Attachment 13i Hywel Dda University Health Board and Partners Palliative and End of Life Care Strategy (Draft) 2015-18 V9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 1 PARTNER ORGANISATIONS V 9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 2 Hywel Dda University Health Board and Partners Palliative and End of Life Care Strategy 2015-18 Contents Page Foreword 4 1. Introduction 5 2. Background Information 7 3. Strategic Context 10 4 Definitions of Palliative and End of Life Care 12 5. Priorities for Action 14 6. Key Challenges for Hywel Dda and its Partners 17 7. Conclusion 18 Appendices: Appendix A: Service Profile Glossary of Terms V 9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 3 Attachment 13i Foreword A workshop was held on 21st January 2015 to begin the development of a Strategy for Palliative and End of Life Care for Hywel Dda University Health Board and its partners. This was attended by over forty participants representing commissioners and service providers across the Hywel Dda area. This is the first time that all partners have collaborated in the development of a clinical services strategy on which future commissioning intentions will be based. This unique approach has proved to be extremely effective in bringing organisations together and has captured shared ambitions for service improvement for patients and their families. Integrated working across statutory, voluntary and third sectors is essential to maximise the use of resources and reduce duplication, providing a variety of care provision and using local resources to meet local needs. It is acknowledged that there will be significant resource challenges facing the service in the future, with increasing demand and declining workforce etc. and these will be assessed and factored into future planning assumptions. It is increasingly important that this strategy delivers for patients who require palliative care and end of life care, that families can access safe high quality care supporting their loved ones wherever they live or die. This strategy requires a mixed economy approach to commissioning. It is essential that all the partners who joined us in the collaborative to develop this strategy recognise their need to be mature in the commissioning response to ensure the best outcomes for the patients and carers of Hywel Dda. Bernardine Rees Chair of Hywel Dda University Health Board V9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 4 Attachment 13i 1. Introduction “Together for Health – End of Life Care Delivery Plan” published in April 2013 sets out the vision for end of life services in Wales until 2016. Three high-level outcomes are being monitored to track performance over time. These are: Whether people are cared for and die in their preferred place of care, whether that is at home, in hospital, a hospice or other care settings; The number of individuals whose care is supported by integrating their care priorities prior to their death and recognising the inevitable closing of their life; and What individuals and their families and carers say about the care they receive. Hywel Dda University Health Board‟s (HDUHB‟s) vision for Palliative and End of Life Care Services is that any patient, from diagnosis to the advanced non-curative stage of disease, lives well and dies well irrespective of their condition or care setting. This requires a philosophy of care that is patient-centred and which takes a holistic approach to the planning, co-ordination and delivery of high quality, safe, reliable care that enables people to retain control, dignity and choice in how and where their care is delivered to the end of their life1. Our vision for end of life and palliative care is that: People have a healthy, realistic approach to dying, planning appropriately for the event; and People who are dying have access to high quality, safe care wherever they live and die; whatever their underlying disease or disability, devoid of any prejudice in relation to their personal situation. Making this vision a reality requires ownership and leadership at all levels of policy, planning, commissioning, education and delivery of palliative and end of life care. This will involve commitment to change culture and practice in the following six key areas, which are the key delivery themes in the Together for Health End of Life Care Delivery Plan 2013-16: 1. Supporting living and dying well; informing and supporting patients to make arrangements in advance for the end of life; 2. Detecting and identifying patients early; people with palliative care needs are 1 Northern Ireland Cancer Network (2008) Diagnosing Dying – Defining End of Life Care; Supportive and Palliative Care Network Group. Available online: http://www.cancerni.net/publications/definingendoflifecareforpeoplewithcancerandnoncancerdiagnoses [assessed 16th November 2009] V9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 5 identified early to enable the best care and a seamless approach planned in advance; 3. Delivering fast, effective care - People receive fast, effective person centred care in order to maintain quality of life for as long as possible; 4. Reducing the distress of terminal illness for patients, their families and carers; patients entering the terminal phase of their illness and their families feel well cared for; 5. Improving Information for patients, families and carers; and 6. Targeting research. Delivery on the above themes requires coordination of all resources at multiple levels: Patient experience level; Local service delivery level; Strategic service planning level; Data collection and interpretation. Whilst acknowledging the lead role of HDUHB, it is acknowledged that much care is delivered through the voluntary sector who also lead on service innovation. True partnership working reflects the nature of a shared vision, meaning all services working towards the same goals to provide consistent outcomes for patients and their families. It is about „the right care being delivered to the right people at the right time in the right setting by the right people‟. Through partnership working, the following values have been identified. All partners recognise that success in partnership working requires: Inclusion; Recognition; Honesty, openness and transparency; Shared vision; Shared aims and objectives and direction of travel; Good leadership/role model; Shared responsibility; Trust These will be the values on which the implementation of this Strategy will be based. V 9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 6 Attachment 13i 2. Background Information 2.1 Population Profile Each year around 32,000 people die in Wales and around 250 of these are children and young people. Care at the end of life has improved greatly since 2008 (??? citation?), when Welsh Government invested significantly in specialist palliative care services to ensure that there is a service across Wales available to give advice to those professionals caring for patients in their homes, in hospices and in hospitals across Wales on a 24/7 basis. The investment has also supported the provision of 7- day specialist palliative care services. In some parts of Wales the numbers of patients receiving their end of life care at home is increasing. Direct feedback from patients and their families about specialist palliative care services in Wales has shown over the past year that these services make an enormous difference to people‟s quality of life in their closing days. Many people report receiving excellent care as their life draws to a close, with holistic care for people and their families. For children, the majority of those who die in contact with health services are very premature babies, children and young people in paediatric intensive care units, or with disability or cancer. The need for well-managed end of life care and bereavement support is paramount to the long term well-being of parents and families. There is evidence to show that a greater number of children with life-limiting conditions are now surviving into adulthood. The recently issued first national End of Life Care Annual Report stated that: Around 32,000 people die in Wales each year; this equates to 87 people a day; More than half of these die in hospital; Of the 32,000 people who die each year over 20,000 (almost two-thirds) are aged 75 and over; The majority of deaths follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia; About 37% of deaths occur in people‟s usual place of residence, either at home (23%) or in nursing/care homes (14%); 57% of deaths occur in NHS hospitals; and 6% of people die elsewhere (including hospices); A recent study2 suggested that 75% of people dying have some form of palliative care need; this would mean that of the 32,000 people who die in Wales each year, about 24,000 will have palliative care needs. 2 How many people need palliative care: http://pmj.sagepub.com/content/28/1/49 V9 DRAFT – Hywel Dda University Health Board Palliative and End of Life Care Strategy – December 2015 Page 7 It is acknowledged that preferences do change and choice may change over time for a number of reasons. Also, although we are able to measure where people die, the Health Board does not consistently record or measure if this was necessarily where they wanted to die. It should be noted that some providers do record and report on place of death versus preferred place of death. Hywel Dda University Health Board‟s second Annual Report published in August 2015 showed the following: During 2013/14, 26.5% (1039) of Hywel Dda University Health Board patients died at home, which is higher than the All Wales position which was 22.6%.