in the Ambitions document (2015) and NICE Guidance 2016 (NG61).

The strategy aims to develop equitable palliative care across the region. It will involve CCGs and STPs working with provider services across a large geographical area to plan, coordinate and deliver services to a large population of babies, children and young people, as recommended in national guidance. The strategic document describes the current service provision and sets out how an equitable, high quality service can be achieved by collaboration and by putting the needs of children and families at the heart of the creative changes in the way services are funded and delivered.

GLOSSARY

LLC Life Limiting Condition

LTC Life Threatening Condition

EOL End of Life

YHCPCN Yorkshire and Humber Children's Palliative Care Network

CCN Children's Community Nurse

TfSL Together of Short Lives

NICE National Institute for Clinical Excellence

CCG Clinical Commissioning Group

STP Sustainability and Transformation Partnership

CHOON Children's Haematology and Oncology Outreach Nurse

DGH District General Hospital

SPPC Specialist Paediatric Palliative Care

MCN Managed Clinical Network

CYPACP Children and Young Person's Advanced Care Plan

Contents Page

Vision and Recommendations 5

Proposed Model of Service Delivery 7

YHCPCN 9

Background 11

National Context 12

Regional Context 17

What do Children and Families Tell Us? 25

Mapping Background 27

Mapping Results and Data 28

Conclusions 36

References 37

Appendices 39

Appendix 1: Development of the strategy

Appendix 2: Current Service Mapping Proformas sent to NHS Trusts

Appendix 3: Current Service Mapping Proformas sent to Hospices

Appendix 4: List of CDOPs returning data

Appendix 5: Views of the Professionals

Appendix 6: Hospice Service Provision

Appendix 7: Results of the TfSL Clinical Commissioning Group Survey (Yorkshire/Humber)

Vision and Recommendations

Vision

Yorkshire and Humber Children’s Palliative Care Network (YHCPCN)

To close the gap and ensure that every child with a life-limiting condition has access to high quality 24/7 children’s palliative care wherever, however and whenever it is needed.

Mission Statement

The aim of the Yorkshire and Humber Children’s Palliative Care Network is to develop an appropriate and adaptable model of care for all babies, children and young people with life-limiting and life- threatening conditions across the Yorkshire and Humber region, according to need. The focus is to provide choice to families and reduce variation in palliative and end of life care by working together to raise standards for all.

Purpose of YHCPCN

 To develop a regional strategy to improve provision of palliative care services for babies, children and young people.  To identify gaps and challenges in service provision and work towards filling these gaps  To quality assure the provision of children’s palliative care services  Through the Clinical Network to provide a sharing and supportive forum for professionals working in children’s palliative care and contribute to the evidence base in this area  Through the Education and Workforce Group to facilitate training and workforce development in children’s palliative care  To explore and encourage cross boundary working and sharing of good practice and expertise  To give children, young people and their families a voice and opportunity to influence palliative care services  To establish effective links with relevant commissioning networks  To represent Yorkshire and Humber children’s palliative care nationally and lobby for change where it is needed

Proposed Model of Service Delivery:

A "hub and spoke" model is to be developed to provide full 24/7 care across the region, with the two tertiary centres and the four Hospices acting as centres of excellence hubs and working closely with District General Hospitals (DGHs), GP’s, Children’s Community Nursing (CCN) teams, Children's Haematology and Oncology Outreach Nurses (CHOONs), Helena Teams and special schools within their area. This will enable real choice, transfer to ‘preferred place’ of death when required and a 24/7 medical advice line for professionals caring for patients not under the care of one of the hospices. It is anticipated that it will take several years to achieve the full model therefore a phased approach is proposed below which would require co-commissioning between the current service providers and the CCGs/STP’s across the Region.

Phases of development:

Phase 1. To establish a managed clinical network for children’s palliative care services in Yorkshire and the Humber with a medical and nursing lead for the region and with secured funding for the network coordinator. Where possible clinical guidelines will be shared across services and organisations for increased efficiency and to improve consistency of patient management as patients move between services.

Phase 2. To develop a hub and spoke model of delivering children’s palliative care with an identified clinical lead for each hospital and hospice (14 NHS Trusts, 4 Children’s Hospices) in Yorkshire and the Humber.

Phase 3. To work towards establishing a palliative medicine team in both Sheffield Children's Hospital and Leeds Children's Hospital as required in the NICE Guidance 2016.

Phase 4. To establish a 24/7 medical advice line for professionals in the region caring for children at end of life or with complex symptom management problems. This would initially be a pilot project requiring evaluation and therefore would necessitate the development of a Children’s Palliative Care Register.

Recommendations:

 Include Children’s palliative care/EOL Care work stream in all 3 STP’s across the region to plan for and provide resources to deliver high quality person-centred care to all children and young people with LLC  Identify all babies, children and young people with LLC/ LTC across the region  All babies, children and young people with a life-limiting condition to be offered the opportunity to complete an active Children's and Young Person's Advanced Care Plan (CYPACP)  Ensure all infants, babies, children and young people with a life-limiting condition have high quality end of life support in their preferred place of care  Ensure local services are safe and sustainable to react to support families when and where required  Provide 24/7 support (nursing, pharmacy, SPPC) in all locations when and where required  Ensure services are adequately funded to meet the NICE guidelines

YORKSHIRE AND HUMBER CHILDREN'S PALLIATIVE CARE NETWORK (YHCPCN) 2018-2023

Introduction

The Network is working towards becoming a fully funded Managed Clinical Network (MCN). This will ensure that there is clear and transparent governance structures in place and improve consistency in service provision across the region. The network will produce guidelines and pathways which ideally will be endorsed by the NHS trusts, the hospices and the community teams across the region. It is envisaged that each provider organisation designates a palliative care lead/ liaison representative to attend the quarterly network meetings. The MCN is made up of 3 groups which meet quarterly and a non-medical prescribing group which meets 3 times a year:

 An Executive Committee which oversees strategic development and implementation and monitors progress,  A Clinical Forum which is open group for any network member to attend. Membership of the Network is open to any health care professional with responsibility for babies, children or young people with a life limiting condition  A Workforce and Education forum - also an open group for any network member to attend.  A non-medical prescribing group which meets regularly to discuss advances and developments in non-medical prescribing and provide a peer support function.

The Clinical Forum aims to provide coordinated clinical leadership, promote effective collaboration between organisations and professionals working in children’s palliative care. This will ensure the best use of resources, facilities, knowledge and experience to improve the quality of care and outcomes for children. The Clinical Forum will aim to:

 Develop standards of clinical practice and clinical pathways in children’s palliative care  Audit the developed standards  Share best practice in children’s palliative care through themed meetings  Enable members to bring difficult/complex cases for discussion in a safe confidential forum for advice/support  Report any clinical service issues that arise on clinical care to the YHCPCN executive and Network  Develop relationships with CDOP panels to gather data appropriate to CYP PPC that could be shared at network meeting annually

The Workforce and Education Forum is in place to identify, develop and influence multi-professional education and workforce planning for children’s and young person’s palliative and hospice care across Yorkshire and the Humber. The group plans workshops, an annual conference and other training resources such as e-learning and a modular course in children’s palliative care.

Background - Why does Palliative Care matter?

There are estimated to be just under 50,000 babies, children and young people (aged 0-19 years) living with a life-limiting condition (LLC) or life-threatening condition (LTC) in the United Kingdom and this number is rising. Together for Short Lives (TfSL) is a National Charity for children with life-limiting and life-threatening conditions. TfSL defines a LLC as:

“A condition for which there is no reasonable hope of cure from and from which it is likely that the child or young person will die”

TfSL defines a LTC is defined as ‘those for which curative treatment may be feasible but can fail, such as cancer. Children in long-term remission or following successful curative treatment are not included. Children can live with a life-limiting condition for many years (Villanueva et al 2016).

There are more than 300 conditions which may be considered LLC or LTC. When these are grouped together and compared to other significant long term health conditions such as diabetes mellitus the number affected is a significantly larger population e.g. in 2012/13 there were 23,719 babies, children and young people aged 0-19 years living with diabetes mellitus in England (NHS England) compared to over 40,000 babies, children and young people aged 0-19 years with a LLC or LTC (TfSL 2015). For the Yorkshire and Humber region Fraser et al (2011) estimated that the number of children in 2009/10 living with a LLC or LTC was 3741 (29.7 per 10,000). It is likely that this number has increased. Funding has recently been received by the Martin House Research Centre to update this research.

