Palliative and End of Life Care Strategy (Draft)

Transcription

1 Attachment 13i Hywel Dda University Health Board and Partners Palliative and End of Life Care Strategy (Draft) V9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 1

2 PARTNER ORGANISATIONS V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 2

3 Hywel Dda University Health Board and Partners Palliative and End of Life Care Strategy Contents Page Foreword 4 1. Introduction 5 2. Background Information 7 3. Strategic Context 10 4 Definitions of Palliative and End of Life Care Priorities for Action Key Challenges for Hywel Dda and its Partners 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

4 Attachment 13i Foreword A workshop was held on 21 st 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

5 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 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 life 1. 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 : 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: [assessed 16th November 2009] V9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 5

6 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

7 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 study 2 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: V9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 7

8 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%. This demonstrated an improvement since 2012/13, when 24% of Hywel Dda patients were recorded as having died at home. However, it should be noted that studies indicate that up to 60% of patients express a wish to die at home, so this could be improved upon. During 2013/14, 51.2% (2012) of deaths within Hywel Dda occurred in hospital, compared with the All Wales figure of 56.9%. This shows a steady reduction since 2012/13, when 54% of deaths within Hywel Dda occurred in hospital compared with 58% across Wales as a whole. 2.2 Service Profile Hywel Dda University Health Board is divided into three counties for the management and delivery of primary care and community services: Carmarthenshire, Ceredigion and Pembrokeshire. The organisational structure for Acute Services, Mental Health and Learning Disabilities currently covers the whole Health Board. Each county has a Palliative and End of Life Care Integrated Planning Forum which feeds into the Hywel Dda University Health Board Palliative Care Strategic Group. A brief summary of the staff and services provided within each county by statutory and charitably funded bodies is shown in Appendix A. 2.3 Commissioning High quality palliative and end of life care depends on effective commissioning arrangements which support the development of palliative and end of life care services within the wider public health agenda. This should also build on the creative partnerships and collaborations which already exist between public, independent and community and voluntary service providers both regionally and in local communities. The role of commissioning is to secure the best possible health and social care within available resources. Driving up the quality and availability of palliative and end of life care so that it is responsive to patient needs and preferences is a key aspect of the health and social care commissioner s role and is the aim of all partners. V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 8

9 The effective commissioning of quality palliative and end of life care will depend on the development of robust service specifications for all service providers which identify the short and long term objectives of the service to be delivered, define the required performance and quality standards and specify how they will be measured. This will be linked to the standards for registered providers. 2.4 Funding Arrangements for Specialist Palliative Care Services Funding for hospices was previously directly distributed and monitored by Welsh Government. The Minister has agreed, on advice from the End of Life Care Board that with effect from 1 st April 2015 funding for hospices will be distributed and managed by Health Boards and NHS Trusts. Funding will be ring-fenced for three years and will continue to be allocated on the formula established by the End of Life Care Board. This will provide greater clarity in the governance of hospices, with Health Boards and NHS Trusts being accountable for the clinical governance of organisations from which they are commissioning services. It will also place hospices in a better position to work with Health Boards and NHS Trusts in service planning by encouraging greater engagement between them and hospice providers. The total allocation for specialist palliative care services for Hywel Dda University Health Board, the Paul Sartori Foundation, Shalom Hospice and the former Beacon of Hope Hospice amounts to 707,608 (2015/16). This is broken down as follows: Hywel Dda University Health Board 342,500 Paul Sartori Foundation 121,150 Shalom Hospice 162,060 Severn Hospice - Aberystwyth (Previously allocated to Beacon of Hope Hospice) 81,898 Total: 707,608 Included in the Health Board s allocation is funding for Marie Curie to provide Dementia Nurses to increase access for patients with Dementia to specialist palliative care, which was originally funded at support worker level but which Marie Curie match fund to appoint a qualified nurse in each county to undertake this role. Opportunities for future funding will be managed through each local Palliative and End of Life Care Integrated Planning Forum and presented to the Hywel Dda Palliative and End of Life Care Strategic Group for consideration. Their V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 9

