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 co-ordination 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 de-commissioning 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 non-specialist, 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 • Co-ordination 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 co-ordination 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 • Pre-emptive 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.