Fortunately babies, children and young people with LLC are living longer due to technological and medical advances. Consequently children’s palliative care services are required to be flexible and adaptive over a longer period of time to support these patients. Families face prolonged uncertainty, combined with significant emotional and social costs of caring for a child with a LLC or LTC (Menezies 2010). The costs are significant, both to families and to the services working alongside the families.

Child death is a rare occurrence but devastating for the family. The majority of child death happens in the first 28 days of life, and on average there are 2,109 deaths each year from causes likely to require palliative care with 98% of all neonatal deaths occurring in a hospital setting (TfSL Perinatal Pathway 2017). A good death for all is now recognised as a priority at societal and political levels according to Ellershaw and Murphy 2010. How we, as a society, care for our sick and dying is a reflection of our society as a whole. The following quote from the World Health Organisation (WHO) 1998 defines palliative care as:

“Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child's physical, psychological, and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in children's homes.”

National Context

There has been an increase in national interest in children's end of life (EOL) care following a number of high profile cases in the media. The following are recent published reports relevant to children's palliative care:

1. TfSL Commissioning report 2017 2. NICE guidelines NG61 2016 3. NHS Ambitions 2015 4. The NHS service specification (2013/14) 5. TfSL perinatal and children’s pathway (2017) 6. The Government EOL choice review (2016)

These documents set out the standards that children and families should expect and the expectations upon commissioners and service providers. The recommendation lay the foundation of this strategy. There is an opportunity to develop children’s palliative care nationally, regionally and locally and to promote equity and high quality services for all children reflecting the services available for adult palliative and EOL services. The Sustainability and Transformation Partnerships (STPs) have the responsibility to ensure equity of service provision for end of life care. Due to the low numbers of child deaths compared with adults, there is a case for regionally working to pool resources to develop services for children.

1. TfSL commissioning children’s palliative care in England 2017 sets out what commissioners (CCGs) and local authorities should be doing to plan, fund and monitor care for all children with LLC and LTC and identified many gaps. A local study in Yorkshire and Humber by Fraser et al (2015) and the more recent mapping carried out across the region (See Appendices) confirms that a significant number of CCN teams do not have funded 24/7 services and instead rely on the goodwill of staff to provide ad hoc cover when a child reaches near the end of life. There is a need to adopt an integrated planning approach regionally and use collaborative or joint commissioning arrangements to rectify this.

2. NICE guidelines NG61 2016: End of Life Care for Infants, Babies, Children and Young People with Life-limiting Conditions: Planning and Management is a suite of guidance aimed at providers of services and commissioners regarding infants, babies, children and young people with LLC and LLT. The main recommendations from the guidance include a focus on diagnosis, care planning, and delivery, end of life care, death and bereavement. NG61 recommends that End of Life (EOL) care be managed as a long term process beginning at the time of diagnosis which is sometimes prior to birth. It was commissioned with the aim of standardising EOL care for infants, babies, children and young people living with LLC. This regional strategy document will be underpinned by the recommendations and quality standards within NG61 guidance. Below are the 6 quality standards NICE promotes for children's palliative and EOL care:

Statement 1 Infants, babies, children and young people with a life-limiting condition and their parents or carers are involved in developing an advance care plan.

Statement 2 Infants, babies, children and young people with a life-limiting condition have a named medical specialist who leads and coordinates their care.

Statement 3 Infants, babies, children and young people with a life-limiting condition and their parents or carers are given information about emotional and psychological support, including how to access it.

Statement 4 Infants, babies, children and young people with a life-limiting condition are cared for by a multidisciplinary team that includes members of the specialist children’s palliative care team.

Statement 5 Parents or carers of infants, babies, children and young people approaching the end of life are offered support for grief and loss when their child is nearing the end of their life and after their death.

Statement 6 Infants, babies, children and young people approaching the end of life and being cared for at home have 24-hour access to both children's nursing care and advice from a consultant in children’s palliative care.

Alongside the guidance NICE (2016) published an impact report which set out the financial cost of children’s palliative care services. According to the report a rapid transfer costs between £1100 and £2700 per transfer with paediatric critical care beds costing between £849 and £4824 per day (NHS 2014/15 appendix B, NICE, 2016). Advanced care planning and enabling babies, children and young people to die in the preferred place may reduce the demand for critical care beds, the numbers of unplanned admissions to hospital and facilitate earlier from acute settings.

The diagram below is an illustration from the British Medical Journal (BMJ) demonstrating an overview of the guidance.

Figure 1: British Medical Journal Illustration of End of Life Care for Children

3. NHS Ambitions and foundations for palliative and end of life care 2015:

This NHS document sets out 6 ambitions and 8 foundations for organisations to achieve, these are shown on the following page.:

Figure 2: Ambitions and Foundations for Palliative and End of Life Care

Figure 3: Ambitions and Foundations for Palliative and End of Life Care

4. NHS England Service Specification for specialist level paediatric palliative medicine (2013/14) defines highly specialist paediatric palliative care (SPPC) as requiring ‘a consultant led multi- professional specialist palliative care team providing a clinical leadership role in the planning, delivery and evaluation of children’s palliative care services across a managed clinical network (MCN) led by a consultant working at level 4’. The service specification sets out that children’s palliative care is best delivered through an MCN with most direct care by CCNs with support from SPPC teams for complex cases when needed. It sets out a requirement that there should be at least one SPPC team for each population of 1- 2 million people, with a WTE lead consultant supported by a level 4 nurse. The aim

should be to develop networks of coordinated care by primary, secondary and third sector providers. The focus should be on planned care rather than crisis management.

5. TfSL Perinatal Pathway (2017): The vast majority of deaths in childhood occur in the perinatal period. This document sets out 6 standards for perinatal palliative care in an overarching framework to enable development of local/regional pathways:

1. Sharing significant news 2. Planning for choice in location of care 3. Multi-agency assessment of family needs 4. Coordinated multi-agency care plans 5. EOL care plan 6. Continuing bereavement support and care

Its focus is to enable families to spend time with their baby building memories in a home like environment.

6. Government mandate EOL 2020: Our Commitment to you for end of life care The Government Response to the Review of Choice in End of Life Care (2016)

The following is an extract from this Government paper:

"The commitment is that, as you approach the end of life, you should be given the opportunity and support to:

• have honest discussions about your needs and preferences for your physical, mental and spiritual wellbeing, so that you can live well until you die

• make informed choices about your care, supported by clear and accessible published information on quality and choice in end of life care; this includes listening to the voices of babies, children and young people about their own needs in end of life care, and not just the voices of their carers, parents and families

• develop and document a personalised care plan, based on what matters to you and your needs and preferences, including any advance decisions and your views about where you want to be cared for and where you want to die, and to review and revise this plan throughout the duration of your illness

• share your personalised care plan with your care professionals, enabling them to take account of your wishes and choices in the care and support they provide, and be able to provide feedback to improve care

• involve, to the extent that you wish, your family, carers and those important to you in discussions about, and the delivery of, your care, and to give them the opportunity to provide feedback about your care

• know who to contact if you need help and advice at any time, helping to ensure that your personalised care is delivered in a seamless way."

Regional Context

Population

The population of Yorkshire and Humber is estimated by ONS in 2017 to be 5,390,576. Therefore the region is home to more people than Scotland, New Zealand, Ireland, Finland or Norway. In the regions there are 3 of the 10 largest cities in the UK (Leeds, Sheffield and Bradford).

County Population West Yorkshire 2,281,718 South Yorkshire 1,374,655 North Yorkshire 602,277 East Riding 336,685 N Lincs 169, 820 N E Lincs 159,570

Service Provision Yorkshire and Humber

Hospices: Within the Region there are 4 hospices (Martin House Hospice Care for Children and Young People, Forget Me Not Children’s Hospice, Andy’s at St Andrew’s Hospice and Bluebell Wood Children’s Hospice), geographically well placed to cover the whole Region. The children’s hospices provide differing services, Forget Me Not specialising in Hospice at Home and in Perinatal Services under a nurse led structure, Martin House specialising in complex symptom management and EOL care with 24/7 medical support, Bluebell Wood specialising in mixed medical and nursing led care for respite and end of life, with part time consultant cover, and nurse led out of hours cover and St Andrews having a paediatric unit linked to an adult hospice providing nursing and respite care. Bereavement services are provided for hospice patients but not for all child deaths across the whole region and there is very limited specialist psychology input for families across the region.