10 recommendations will be submitted to the Business Planning and Performance Assurance Committee of the Health Board. 3. Strategic Context Historically palliative care services for adults were based on voluntary sector fundraising efforts. It was not until the late 1970s that government funding was given to support hospices. Hospices funded by the National Health Service (NHS) then joined those funded by Marie Curie Cancer Care, Sue Ryder Foundation and other independent charities. As the main drive to hospice development originally came from the non-statutory sector, this resulted in the ad hoc development of services which in some cases the NHS was then asked to support. The Calman-Hine Report (1996) set out a policy framework for the commissioning of cancer services. The document went on to highlight the need for planning, since hospice units had developed in an ad hoc manner, not necessarily in areas of greatest need. Although the report focused on cancer, it was recognized that palliative care was required by patients with any progressive life-limiting disease, so the same principles also applied to those with AIDS, motor neuron disease, endstage cardiorespiratory failure etc. The report recognized the specialist nature of palliative care provision and declared skills using a palliative care approach to be a core requirement of every health professional. The Palliative Care Implementation Board was established in July 2008 to deliver the recommendations of the Palliative Care Planning Report (Sugar Report) following its publication by the Welsh Government in The Report set out recommendations for palliative care provision in Wales, with clear actions up to In 2013, Together for Health Delivering End of Life Care: A Delivery Plan up to 2016 for NHS Wales and its Partners was published. The plan sets out the Welsh Government s expectations of NHS Wales, working with its partners and in particular the hospice and social care sector, to reduce inequalities in end of life care up to It sets out how patients and their families will be supported at the end of life, providing high quality care in all settings for people of all ages. The Delivery Plan provides a framework for action by Local Health Boards, NHS Trusts and Third Sector partners, recognising that no single service can deliver this plan in isolation. Only by working together can we make a difference. It sets out the Welsh Government s expectations of the NHS in Wales in delivering high quality end of life care, regardless of diagnosis, circumstance or place of residence in Wales. The plan is split into six areas: Delivery Theme 1: Supporting Living and Dying Well Delivery Theme 2: Detecting and Identifying Patients Early Delivery Theme 3: Delivering Fast Effective Care Delivery Theme 4: Reducing the Distress of Terminal Illness for Patients and V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 10

11 their Families Delivery Theme 5: Improving Information Delivery Theme 6: Targeting Research It sets out: Delivery aspirations; Specific priorities for ; Responsibility to develop and deliver actions; Population outcome indicators and NHS performance measures. Hywel Dda University Health Board s Local Delivery Plan was published in September 2013, setting out the actions to deliver on specific priorities as detailed above. [INSERT LINK TO WEBSITE]. The Health Board reports progress against the Local Delivery Plan milestones on an annual basis and the first Annual Report was published in June 2014 and subsequently August [INSERT LINK TO WEBSITE]. V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 11

12 Attachment 13i 4. Definitions of Palliative and End of Life Care Palliative care has been defined by the World Health Organization as an approach that improves the quality of life of patients and their families facing the problems associated with life limiting illness, through the prevention of, and relief of, suffering, by means of early identification and impeccable assessment and treatment of pain and other problems, physical and spiritual. 3 The palliative care approach and specialist palliative care have been described as being components of a range of palliative care provision. 4 The Palliative Care Approach The Palliative Care approach aims to promote both physical and psycho-social wellbeing. It is an integral part of all clinical practice guided by core palliative care principles of holistic care and supported by specialist palliative care. These core principles include: A focus on improving quality of life for patients and families through good symptom control A whole person approach Care that is humane and individualised with dignity at its core Respect for the person s autonomy and choice An emphasis on open and sensitive communication to include patients and those important to them, as well as professional colleagues involved in a person s care to ensure effective coordination of that care. The goal of palliative care is the best possible quality of life for patients and their families. Specialist Palliative Care Specialist palliative care is the active total care of patients with progressive, life limiting disease, and their families, by a multi-professional team, who have undergone recognised specialist palliative care training. It provides physical, psychological, social and spiritual support, and involves practitioners with a broad mix of skills including medical and nursing, social work, pastoral/spiritual care, physiotherapy, occupational therapy, pharmacy and related specialties. 5 Specialist palliative care teams also act in an advisory capacity to other healthcare professionals in both primary and secondary care and are actively involved in education, audit and research, relating to patients with progressive disease. 3 WHO definition of Palliative Care 4 WHO definition of Palliative Care 5 National Council s Occasional Paper 8, Specialist Palliative Care: A Statement of Definitions 6 National Council for Palliative Care 2006, cited in DOH 2008 V9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 12