Hospitals: There are 14 National Health Trusts (Airedale NHS Trust, Barnsley Hospital NHS Foundation Trust, Bradford Teaching Hospitals NHS Foundation Trust, Calderdale and Huddersfield NHS Foundation Trust, Doncaster and Bassetlaw Hospitals NHS Foundation Trust, Harrogate and District NHS Foundation Trust, Hull and East Yorkshire Hospitals NHS Trust, Leeds Teaching Hospitals NHS Trust, Mid Yorkshire Hospitals NHS Trust, Northern Lincolnshire and Goole Hospitals NHS Foundation Trust, Sheffield Children’s NHS Foundation Trust, Sheffield Teaching Hospitals NHS Foundation Trust, The Rotherham NHS Foundation Trust, York Teaching Hospital NHS foundation Trust including 2 Tertiary centres (Leeds and Sheffield Children’s Hospitals)). There are 6 consultants providing palliative medicine across the region two of whom are specialists at level 4 (providing 1.6 WTE). The two tertiary centres do not currently have specialist palliative care services for children.

Nursing: There are currently 14 NHS Trusts across the region providing children’s community nursing. This service is not 24/7 everywhere.

STPs: There are 3 Sustainability and Transformation Partnerships (STPs):

 West Yorkshire and Harrogate STP (covering 11 Clinical Commissioning Groups (CCGs): NHS Airedale, Wharfedale and Craven CCG, NHS Bradford City CCG, NHS Bradford Districts CCG, NHS Calderdale CCG, NHS Greater Huddersfield CCG, NHS Harrogate and Rural District CCG,

NHS Leeds North CCG, NHS Leeds South and East CCG, NHS Leeds West CCG, NHS North Kirklees CCG, NHS Wakefield CCG)  Humber Coast and Vale STP (Covering 7 CCGs: NHS East Riding of Yorkshire CCG, NHS Hull CCG, NHS North East Lincolnshire CCG, NHS North Lincolnshire CCG, NHS Scarborough and Ryedale CCG, NHS Vale of York CCG) and  South Yorkshire STP (covering 7 CCGs: Doncaster CCG, Rotherham CCG, Barnsley CCG, Hardwick CCG, Sheffield CCG, Bassetlaw CCG and North Derbyshire CCG).

There are 14 Child Death Overview Panels (CDOP) (including a joint panel covering North Lincolnshire and North East Lincolnshire) across 16 local authorities. Numerous special schools and a huge and varied workforce provide care to children and their families with palliative care needs. This exemplifies how children’s palliative care in this region is delivered across a huge range of disciplines and organisations and there needs to be collaboration across all of these to ensure that provision is high quality and equitable.

Prevalence of children with LLC/ LTC:

We do not have exact figures for children within the region with LLC or LTC as there is no central database either regionally, nationally or locally. The numbers can only be estimated through research studies and by analysing the numbers of child deaths. Fraser et al 2011 conducted a study to regionally estimate prevalence and although this data is over 7 years old it is the most recent regional estimate available (the data can be seen below).

Fraser et al 2011: Prevalence of LLC 0-19 by Local Authority 2009/10:

Fraser et al 2011: Number of Cases of children (0-19) with LLC by Local Authority 2009/10

Holistic Elements of Children’s Palliative Care.

Babies, children and young people with palliative care needs are cared for in every environment, assessing nurseries, schools and colleges, and primary care in the same way as their well peers. In addition, they often access specialist services due to their underlying condition. As a Network we aim to ensure that the care children, young people and their families receive is of the highest quality, safe and relevant. It must meet the needs of child, always seeing the child first, before their condition.

Working across health, social care and education; statutory and voluntary sectors; the Workforce and Education Forum aims to improve the knowledge, skills and competence of those who provide care to babies, children and young people with life limiting conditions, together with their families.

Developing cross-organisational working and partnerships, the aim is to upskill the workforce through the introduction of education and development opportunities, such as eLearning, workshops and conferences, and development toolkits.

Models of Hospice Care

Yorkshire and the Humber have 4 hospices, each with a different model of care which are complementary and result in excellent options for families in the region. The following is a brief illustration of the different services in each of the four hospices:

1. Perinatal Palliative Care – Forget Me Not Children’s Hospice

The risk of death in the first year of life is the highest than at any other age in childhood. In response to this fact TfSL published "Perinatal Pathway for Babies with Palliative Care Needs" (2017). The hospices in the Yorkshire region had already been providing services for new born babies with LLC but FMN hospice developed this model further accepting referrals during the antenatal as well as the neonatal period, when previously families had had very little choice or opportunity for support. Most babies surviving birth with LLC had previously been cared for on the neonatal units, many dying there and families leaving the hospitals just with those memories but without their baby.

The dedicated FMN team comprises of a midwife (the first in the country) with skills in supporting both the pregnant woman and unborn baby, following early identification scans of a life limiting condition. The midwife is able to follow that pregnancy through to which ever outcome there is for the baby. The wider perinatal team comprises a neonatal coordinator, two neonatal trained nurses and care team members supported by a Nurse Consultant. This perinatal service provides support 7 days a week ensuring all babies and families are supported holistically. Families are supported from an early scan, options are discussed once the diagnosis is confirmed and plans are made with local midwifes around the wishes of the parents. An advanced care plan is often written with parents including the birth plan and also including the plan for the unborn baby whether theydie in utero, at birth, a few short hours post birth or survive longer. The therapy service comprising of a counsellor, bereavement counsellor, complementary therapists, a music therapist and a south Asian support worker likewise works alongside the perinatal service to help reduce the stress on the family. Following feedback, the hospice has also set up a peer support group for mums who have lost a baby but are pregnant again and can be followed by the midwife through that experience; a further baby group attended by those that have survived and their parents and thirdly a bereavement group for parents who have lost a baby.

Outcomes for Perinatal Care

 Seamless care for families coming into contact with multiple professionals across hospital and community settings  Dedicated palliative perinatal time can help reduce need for NNU hospital stays and widen choice of place of care and give control back to families when they feel they may have none.  Feedback from professionals indicates that families are better supported along their journeys with dedicated perinatal palliative support.

2. Specialist Paediatric Palliative Medicine at Martin House Hospice

Martin House provides respite, step down, symptom control and end of life care across North, East and West Yorkshire and has 24/7 medical cover. With daytime and out of hours specialty doctor cover arrangements, two part time consultants in paediatric palliative medicine and a part time medical

director, Martin House offers specialist medical care for children with LLC and complex medical problems. This specialist expertise is provided to the hospitals in North, West and East Yorkshire including to both tertiary hospitals as well as to the children and young people cared for in the hospice. Yorkshire is one of only 2 centres in England able to train doctors in paediatric palliative medicine and therefore there is usually a trainee doctor working with the medical team. Martin House has nine rooms for children and a dedicated six bedded young adult facility and will continue to care for young people up to the age of 30 years. Transition projects are in development to help support young people moving into adult services. The model of care is a holistic family centred service with groups for siblings, parents and grandparents and bespoke bereavement groups. Emotional and spiritual wellbeing is supported by a Consultant Clinical Psychologist, Chaplin and bereavement team.

3. Bluebell Wood Hospice – family Support

Bluebell Wood provides end of life care, and respite opportunities to children and young adults from South Yorkshire, North Nottinghamshire, North Derbyshire and North Lincolnshire. Care can be provided in the home and in the hospice. This is jointly led by a paediatric palliative medicine consultant and an experienced nursing team. Referrals are received at any point in the journey of a child or young person, including antenatal referrals. There is 24 hour telephone support from the nursing team available to all families, which is strengthened by a 24 hour on call nursing service providing increased levels of support for children and young people with increased symptom control needs. Children and young people, and their families, are further supported by a team of other professionals, who provide sibling support (both individual and group work), music therapy, physiotherapy, counselling and bereavement groups. Activity days and events create an informal opportunity for families to forge relationships both with the hospice, and with other families, encouraging peer support. The hospice is dedicated to the formation of a clinically managed network to optimise palliative care delivery children and young people throughout the region. At Bluebell Wood, the family is at the heart of what we do, and our dedicated Family Support team offer a full and proactive programme of practical and emotional help for everyone, including mums and dads, brothers and sisters, and grandparents and other relatives too. They introduce themselves to families as soon as possible after a referral, and keep in touch throughout their Bluebell journey, making sure everyone gets the right support, at the right time, in the right way.

Our support includes fun days at the hospice (giving families the chance to relax, enjoy our facilities, and meet other families like them), sibling support (including workshops, and one-to-one support), music and play therapy, and counselling, both before and after bereavement.

We also work closely with our parents and sibling forum to make sure families feel involved in the future direction of the hospice and a key part of our decision making process.

4. St Andrews Hospice – Transition

We are currently actively working towards transitioning our first young adult from the Children’s Unit to the Adult unit. A steering group has been set up to ensure a supporting infrastructure is in place to allow smooth transition, following the NICE guideline [NG43] Published date: February 2016. This has identified how different both the adults and children’s unit are and how we need to assist the adult unit in adapting to the differing requirements for our young people and the training that will be

needed for the staff on the adult unit to care for our young people have very complex needs. Gap analysis will be completed to look at areas requiring significant time to review to reduce the risks to patients and services/ staff involved in the smooth transition of the these young adults.

It has also highlighted the need to increase the staffing levels for the adult unit, as some of our young people with complex needs, when assessed, and will continue to require their care on a 1:1 basis while in the adult unit. This in turn is a challenge for families as on the whole the children’s unit provide 1:1 ratios with our children and when they move into adult provision this may not be available, leaving the families worrying about the care of their son or daughter so we need to work hard to ensure we maintain a trusting relationship once they have transitioned. Adult hospices in general also plan for end of life care, children’s services can be very different as children and young adults can live for many years, so strength based care is really important to be maintained within the adult services, allowing the young adults to plan for their future. This will be a new area for staff to become proficient in.

Transitioning from children’s services into Adult is a challenging and daunting prospect for the young people and their family and all plans must be person centred, ensuring the support is developmentally appropriate. We have identified that we need to keep the whole family informed as we move forward and ensure if the young person has capacity that they agree with proposals put forward and that it is their voice that is paramount. For those young people without capacity we need to ensure that the plans made with the parents are in that young person’s best interest. We are meeting with young adults to understand their needs, wishes and expectations and ensuring all realistic expectations are met where ever possible. We are taking a proactive approach to this transition and are contacting medical teams/ social services/ social care within the area to ensure continuity of care and support through transition. We are going to be formulating a transition policy with advice and support from the Transition network services team, who we have been networking with. They have an invaluable amount of experience and knowledge that they will let us feed in to.

Bereavement – Child Bereavement UK (CBUK) and Hospices

There are a number of services providing bereavement support across the region. Notably Child Bereavement UK has specialist bereavement coordinators in Hull and Bradford.

All four hospices provide bereavement support within their catchment areas.

Martin House Hospice are currently providing bereavement support for all child deaths within their catchment area (North, East and West Yorkshire), this includes families which are not previously registered and also families who have had a child die suddenly or unexpectedly. This is a new service and is currently undergoing evaluation.

In June 2017 Forget Me Not (FMN) began taking sudden unexplained deaths in children (SUDIC) referrals, working with families and those affected by the sudden death of a child across West Yorkshire.

FMN have worked with many cases in a range of different circumstances, tailoring their support to suit each individual family and the circumstances around the death of their child. This work has seen the team support a wide range of people in different settings. The team have worked with large numbers of teenagers affected by the death of a close friend, grandparents, siblings, parents and

extended family as well as school pupils. We have been able to offer our support in-house through the snowflake and therapy suites, in schools and in family homes and other community settings.

The emotional toll on staff has been paramount in the development of this work. Pathways have been developed for staff welfare and debriefs are planned in as soon as the referral is accepted. Additional pastoral support for staff is available when working with these families, and training on working with trauma is scheduled for later in the summer.

The Martin House Research Centre (MHRC) – University of York

Martin House and the University of York have recently collaborated in the establishment of a Academic Centre for Paediatric Palliative Medicine. This is the second paediatric research centre in the UK and the aim is to conduct high quality research on the management, care and support of babies, children and young people with life-limiting conditions and their families. This research will deliver evidence and expertise relevant to policy makers, health and care professionals and families.

Literature Review: What do children and families tell us?

A comprehensive literature review of the ‘child and family views on living with a life-limiting condition and the services they receive’ was requested from EACH Library on the 7th July 2017 to cover the ten year period 2007-2017. The resources searched were Healthcare Databases, MEDLINE, EMBASE, CINAHL and BNI (via NHS Evidence), Internet: NICE Evidence and Google. The review produced 51 resources which demonstrates the wealth of information and research available regarding the views of children and families. One of the reports selected was one undertaken in 2013 by Martin House Hospice regarding service provision in Yorkshire and Humber. The available information and evidence on family views and experiences have been used to inform recommendations within this strategic document regarding the support and care required.

For the purposes of this document the focus will be on the five most relevant reports:

1. The Big Study 2013 (TfSL) was a large scale qualitative study undertaken in the West Midlands and involved interviewing 51 families including 18 young people with a variety of conditions. The conclusions were that children and their families want services that they have trust and confidence in, high quality holistic care for the child and wider family, access to respite and short breaks and services that enable them to take time out to experience ‘normal family life’.

2. Coad et al (2015) concluded that families want well-coordinated health care with the option of having this care provided at home.

3. In 2013 Martin House conducted research into the views of professionals, families and young people. Twenty-four parents/ carers and 4 young people underwent semi-structured interviews. The results indicated that the right support and resources enhanced quality of life. Problems with service provision included short opening hours, transport issues and lack of interpreting services. Specialist EOL care was limited within the region. Families reported finding it difficult to access specialist medical cover on evenings and weekends. The importance of accessing flexible, high quality consistent, personal nursing care was highlighted and the importance of having a particular professional acting as a care coordinator. Respite was important to families and the loss of vital services at transition to adult services was also identified as a problem.

4. A review of qualitative research was undertaken across Scotland in 2015. This report was titled CHISP. The purpose of this study was to identify, describe and synthesize family needs and experiences. Two themes emerged, the emotional and psychological impact of living with a LLC and the extraordinary roles that parents assume to meet their child’s care needs.

5. As part of the development of NICE guidance (2016) NG61 a consultation with children and young people was undertaken. A number of these children were from the Yorkshire and Humber Region. The children ranged from 12- 18 years of age and had a range of conditions. 14 young people took part in the initial focus group (8 were from Yorkshire and Humber) and of the 19 taking part in the pilot, 13 were from our region. The specific topics were set by the NICE committee: Information and communication, care planning, place of care and emotional care. From these focus groups and interviews it was clear that young people regarded their consultant as a key source of medical information but that they also regarded speaking to other young people with the same or a similar

condition as important too. The young people mentioned that they would use online forums and also confirmed the view from previous studies that getting medical information on a weekend was a difficulty for them. They felt that care plans were a good idea and all wanted to be involved in writing them at varying levels but were keen that they were termed "life plans" not "illness" or "end of life" plans. In terms of place of care most of the young people spoken to stated that they dislike hospital stays preferring home where possible although they understood the need to be in hospital at times. Hospice was felt to be better but was ‘still not home’. Technology while away from home was felt to be really important as it was their way of staying in touch with friends. Access to the internet and satellite TV could make their stays more bearable. The importance of having good carers came through strongly in the research and the impact on quality of life was mentioned. Young people wanted the opportunity to talk to a psychologist as it was recognised that not everyone has access to this service. For those that could access a psychologist the value was recognised in terms of supporting positive coping mechanisms. Young people wanted the option of having their own carers that knew them well, with them in all care settings (hospice and hospital) and one care plan to go to all services rather than lots of different plans.

In summary this research identified consistent themes throughout. What families want is:

 1 point access / care coordinator  Respite care  High quality 24/7 nursing care when and where needed  Support before a crisis occurs and crisis management  Time out for ‘normal family life’  Transition services

What children/YP want?

 Chance to meet up with/talk to those with a similar diagnosis  24/7 medical advice  Life plans not illness or EOL plans – coordination so all people have same plan  Consistent care  Psychologist advice  Home care where possible

“Living as normal life as is possible with support to enable this”.

Mapping / Gap Analysis Background

There have been a number of mapping and gap analyses carried out across the Yorkshire & Humber region to assess need. In 2015 Fraser et al completed a gap analysis of clinical provision to make the case for regional investment (SPPCY report). This resulted in funding being sought for a regional network coordinator to build on the work completed so far, to make the case for regional investment in children’s palliative care and to coordinate the development of a regional strategy. This document/strategy report is the culmination of that work and will form the regional strategy and work plan.