13 Palliative care differs in philosophy from curative strategies in focusing primarily on the consequences of a disease rather than its cause or specific cure. Approaches are therefore necessarily holistic, pragmatic and multidisciplinary. The approach complements oncological or antiviral treatments; it does not substitute for or replace them. End of Life Care is defined as care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of atients, carers and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. 6 The definition of the beginning of end of life care is variable but generally relates to the last year of life. The following therapy services exist within the Health Board Dietetics, Occupational Therapy, Physiotherapy, Podiatry and Speech and Language Therapy. All of these therapies will have palliative care patients within their remit of service delivery both within primary and secondary care settings. This will include all ages and across all specialities. There are variations across services in terms of service structure and design but all will include both palliative and specialist palliative patients within an integrated provision of care. Some services have dedicated specialist palliative care therapists e.g. Occupational Therapy. However all therapies include palliative patients within agreed pathways of referrals and agreed prioritisation processes in order to ensure timely and appropriate assessment, intervention and modification of treatment approaches as relevant. This will include advice and support to patients, family, carers and others involved within the care of patient. Each service area should have joined up systems of approach to ensure holistic and person centred care and support to ensure seamless and transparent working together for patient. V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 13

14 5. Priorities for Action 5.1 All Wales Priorities The Hywel Dda University Health Board Together for Health Delivery Plan, published in September 2013, sets out action to improve outcomes in the following key areas between 2013 and 2016: 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 identified early to enable the best care to be 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, families and carers; patients entering the terminal phase of their illness and their families feel well cared for; 5. Improving Information; 6. Targeting research. 5.2 Local Stakeholder Priorities A Workshop was held on 21 st January 2015, which was attended by a wide range of service providers across the Hywel Dda area. This new collaborative approach has highlighted the following themes which will underpin the future commissioning strategy of the Health Board with the aim of improving palliative and end of life care: To implement the new All Wales DNACPR Policy; To roll out the multi-disciplinary Core Curriculum Training Programme across all three counties; To ensure best practice guidelines are referred to; To ensure timely access to GP Out of Hours and Acute Response Services; To improve recruitment and retention with specific reference to Consultants in Palliative Medicine; To develop a range of medical and nursing models; To improve communication across all sectors including patients and the general public; To explore the flexibility of using telemedicine as a means to provide palliative care support to patients and their families from their own homes or community settings; V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 14

15 To ensure effective communication for individuals with specific needs including those with mental health issues/dementia, learning difficulties; physical disabilities; sensory loss etc; To improve access to and sharing of clinical information; To improve timely access to benefits advice; To develop patient pathways with the Welsh Ambulance Service NHS Trust; To ensure access to non-emergency patient transport; To expand Bereavement Care, including anticipatory grief service; To ensure access to Spiritual Support at the appropriate time; To promote the use of Advance Care Planning (ACP) in primary and secondary care; To ensure the ACP documentation on the Health Board s website is accessible to staff and the public and is up to date; To ensure carers needs are assessed and supported, including young carers; To strengthen children s palliative care services; To improve the transition pathway between adolescence and adulthood; To improve transition and communication across providers and care settings, including the education sector in regard to children and young people; To optimise the uptake of Just in Case Boxes; To ensure rapid access to equipment in the Community; To develop a mechanism to provide the Specialist Palliative Care input in the form of Palliative Care Consultant, GP with Special Interest and Clinical Nurse Specialist into Accident and Emergency/Clinical Decisions Unit and acute wards; To raise awareness of the need to identify those at risk of dying within the acute setting to the Specialist Palliative Care Team; To secure sustainable funding streams for palliative and end of life care services across the Health Board; To ensure that future staffing requirements for specialist palliative care staff are included as a priority in the Health Board s Workforce Plan; To improve the recruitment and retention of specialist staff; To incorporate quality assessment mechanisms into service planning and delivery; To ensure services are planned on the basis of anticipated future demand; To ensure access to a palliative care consultant throughout the 24 hour period; To ensure access to a clinical nurse specialist in palliative care seven days a week; To ensure equity of access to palliative and end of life care services across all seven localities/three counties; To carry out an Equality Impact Assessment on palliative and end of life care services; V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 15

16 To promote research and audit opportunities including clinical trials. This partnership will continue to work collaboratively to develop and monitor the implementation of this strategy and the above actions. Sub-groups will be established to take forward the actions and priority areas identified, to ensure that continuous service improvement is achieved. 5.3 Individual Organisation s Priorities (Query inclusion of this section Either in this section or next as the document is a palliative and end of life strategy, to reflect true partnership working, it is vital to incorporate current plans and priorities of all partner organisations for the period to 2018 to gain a full understanding of what is current and planned across Hywel Dda. The following priorities have been identified by partner organisations: Marie Curie: Increase the reach of the Marie Curie Information and Support service; Reduce inequities in access to palliative and end of life care, particularly for people with a terminal illness other than cancer; Develop and adopt o quality and outcome indicators focusing on palliative care for people with all terminal conditions and o a robust measure of need for specialist and generalist palliative care across Wales; Work towards implementing the principles of prudent healthcare in palliative and end of life care, as long as this produces the best outcomes for people with a terminal illness. Need to add information from the following (or do we exclude this whole section)? Macmillan Cancer Support Paul Sartori Priorities are:- Work with other providers to ensure end of life support is provided to the people of Pembrokeshire in their preferred setting Sustain existing services (nursing, counselling, physiotherapy, equipment loan, complementary therapy, advance care planning support), ensuring they are timely and consistent with changing needs, best value and the clinical evidence base Expand the provision of free/affordable training to external organisations, especially care homes and domiciliary care agencies V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 16