As the SPPCY report included data from 2015 the mapping and gap analysis has been repeated and extended in 2017 to include an analysis of additional services across the region such as EOL working groups, bereavement nurses and midwives, psychological services, IT systems and links between the hospices and DGH’s across the Region. As part of the mapping and gap analysis an audit of CDOP data was also undertaken. This is in addition to the analysis of numbers of clinicians across the region working in children’s palliative care and nursing teams including provision of out of hours care and end of life care as per the original report. A comparison will be made of the data which has been refreshed to show any increases or decreases in provision over the last two years. This gives a more comprehensive gap analysis of regional service provision, however, it should be noted that there are limitations to the data. There is a lack of information regarding local authority services and spiritual services across the region and there is a lack of new research regarding family and CYP views. These are recommendations for future development/research. The data provided was dependent upon who filled in the pro forma document (see appendix 2) for each service.

Mapping / Gap analysis Method:

The original pro forma from the 2015 study was used and extended to include additional questions about bereavement nurses and midwives, EOL groups, data collection systems. The pro forma was sent out to all hospital trusts across the region and all CCN teams across the region. There was a delay in response from some teams and these were chased up via telephone calls.

All hospices were asked to fill in a pro forma (see appendix 3). These were all returned in a timely manner.

All local authorities were asked to fill in a pro forma regarding their children’s specialist services for children with life-limiting conditions however only 5 were returned so these have not been included due to a lack of comparable data.

The data from the pro formas was analysed, where applicable was compared to data from the 2015 study and is presented below.

All 14 CDOPs across the region were asked to send in a data audit of the last three years of data (2013/14- 2015/16). All returned the data in a timely manner. The data from the CDOP audit will be fully analysed by a team of researchers and will be formulated into a full published report. The basic data is presented below.

Mapping / Gap Analysis Results:

Child Deaths

CDOP Data/Service Evaluation for the Yorkshire and Humber Region

Child Death Overview Panels (CDOPs) have a statutory duty to review all child deaths within their geographical boundary to children aged under 19. Within Yorkshire and Humber there are 14 CDOPs serving 16 local authority areas. CDOPs are multi-agency panels that meet regularly to assess the reported deaths within their area and look for modifiable factors with the aim of preventing further deaths to other children. The panel will usually make a series of recommendations from their assessments for services to take forward both locally and nationally. There is a formal reporting procedure nationally regarding child deaths and currently there is a national initiative looking at analysing all child deaths and holding data on a national database but this is not yet in place. There is currently no regional reporting of child deaths and no regional database, though the CDOPs across Yorkshire and Humber do have regional meetings to discuss themes and trends. As part of the 2017 mapping project an audit of Child Death Overview Panel data for the three years 2013-2016 was undertaken on a regional basis to try and bring the data together to assess numbers of deaths, age groups, ethnicity and place of death to ascertain a regional picture regarding the scale of the issue and to enable us to look at place of death with regards to the provision of care services. As this was a service evaluation ethical approval was not required and therefore not sought. All CDOP’s across the region (n 14) were asked to provide three full years of CDOP data (1st April 2013/ 31st March 2014, 2014/15, 2015/16) to include all child deaths (expected and unexpected), age (0-17 inclusive), ethnicity, partial postcode (1st part only), place of death (home, hospice, hospital, other) and category of death following review (1-10).

The CDOP’s reported a total of 1221 deaths, with an average mortality rate of 407 deaths per year (total child population = 1.1 million, 3.5 deaths/10000 children). The major causes of death were perinatal/neonatal events, and chromosomal, genetic and congenital anomalies; Combined these account for 60% (n=712/1183) of the dataset. ‘Expected’ deaths accounted for 64% (n=730/1149) of all child deaths. Place of death for expected deaths = Hospital deaths: 77% (n=564) Home: 9% (n=67), Hospice: 13% (n=91). Ethnicity data was analysed for place of death (excluding neonatal and unexpected deaths) and found that a greater proportion of white British children (n=201) died at home (16%, n=33) or within a hospice (23%, n=47) when compared to Asian children (Home: 12%, n=14; Hospice: 9%, n=10); statistically significant at Chi-squared 15.07, p=0.002.

For the purpose of this service evaluation LLC/LTC were classed as all category 4, 6, 7 and 8 deaths (see table on following page for category descriptors). This includes a known element of bias but was felt to be the best indicator of likely causes which will require palliative care and life-limiting/ life- threatening conditions. When we later analyse data further may find number increases as will include all perinatal and neonatal deaths. For the purposes of this audit a child with a life-limiting Condition (LLC) is defined as ‘all perinatal/ neonatal deaths’ and all ‘category 4, 6, 7 & 8 deaths’. We are aware that by including all perinatal and neonatal deaths in addition to all category 4, 6, 7 and 8 deaths that we are introducing a known element of bias but looking at the balance of probability most of these cases will involve palliative care and it was felt that this was the best way to capture the required information with relative ease.

Use of the B2 and B3 forms was considered but due to overlap it was felt that they would not capture the information required.

Cause of Death:

The table below shows the pattern of child deaths by category over the three year rolling period (2013- 16). This shows that the highest causes of death across the region are category 7 chromosomal, genetic and congenital anomalies (31 %) and category 8 perinatal/neonatal events (29 %). This allows us to determine preventative methods and develop services to support children and their families with these conditions in life and through death and bereavement.

Further analysis of this data is required and will be provided when the full audit report is published. However this gives a good indication of the number of deaths across the region and the geographical spread.

CDOP Category Category descriptor Total Number over Av per year 3 Years Rolling Cat 1 Deliberate Injury or 14 4.7 Abuse Cat 2 Suicide 27 9 Cat 3 Trauma 61 20.3 Cat 4 Malignancy 97 32.3 Cat 5 Acute Medical/ 66 22 Surgical Cat 6 Chronic Medical 37 12.3 Condition Cat 7 Chromosomal, Genetic 371 123.7 and Congenital anomalies Cat 8 Perinatal/Neonatal 341 113.7 event Cat 9 Infection 76 25.3 Cat 10 Sudden and 93 31 Unexpected Death Not yet reviewed/ 38 N/A categorised total 1221 407

Numbers of Deaths According to Local Authority Area: Childhood deaths across the Y and H region vary in terms of number occurring in different geographical locations. The majority (69%) of deaths across our region are from causes likely to be life-limiting / life-threatening as the table below illustrates. With 28% being from other causes and 3% of deaths not yet reviewed/ categorised. The large urban areas of Bradford (n 207, Leeds (n 167) and Sheffield (n 144) have the highest number of child deaths in the region as would be expected with the more rural areas of East Riding (35) and Calderdale (n 45) having the lowest numbers (aside from Lincolnshire). This provides insight into the challenges facing us in terms of ensuring that there is equitable levels of care provided to all children regardless of geographical location.

The data will be analysed further but a summary of the data is provided in the table below.

CDOP Number of Number of Number Not yet Deaths: All Deaths LLC/ Deaths Coded/ causes 0-19 LTC (Cat 4, 6, Other Reviewed years 7 & 8) (Cat 1, 2, 3, 2013-2016 5, 9 & 10) Barnsley 56 39 15 2 Bradford 207 164 39 4 Calderdale 45 30 15 0 Doncaster 81 55 24 2 East Riding 35 18 16 1 Hull 68 46 20 2 Kirklees 114 82 23 9 Leeds 167 115 38 14 Rotherham 53 36 17 0 Sheffield 144 103 40 1 York and 105 66 37 2 North Yorks Wakefield 84 49 34 1 North East 34 24 10 0 Lincolnshire

North 28 19 9 0 Lincolnshire Regional 1221 846 337 38 TOTAL

Regional Clinical Cover

Differences 2015-2017: Named Lead Clinician:

NHS Trust / Lead Clinician 2015 Number of Lead Clinician 2017 Number of Hospice funded PA’s funded PA’s Airedale N 0 N 0 Bradford N 0 Y 0.375 PA

Barnsley Y Ad hoc Y Sp interest – ad hoc Calderdale and N 0 N 0 Huddersfield Doncaster and Y Ad Hoc N 0 Bassetlaw (Bassetlaw) Northern Y Ad hoc N 0 Lincolnshire and Goole Harrogate ? N 0 Hull and E Yorks N 0 N 0 Mid Yorks N 0 Y 1 PA Sp Interest liaison consultant Leeds N 0 N 0 Rotherham N 0 N 0 Scarborough Y 0.5 PA Y 0.5 PA Sheffield Y 1 PA Y 1 PA York Y 0.5 PA Y 0.5 PA Forget Me Not N 0 Y 2 PA’s Hospice Martin House Y 6 PA’s Y 12 PA’s Hospice Bluebell Wood Y 5 PA’s Y 10 PA’s Hospice St Andrew’s N 0 N 0 Hospice

There have been some changes in terms of the named lead clinical cover for the District General Hospitals and Trusts since the 2015 SPPCY report. Out of 14 Trusts (including two tertiary centres) 6 now report having clinical leads (43 %). It was reported that Bassetlaw and Diana Princess of Wales no longer have clinical leads but Bradford, Mid Yorks and Hull now do. In order to meet the target of having a lead clinician at all trusts this would mean a further 8 lead clinicians need to be funded. Leeds tertiary centre do not currently have an NHS funded lead palliative care consultant.

There are a total of 27.375 funded PA’s across the Region for Palliative Care. 24 of these are funded via the Hospices (voluntary sector funding). Only 5 of 14 (36%) trusts are funding Programmed Activities (PA’s) in Children’s palliative care.

Yorkshire and Humber are privileged to be one of only three sites in the UK providing specialist paediatric palliative medicine training (alongside Wales and London) for paediatricians who wish to work as paediatric palliative medicine specialists. Training takes place in Leeds Teaching Hospitals Trust/Martin House Hospice as well as at Sheffield Children’s Hospital/Bluebell Wood Hospice. Paediatric palliative medicine teaching and exposure to the hospice environment is provided to all doctors training in paediatrics across the region. This is delivered by doctors from the network through the Yorkshire and Humber Postgraduate Deanery Specialty Trainee Education Programme (STEPP) for paediatricians in their first three years of training (ST 1-3) and as part of a module of the MSc Child Health for paediatricians in their later training (ST4-6).

There are 6 clinicians with funded PA’s in children’s palliative care working across the region (Bradford, Martin House, Bluebell Wood, Forget Me Not, Sheffield Children’s Hospital, York and Scarborough) plus medical provision at St Andrews.

Regional Nursing Cover:

NHS Trust Lead Nurse 2015 Lead Nurse 2017

Airedale Yes Yes Barnsley Yes No Bradford Yes Yes Calderdale and Kirklees No Yes Northern Lincolnshire and Yes Yes Goole Doncaster and Bassetlaw Yes No Harrogate No No Hull Yes Yes Leeds No Yes Mid Yorks Yes Yes Rotherham Yes Yes Scarborough No Yes Sheffield Yes Yes York No Yes

In terms of nursing leads, Bradford, Calderdale, York and Scarborough now all have nursing leads but Barnsley and Doncaster and Bassetlaw are reported to no longer have nursing leads and Harrogate is still without a nursing lead. For Leeds the named lead is currently an oncology lead nurse and additional funding is currently being sourced to try and ensure a dedicated nursing lead for all palliative care is provided for Leeds. To meet the target of all areas having a lead nurse only three areas need to provide nursing leads for children’s palliative care. This suggests good coverage (79%) but not complete coverage for the region for named nursing leads in children’s palliative care. It is not known whether the lead nurses have funded time to allow for ‘lead nurse activity’. There is wide variety in the skills and experience levels of the nurses across the region. There are several nurses working at level 7 and 8 of the Royal College of Nursing competencies for children’s palliative care.

Children’s Community Nursing (CCN) Cover:

N.B. 16 CCN teams responded to the mapping study (14 trusts, 2 x POON teams).

Weekday Hours: The majority of CCN teams (14 out of 16) work between standard hours of 8am-6 pm or 9am – 5pm. Only 2 CCN teams state that they work extended hours.

Weekend cover: 10 CCN teams (62.5%) offer routine weekend cover with one of these offering on call. The hours of this cover vary. 2 of these services are for oncology patients only.

Routine on call provision: 8 services out of 20 (CCN teams (16) plus Hospices (4)) routinely provide on call services (Calderdale (rota basis), Rotherham CCN teams, Leeds POON team (oncology only), Sheffield POON team (oncology only), Sheffield Helena Specialist Nursing Team and 3 of the hospices (24/7 telephone advice). This compares to 6 services (out of 24) in 2015. Although this is an increase this still only equates to (40%) and 2 of these services are for oncology diagnoses only, and one for children with a neurological or neuro disability diagnosis only. There are still large geographical gaps in on call service.

End of Life On call Provision: 17 services out of 20 (85%) stated that they can provide EOL on call provision including 3 of the 4 hospices across the region. Of these 17 services, 7 (41%) were ad hoc (not funded services) and rely on the good will of staff. 2 were oncology teams (POON) for oncology diagnoses only.

CHOON teams at Tertiary centres:

Both Tertiary centres (Leeds and Sheffield) have dedicated Children's Haematology and Oncology Outreach Nursing (CHOON) teams which provide an excellent 24/7 nursing service and out of hours (OOH) visits across the Region for all children with an oncology diagnosis where and when required. This prevents numerous hospital admissions for the management of symptoms which can be resolved by a specialist nurse visit. This demonstrates the disparity in services being provided for children with oncology diagnosis in comparison to all other diagnoses. Oncology nursing teams are an exemplar for palliative care services for all diagnoses. All children with a LTC or LLC should receive the same high quality service provision of 24/7 nursing care as recommended within the NHS service specification and more recently in NG61 (NICE 2016).

Additional Data:

The mapping and gap analysis undertaken in 2017 asked for some additional information from trusts across the region, for example whether they have an active end of life working group, whether there was a bereavement nurse or midwife within the trust and what information systems the trust and CCN teams use.

EOL Groups:

It was reported that only four trusts do not have an end of life working group (Doncaster and Bassetlaw, Harrogate, Hull and Rotherham), Mid-Yorks report they are in the process of setting one up and all others report having one. This suggests that there is good coverage (71%) of end of life

working groups across the region. It is the aim of the network that all areas will have an EOL group and that the YHCPCN will provide a way of linking these across the Region to help with sharing resources and information.

Bereavement Nurse & Bereavement Midwife:

Trusts that report they have a bereavement Trusts that report they have a bereavement nurse midwife Bradford Airedale Harrogate Barnsley Leeds Bradford N Lincs and Goole Harrogate and District Hull and East Yorks Leeds Mid Yorks Rotherham Sheffield Teaching Hospital York Scarborough

Only 3 trusts across the Region report that they have bereavement nurses (21%). There is better coverage in terms of bereavement midwives as 12 trusts report having a bereavement midwife (71%) to support bereaved parents on the neonatal ward.

BLISS the charity for infant death recommends that all neonatal wards that have any neonatal deaths should have a bereavement midwife available to support parents and family experiencing neonatal death. In order to meet this a further 2 bereavement midwives would be required in Calderdale, Doncaster.

Information systems/databases used: The majority of services use SystmOne, with others using Medway, EPR, PPM and Lorenzo. The regional hospices are either already using SystmOne or are currently undergoing IT upgrades to use SystmOne within their Hospice. This will enable data linkage between those services within the NHS that are using SystmOne and ensure that there is less duplication for families.

Services Provided by the Hospices

Service Provision Hospices:

Name how family age num clinical OOH 24/7 24/7 advice psychologist many rooms range bers cover pharmacy beds St 4 2 0-25 115 9-5 Dr, 24/7 No Yes no (do have Andrew’s 24/7 nurse counsellor) Hospice nurse Martin 15 9 0-30 420 24 24 No Yes yes House hours hours Children’s Cons Hospice ultan t and nurse Forget 5 2 0-25 435 24 24 Yes Yes no (do have me Not hours hours counsellor) Children's (ANP) nurse Hospice Bluebell 10 4 0-25 438 9am-5 24 Yes Yes no (do have Wood hours counsellor) Children's nurse Hospice Region 34 17 1408 2 4 1 TOTAL psychologist plus 3 x counsellors

There are 34 hospice beds across the region and 17 family rooms. All hospices prioritise EOL care and all 4 hospices will accept EOL cases 24/7 at short notice. There are a higher number of beds within West and North Yorkshire. There is still a clear variation in clinical cover (both for clinicians and nursing), OOH cover (3 of the 4 hospices providing OOH cover), pharmacy cover (2 of the 4 hospices having 24/ 7 pharmacy cover) and psychology services (1 psychologist and 3 counsellors) across the hospices regionally. Currently one hospice provides social work services. All hospices have different models of care and therefore choice is available for families. Three of the four hospices work outside the Yorkshire and Humber region and therefore link with other networks. See appendix 7 for the service provision offered at all 4 hospices.

Conclusions

There are currently significant gaps in the provision of 24/7 services across the region with a clear disparity in terms of oncology services and services for other LLC or LTC. There still remains a postcode lottery in terms of the service provision for children across the region, with some areas having funded 24/7 nursing services and dedicated EOL services which can be provided in the child's home and others having limited day time services. For children and families this means that in those areas where this isn’t available their only recourse is to hospital emergency and acute services. There still remains an underdeveloped palliative and EOL service in much of the region, a lack of formal, coordinated commissioning of the required services with the vast majority of specialist children’s palliative care in the region being provided by charity funded organisations.