17 Develop criteria and operational models for increasing support to:- People with dementia Care home residents Family carers Identify ways to meet the challenge of a diminishing nursing/care staff workforce across Wales Increase grant income from charitable trusts, thus maintaining diverse sources of funding, without undue dependence on any single one Transfer to premises which will provide the facilities needed to support all of the above Severn Hospice - Ceredigion Shalom Skanda Vale Priorities are:- To provide choice to patients and their families regarding choice of place of care by completing a 6 bed nurse led palliative care unit which will offer the following:- Phase 1 to offer day care on two days every week and one week of respite care per month from Spring 2016 Phase 2 to offer day care on two days every week and respite and end of life care 24/7 from Spring 2017 To expand the current patient transport service that allows patients to access services provided by Skanda Vale Hospice. To work with children s services to establish an effective pathway for young adults with life-limiting conditions to access respite and end of life care. To explore and evaluate new methods of delivering a palliative care service through the use of volunteering and community engagement. To develop and deliver an effective and ongoing education and development programme for volunteers in palliative care. V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 17

18 Attachment 13i 6. Key Challenges for Hywel Dda and its Partners The main challenges facing Hywel Dda and its partners are the demographic projections with significant increases in older people, particularly in the over 85s, during the next twenty years and the rural environment within which services are provided. The main challenges within this context are as follows: Ensuring that there is equitable direct or indirect statutory investment in services across all three counties and all seven localities; Ensuring that Advance Care Planning is promoted and facilitated effectively to enable people to express their wishes and care preferences and make them known, so that care can be planned and managed according to individual need; Maintaining and developing partnership working across public, private and third sector organisations in order to better co-ordinate care; Ability to recruit and retain clinical staff in all areas, including access to psychological services; Training and education ensuring adequate resources to support the provision of multidisciplinary training for the NHS and its partners and also the cost of releasing staff to attend training courses; Securing sustainable funding. V9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 18

19 Attachment 13i 7. Conclusion This Strategy will inform the future commissioning intentions of the Health Board, based on the principles of prudent healthcare. A Hywel Dda-wide Palliative and End of Life Care Strategic Group has been established during 2015 to facilitate the strategic coordination and delivery of services across the Health Board area. This will continue to be supported by all stakeholders. The Health Board s End of Life Care Delivery Plan is refreshed annually and published on the Health Board s website in December. It provides a framework for action by the Health Board working together with its partners and contains a detailed action plan. In response to the Delivery Plan, an Annual Report is produced in July each year to summarise the Health Board s progress against the action plan and to present an overview of how well the Health Board is performing in this area. It also highlights the work that the Health Board has undertaken over the past twelve months in reviewing current service provision and identifies where service provision needs to change to meet demand. Our intention is to ensure that plans will demonstrate an ongoing commitment to continuous improvement and that they are pragmatic, robust, with clear timescales and that they are patient centred. Whilst recognising the challenges, we believe that with the commitment of all Stakeholders and the strong partnership working that has developed locally, we will be in a strong position to strive for continuous improvement in the delivery of palliative and end of life care for our population. V9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 19

20 Appendix A Summary of Staff and Services Palliative and End of Life Care 5 Staff/Service Carmarthenshire Ceredigion Pembrokeshire Medical Staff 1.2WTE Palliative Care Consultant 0.3WTE GP with Special Interest 1.0WTE Palliative Care Consultant 1.0 WTE Palliative Care Consultant (in-house) plus 0.45WTE to support the Shalom House Respite Care and Day Care services One session per week for a Consultant Paediatrician with a Palliative Care Interest across Hywel Dda Specialist Nurses 12wte Clinical Nurse Specialists Palliative Care (Macmillan) - Adults 1wte Paediatric Palliative Care Nurse; District Nursing Core District Nursing services Therapies Social Services With the exception of occupational therapy who have Macmillan funded palliative care post, general (not specialist) therapy services support patients palliative care needs although this is not equitable across the Health Board Social Workers/Benefits Advisers Pharmacy Macmillan trained Community Pharmacists Lead Palliative Care Pharmacist Hywel Dda University Health 5 Based on staff profile September 2015 V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 20

21 Board Day Hospice/ Hospice at Home Carmarthenshire Ceredigion Pembrokeshire Hospice at Home service; Ty Cymorth Day Hospice; Ty Bryngwyn Day Hospice Home service under development in north Ceredigion Paul Sartori Hospice at Home service; Shalom House Respite Care and Day Care services Skanda Vale Day Care plus a new development of 6 inpatient beds in progress to be commissioned Spring 2016 Inpatient beds 6 Specialist Palliative care beds at Ty Bryngwyn; 2 Palliative Care beds at Amman Valley Hospital; 1 Palliative Care bed at Tregaron Hospital; Commissioned beds in the independent sector Palliative care beds within community hospital and commissioned in the independent sector 2 Palliative Care beds at Llandovery Hospital Bereavement Services Spiritual Care A Chaplain (accredited by the Association of Hospice and Palliative Care Chaplains AHPCC) is available to provide pastoral, spiritual and religious care to all patients, visitors, staff and volunteers in the Day and Inpatient Units, Acute and Community Hospital settings regardless of faith or life stance. Support can be offered to Health Board Community Staff and partners. Contracts with external bodies Marie Curie; Crossroads; British Red Cross Marie Curie; Severn Hospice Marie Curie; Paul Sartori Foundation; V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 21

22 Shalom House Children s Hospice Service: Ty Hafan (Cardiff), Hope House (Oswestry) and Ty Gobaith (North Wales) All Palliative children aged 0-8yrs across Hywel Dda have a choice to access: The Community In-reach, Out-reach Nursing Service (COINS) for Palliative Care COINS support children and young people aged 0-25yrs who require care in the last days of their life. This is in partnership with the Paediatric Oncology Outreach Nurse Specialist and the Clinical Nurse Specialist for Paediatric Palliative Care. The initiative originated from an audit which indicated that 50% of parents caring for their dying child in hospital would have taken the child home if 24 hour nursing support was available. This service is unique to Wales and is in addition to the support and care that children s hospices provide. At this vulnerable time, families often wish to be supported within their own home and community. And also Ty Hafan offers a holistic palliative care service to life limited and life threatened children and young people from across Wales. The support encompasses specialist nursing support, end of life care, symptom management, step down care and a short break care service. Families, including siblings, can also access a range of practical and psychological support in the community from the time of diagnosis through bereavement and for as long as it is needed. Ty Hafan, Hayes Road, Sully, CF64 5XX. Tel: 44 (0) Hope House and Ty Gobaith offer a range of services including respite and end of life care at our two hospices and/or within the family home, and support such as counselling and advocacy. Bereavement support is offered to all children, young people and family members for as long as is needed. They provide specialist nursing care and support to life limited children, young people and young adults. The support extends to the whole family from diagnosis, throughout the lifetime of the child and beyond. Hope House, telephone , care@hopehouse.org.uk Hope House, Nant Lane, Morda, Nr Oswestry, Shropshire, SY10 9BX V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 22

23 Ty Gobaith, telephone number , Ty Gobaith, Tremorfa Lane, Groesynydd, Conwy, LL32 8SS V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 23

24 GLOSSARY OF TERMS Term Definition ACP AWPCPG CaNISC CNS DATIX DNACPR GP HDUHB ICP IT MDT NHS ONS OoH PCIB PCIG PEDW PIG POONS PTL QOF QP READ Codes Advance Care Plan All Wales Palliative Care Pharmacy Group Cancer Network Information System Cymru Clinical Nurse Specialist Clinical Incident Reporting System Do Not Attempt Cardio-Pulmonary Resuscitation General Practitioner Hywel Dda University Health Board Integrated Care Priorities Information Technology Multi-Disciplinary Team National Health Service Office for National Statistics Out of Hours Palliative Care Implementation Board Palliative Care Implementation Group Patient Episode Database for Wales Prognostic Indicator Guide Paediatric Oncology Outreach Nurse Specialist Protected Time for Learning (Primary Care) Quality and Outcomes Framework (Primary Care) Quality and Productivity Framework (Primary Care) READ codes are the standard clinical terminology system used in Primary Care in the United Kingdom V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 24

25 SLA Service Level Agreement V 9 DRAFT Hywel Dda University Health Board Palliative and End of Life Care Strategy December 2015 Page 25