There are gaps in terms of bereavement nurses and bereavement midwives in some areas, gaps in psychology and counselling services, gaps in EOL groups and lead nurses and funded PA’s for lead clinicians in children’s palliative care. This all points to a very disparate and inequitable provision of service across the region which needs to be rectified.

Case for investment:

The NHS Standard contract for paediatric palliative care, states that specialist children’s palliative care is more sustainable and cost effective when it is planned and commissioned across a total population of 1 to 1.5 million (NICE 2016). Commissioners, CCG’s and local authorities struggle to create economies of scale to commission services effectively due to the relatively small numbers of babies, children and young people affected by LLC in local areas, hence the need for this regional strategy.

In Yorkshire and Humber there is now an effective established network which is currently undergoing the transformation required to become a managed clinical network (MCN). The network will be responsible for monitoring and delivering the objectives and outcomes set out within this strategic document. This region serves over 5 million population and therefore requires 2 SPPC teams within the two children's hospitals and with a lead consultant and lead nurse leading the network. Yorkshire and the Humber are, however, privileged to be one of only three sites in the UK providing specialist paediatric palliative medicine training (alongside Wales and London) for paediatricians who wish to train in paediatric palliative medicine. Training takes place in Leeds Teaching Hospitals Trust/Martin House Hospice as well as at Sheffield Children’s Hospital/Bluebell Wood Hospice. There are a number of level 4 consultants and nurse specialists working across the Region and they are actively involved with the network. It is important to ensure that the regional Managed Clinical Network (MCN) is sustainable to ensure compliance with the NHS service specification and this is one of the objectives within the strategy and associated work/delivery plan. The proposed vision set out in the strategic document will deliver the NHS England Service Specification for specialist level paediatric palliative medicine for the Yorkshire and Humber Region if adopted in full.

References

Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020, London, 2015.

Children and Families Act. UK Government. London. 2013.

Coad, J, Kaur J, Ashley N, Owens, C, Hunt, A, Chambers L, Brown E (2015) Exploring the Perceived Met and Unmet Need of Life-Limited Children, Young People and Families; Journal of Paediatric Nursing Vol 30 Iss 1 pg 45-53.

Ellershaw, J, Dewar, S, Murphy, D - Achieving a good death for all. 2010.

Fraser LK, Jarvis SW, Aldridge J. Children in Scotland requiring palliative care: identifying numbers and needs (the CHiSP study), 2013.

Fraser LK, Miller M, Aldridge J, et al. Life-limiting and life-threatening conditions in babies, children and young people in the United Kingdom; national and regional prevalence in relation to socioeconomic status and ethnicity: University of Leeds, 2011.

Fraser LK, Monaghan A & Mayer A. Provision of Specialist Paediatric Palliative Care in Yorkshire and the Humber University of York and Martin House Hospice 2015.

Government. Our Commitment to you for end of life care The Government Response to the Review of Choice in End of Life Care, 2016.

Martin House Hospice. Supporting Children with Life-Limiting Conditions - Martin House

Menezes, A. Moments of realization: life-limiting illness in childhood—perspectives of children, young people and families. - International journal of palliative nursing, 2010.

NHS England. 2013/14 NHS standard contract for paediatric medicine: Palliative care, 2013.

NHS England. Manual for Prescribed Specialised Services. London, 2014.

NICE Guidance (NG 61) End of life care for infants, babies, children and young people with life-limiting conditions: planning and management, London, 2016.

Office for National Statistics. Census 2011 Population by single year of age. Secondary Census 2011 Population by single year of age. ONS 2017.

Service Provision in Yorkshire and the Humber. A report of research carried out by J N Research on behalf of Martin House Children's Hospice. 2013.

Together for Short Lives The Big Study: Meeting the Needs of Life-Limited Children in the West Midlands BRISTOL, 2013.

Together for Short Lives. Commissioning children’s palliative care A guide for Clinical Commissioning Groups (CCGs). Bristol, 2017.

Together for Short Lives. Definitions. Secondary Definitions (2015). http://www.togetherforshortlives.org.uk/professionals/childrens_palliative_care_essentials/definiti ons.

Together for Short Lives. Perinatal Pathway for Babies with Palliative Care Needs (2017)

Villanueva G, Murphy MS , Vickers, D. End of life care for infants, babies, children and young people with life limiting conditions: summary of NICE guidance BMJ: British Medical Journal (2016).

World Health Organisation. WHO Definition of Palliative Care. Secondary WHO Definition of Palliative Care (1998). http://www.who.int/cancer/palliative/definition/en/.

Appendix 1: Development of Strategy

To develop the YHCPCN Strategy Document and Action Plan three groups were set up as follows:

Project Team – work closely on Critical Friends Team – Comment drafts of the Strategic Action Plan on the draft Strategic Action Plan at each stage

Expert Reference Group – All Network Members

Attend workshops to input into action plan and get involved in consultation phase of final draft

Stages of Development:

 Information Gathering : Mapping of current services and Workshops/Strategy Day  Establish Project Team (Commissioner, Executive Chair, Level 4 Consultant PPM, APPM Rep, Specialist Nurse CPC, CEO Hospice)  Establish Critical Friends Team (Full YHCPCN Executive)  Develop information board for Parents’/Carers’ input and Babies, children and young people via the 4 hospices  Develop Draft for comment by Project Team and Critical Friends Team  Redraft Following Comment  Send out for period of consultation to Expert Reference Group  Redraft Following consultation period  Teams meet to discuss final draft and any further changes required  Final draft to go to Executive of the Network for sign off  Develop front facing easy read version of strategy.  Print both versions of Strategy and Action Plan Documents and circulate widely. Place documents on website. Period of promotion.

Appendix 2: Service Mapping Proformas sent to NHS Trusts

Clinical Provision: Current Specialist Children’s Palliative Care Provision In Yorkshire

QUESTION RESPONSE To Clinical Director: 1. a) Do you have a Children’s YES/NO Community Nursing (CCN) Name: team? (include specialist teams) Phone: b) If yes, who is/are the lead(s)? Email: c) If no, where do you direct children to with palliative care needs?

2. Is there a lead clinician for specialist YES/NO children’s palliative care in your Name: area? Phone: If yes, who? Email:

3. Is there a lead nurse for specialist YES/NO children’s palliative care in your Name: area? Phone: If yes, who? Email:

4. Are there bereavement services in your area? YES/NO Is there a bereavement nurse on the Name: neonatal ward? Phone: If yes, who? Email:

YES/NO Is there a bereavement midwife? Name: If Yes, who? Phone: Email: 5. Is there an EoL Group/ Network in YES/NO your area? Name: Phone: Email: 6. Which CCG’s cover the Hospital?

Lead Name: 7. What electronic patient record system do you use? i.e. system 1 To CCN Team Lead: (complete one form for each separate team) 8. What services does your CCN team provide?

9. What hours do you operate: a) Routinely during the week and weekend

b) Out of hours on call arrangements

c) For EOL care

10. How is OOH and EOL care paid?

11. What geographical area do you cover?

12. What age range do you cover? (antenatal-19?)

13. Is there a lead clinician for specialist children’s palliative care in your Name: area? Phone: If yes, who? Email: 14. Is there a lead nurse for specialist Name: children’s palliative care in your Phone: area? Email: If yes, who?

15. What Electronic patient record system do you use? i.e. system 1 16. Anything else?

Phone Calls:

Please return all completed forms to Davina Hartley on [email protected] by 31 May 2017.

Appendix 3 : Service Mapping Proformas sent to Hospice

QUESTIONS RESPONSE

1. What services do you offer?

2. How many beds for children do you have?

3. How many family rooms do you have?

4. What is your Eligibility Criteria? Can you please send me a copy?

5. What geographical areas do you cover?

6. What age range do you cover?

7. How many children/ families do you currently reach per annum?

8. What clinical/ medical cover do you have? A) is this out of hours?

B) If so what out of hours services do you offer?

9. Do you have access to 24/7 pharmacy services?

If yes how is this delivered?

10. Do you provide 24/7 specialist palliative care advice?

11. Do you have a psychologist? YES/NO Name:

Phone: Email:

12. Do you have any active participation YES/NO groups (parents/ young people)? Name: Phone: If yes who is the lead? Email:

13. What hours do you operate: Routinely during the week and weekend

Out of hours on call arrangements

For EOL care

14. What services are commissioned?

15. What data do you collect on families?

16. Anything else that you think may be useful?

Appendix 4: List of CDOP’s returning data

Bradford Barnsley Calderdale Doncaster East Riding Hull Kirklees Leeds Rotherham Sheffield York and North Yorks Wakefield North Lincs North East Lincs

Appendix 5: Views of the Professionals: What do people working across the Region in palliative care services tell us?

A Network Development day was held at St Gemma’s Hospice, Leeds in June 2017. 51 professionals working in palliative care from across the region attended. This included some new members from a variety of backgrounds including CDOP, CCG, Commissioning, Neonatal ODN Network, Bereavement Services and Local Authority Children’s Services. The aims of the day were to bring the current Network members together to discuss the future vision and strategy for the Network, to relaunch the Network and encourage new membership and to look at the various options for how we move the vision into action. The following are the themes and views provided on the day by the various professionals in attendance. These are not the views of the author nor the Network but the views of different professionals working across the Region and captured on that date.

What’s working well?

 Good choice of location for families,  Family voice is heard  Good perinatal care across Y and H  Importance of good EOL care  Education and training at Leeds Teaching Hospital Trust  Nurse led model of care  Increasing opportunities for nurse prescribers  Increasing availability of neonatal palliative care  24/7 cover where they have it (it was recognised that this is not equitable across the whole region). Not all areas have 24/7 cover. Not all diagnoses get equal care.

‘Excellent models of good practice include 24/7 nurse led support with home hospital attendance when needed not just on the phone, even at 2 am’

 Willingness to work together  People often go above and beyond to support families (It could be argued that this means the system is not working well as there shouldn’t be a reliance on good will, a recognition that these services should be commissioned and fully funded)  The transport services are good (Embrace and the Palliative care ambulance)  Hospice cover across the whole region is good and the option to use the ‘little rooms’ (cold rooms)  Having standardised forms such as the Limitation of Treatment Agreement Forms (LOTA)

What are the areas where we need to improve? Why are these important?

 Sudden (unexpected) death in A and E = a perceived lack of palliative care services. There is a lack of access to palliative care services for sudden unexpected death and often a lack of access to bereavement services for sudden deaths regionally.  24/7 care across region is not equitable. There is a postcode and diagnoses lottery.  Transition services could be improved.

 There is inequity in terms of access to psychology services  There are too many children are dying in hospital  Need more primary care representatives on the network  Awareness of the network could be improved  Standardisation of pain relief options needs improving  Commissioning and formal funding for sustainability rather than a reliance on good will is required  Increased hours for CCN teams and shared IT systems would be helpful

‘Commissioning commissioning commissioning’

 LTHT palliative care consultant needed  Not currently universal 24/7 cover and 24 hour medical cover  Collaboration could be improved (individual organisations are a barrier) less competition is needed and people being less protective of their patch. Drawing families into politics is not acceptable.

What should be the key components of an effective, evidence based future model of Paediatric Palliative and End of Life Care for children, young people and their families in Yorkshire and Humber? Top priorities for action.

Future model?  Equitable service across all postcodes and diagnoses (children with an oncology diagnosis have more access to required service provision than is the case for other diagnoses, which is clearly inequitable)  Fully funded and commissioned 24/7 care for all babies, children and young people.  Choice for children and families on where and when services are provided and choice for place of death (most families do not want their loved ones dying in hospital).  Parallel planning  Family centred services  Right leadership level represented on the Network  Regional sharing of best practice  Collaboration with families at the centre  Work together  Consistent paperwork and IT systems  Hub and spoke model  Agreed outcome measures and data  Champions for palliative care are needed, dedicated lead posts in all DGH’s for palliative care (consultant and nursing)  Any plans must have sustainable funding  It was felt it would be helpful to recognise that expertise for different areas lies within different hospices and that hospices should be working to these strengths

The strategy development day confirmed that the support for the vision within the network and across the region and that the value of working together to achieve it is recognised. The possible barriers to achieving this are a lack of funding and a lack of collaboration between some partners.

Appendix 6: Hospice Service Provision:

Bluebell Wood Forget Me Not Martin House St Andrews Sheffield Huddersfield Wetherby Grimsby ( Tel: 01909 (Tel: 01484 411042) (Tel: 01937 (Tel: 01472 517369) 845045) 350908) Ages 0 – 25 years Antenatal (20 weeks Antenatal (20 Neonate – 25 gestation) – 19 years weeks gestation) years for new referrals – 30 years (transition prior to 25th birthday) Catchment South Yorkshire West Yorkshire West Yorkshire N E Lincs Areas North Derbyshire North and Greater North Yorkshire N Lincs North Manchester and Hull Nottinghamshire East Yorkshire East Riding North Lincolnshire Lincolnshire Bassetlaw Number of 8 respite 4 plus 1 EOL bed 15 (plus 3 end of 4 Beds Plus 2 end of life life suites) suites No. of Family 4 2 9 2 Rooms

Community 24/7 medical on 24/7 telephone on 24/7 medical on 24/7 telephone Provision call cover call cover including call cover on call cover Community day home/hospital Community day Community day care attendance care care Sibling support Community day care Sibling support Sibling groups Sibling and family Breakfast club support Clinical 24/7 Nursing Consultant nurse Consultant Nurse Nursing cover Provision Cover Nursing cover 24/7 Nursing cover 24/7 Nurse Advanced nurse 24/7 Consultant practitioners

Clinical 0.5 W.T.E L 4 2 PA’s consultant in 1.1 WTE L4 Doctors 9-5 x 7 Provision Palliative palliative care Palliative care days Per Week GP/ Doctor/ Medicine 1 PA specialist consultant Consultant Consultant interest GP 1 WTE 0.1 WTE specialty Paediatrician doctor and 0.2 GP sp interest 24/7 on call cover Services Short breaks (at Short Breaks Short breaks Short Breaks home and at the (respite) (respite) (respite) hospice) Symptom control Symptom Symptom control Planned respite Hospice at home control/ support EOL care

Bluebell Wood Forget Me Not Martin House St Andrews Sheffield Huddersfield Wetherby Grimsby ( Tel: 01909 (Tel: 01484 411042) (Tel: 01937 (Tel: 01472 517369) 845045) 350908) Emergency EOL care EOL care Community day (unplanned) Counselling Psychology care and support respite Music therapy services Hospice at Home Symptom Control Complementary counselling Spiritual Care End of life care therapy Spiritual care Family Support Care after death Hydrotherapy Community Sibling Support Review Clinics Memory making support Bereavement Music therapy Dedicated Perinatal Memory making Support Play therapy Service including Artist in residence Memory making Counselling midwife support Family support Complementary Family support Music therapy Sibling support Therapy Sibling support Play therapy 72 hour EOL care Hydrotherapy at home Physiotherapy

Bereavement Bereavement Bereavement Bereavement Bereavement Support support offered support offered to support offered support offered to known families known families and to known families to all families those not currently and those not from across the registered with currently area hospice registered with hospice

Appendix 8: Results from the TfSL CCG study

5. Do you 7. Do you 12 & 13. Do you commission any of the following services for children with life-limiting or life-threatening conditions? If yes, please state which outcomes you ask service providers to achieve, how much you 14. Do you commission the 1. Do you 2. Do 3. Did you jointly commissi spent on them in 2016/17 and whether you commission them to provide to provide care out of hours and at weekends for children with life-limiting or life-threatening conditions? We define ‘out of hours and at following services to children commissi you have a ask for your 4. Do you commission 6. Do you on a rapid 15. Are A level 4 paediatric palliative Consistent with the Voluntary sector Emotional and Bereavement care - Bereavement care - Short on published sustainabilit assess palliative commissi transfer you care consultant NICE clinical Acute children’s Community children’s palliative Community psychological before a child has to families where a breaks Step- End of life palliative strategy or y and numbers and care for on end of process implemen guideline palliative care nurses children’s nurses care services paediatricians support died child has died (respite) down care care care for care transformati needs of children and life care for ting the children pathway for on plan to children and young at home if children NICE and children include PC young people with they wish and clinical young LLC? LLC? people with your local to do so? young Out of Out of Out of Out of Out of Out of Out of Out of Out of guideline CCG people (yes/no) (yes/no) LLC? authorities (yes/no) people to Yes/no hours? Yes/no hours? Yes/no hours? Yes/no hours? Yes/no hours? Yes/no hours? Yes/no hours? Yes/no hours? Yes/no hours? Yes/no Yes/no Yes/no ? 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