Cwm Taf University Health Board End of Life Care Delivery Plan/Progress Report Name of Health Board: Cwm Taf University Health Board Contact details : Lindsey.M.Richardson@wales.nhs.uk Clinical Lead End of Life Care : Dr Ian Back Advance Care Planning Lead: Dr Ian Back 1. Overview Excellent progress has continued to be made in Cwm Taf against the priorities set out in the End of Life Care Delivery Plan. A key focus has been on promoting and embedding Advance Care Planning into practice, and in enabling people to receive their end of life care at home if preferred. This has been achieved through the sharing of ACPs with key care givers including the Wales Ambulance Service; enhancing the provision of Hospice @Home services in conjunction with Marie Curie, and enabled by provision of timely transportation by the WAST enhanced Non Emergency Patient Transport service; and ensuring timely access to palliative care medication. Funding has been secured from Macmillan and Welsh Government for the development of a new build flagship specialist palliative care unit on the Royal Glamorgan Hospital site, to replace the current Y Bwthyn unit in Pontypridd. 2. Key Achievements in 2016-17 Progress with National Priorities Supporting Living and Dying Well Advance Care Planning (ACP) our main focus under the theme of Supporting Living and Dying Well has been to promote and embed the principles of Advance Care Planning into practice. Our Macmillan funded ACP Clinical Nurse Specialists, appointed in 2014, have successfully raised the profile and understanding of ACP processes across the health board, primary care and care homes, and increased the number of ACPs completed and implemented. Cwm Taf was the first and remains the only health board in Wales to share its ACPs with the Welsh Ambulance Service, for both adults and paediatrics. 1
Detecting and Identifying Patients Early GP Palliative Care Registers the effective use of palliative care registers has continued to be promoted with our primary care colleagues along with the Prognostic Indicator Guidance developed by our Macmillan GP Facilitators. Delivering Fast, Effective Care Hospice @ Home service with the help of Welsh Government investment a fast track discharge service has been established in conjunction with Marie Curie and the health board s district nursing service, enabling more patients to receive hospice style care at home, if that is their preferred choice. In 2016/17, 74 patients were fast tracked for discharge from hospital to receive end of life care at home. EOLC Dying in Hospital Audit in October 2016 Cwm Taf UHB participated in the first all Wales audit of end of life care in acute hospitals. The Royal College of Physicians audit tool was used, adapted for applicability to NHS Wales, to review 25% of all adult acute deaths in the period amounting to 35 case notes. The audit reviewed 132 variables across the domains of recognition of dying; communication; decision making and its documentation; meeting the needs of families and others; individual plan of care for the dying person. This audit showed a significantly higher rate of patients dying with multiple co-morbidities in Cwm Taf compared to the rest of Wales, which implies a greater complexity of care needs. There is good evidence of recognition that the patient was dying; communication and discussion with families / nominated persons; support for families and those important to the individual at the time of and immediately following the death; and completion of individual care plans. However there was less documented evidence of discussion with the patient that they were dying or given the opportunity to have their concerns listened to. The audit findings are being shared with acute hospital colleagues and any potential improvements, including consistency and completeness of documentation, being considered. Macmillan Highly Specialist Speech & Language Therapist for Oncology and Palliative Care with Macmillan support, Cwm Taf UHB is piloting this unique and innovative post to scope and evidence the need for specialist speech and language therapy input to oncology and palliative care patients, to maximise their swallowing and communication potential. The post has received positive feedback from patients and staff, is achieving wellbeing gains for patients, is helping to avoid aspiration related admissions and reduce pharmacological spend. Reducing the Distress of Terminal Illness for Patients and their Families Communication Skills in addition to the training provided by our ACP CNS s, our Macmillan Clinical Psychologist ran a monthly training programme for staff covering breaking bad news, risk identification etc, and ran a 2 day Motivational Interviewing course with the Academy of Health Coaching. Learning from Complaints In Cwm Taf UHB we devised a system to capture any formal complaints relating in some way to delivery of End of Life Care and enable lessons to be learned and improvements made. In 2016/17, 15 such complaints were noted, falling into 3 main categories: concerns about the 2
standard of care received in the palliative/end of life care stage; concerns about communication with the patient/family; and families perceptions that delays or decisions about diagnosis and treatment may have contributed to the patient s death. Although not all of these complaints relate directly to how the patient s end of life care was managed, they provide a useful insight into families perceptions of their loved one s care experience and prompt consideration by the Specialist Palliative Care Team and End of Life Care Delivery Group as to whether any follow up action is required, such as education or awareness raising. To date the Delivery Group has been reassured that there are no emerging themes or patterns to address. Bereavement Survey our lead Palliative Care Consultant devised (with permission) an online survey based on the VOICES survey in England which was piloted with the support of the Registrar s Office. Access to Pain Relief Medication Cwm Taf UHB representatives have been actively involved in the national review of Just In Case boxes and meanwhile anticipatory prescribing or Just in Case boxes are used to ensure timely access to palliative care medication. A list of pharmacies offering out of hours access to medications is provided to GPs and Out of Hours services. Progress with Local Priorities Macmillan Y Bwthyn Specialist Palliative Care Unit in January 2017, Macmillan Cancer Support announced their commitment to providing 5m towards the development of a new Specialist Palliative Care unit in the grounds of the Royal Glamorgan Hospital, to replace the current Y Bwthyn unit at Pontypridd Cottage Hospital. This will be Macmillan s biggest single investment in Wales. The planning application for the development was submitted in March 2017. Collaborative working between Statutory and Voluntary Sector Macmillan Cancer Support significant funding has been provided by Macmillan over recent years to support cancer and palliative care services in Cwm Taf. This includes funding for a range of specialist healthcare professionals, non-clinical support staff, the acute oncology service and proposed new palliative care unit. As well as key members of the Y Bwthyn Project Board, Macmillan are represented on the Cwm Taf End of Life Care Delivery Group. Marie Curie Cwm Taf UHB holds a Service Level Agreement with Marie Curie to provide hospice @home nursing care in conjunction with our District Nursing Service, enabling people to be cared for and to die at home. We have recently agreed to appoint a Nurse Co-ordinator responsible for case management of the patients, working closely with the CHC team, District Nurses and members of the multi-disciplinary team. Hospice of the Valleys the UHB has commissioned Hospice of the Valleys to provide end of life care education to care home staff across Cwm Taf. 3
3. The Challenge for Cwm Taf End of Life Care Delivery Group Overall, health in Wales and in Cwm Taf is improving and life expectancy is increasing. However these improvements have not been achieved equally for all people, and there is evidence of health inequalities in the more deprived areas of Cwm Taf. Cwm Taf UHB remains the health board with the lowest life expectancy (76.6 years men, 80.9 years women) and healthy life expectancy (61.2 years men, 62.6 years women) in Wales. Across Cwm Taf the inequality gap (difference between the most and least deprived) for life expectancy is 7.4 years for men and 3.7 years for women. However for men in Rhondda Cynon Taff, the gap has increased to 7.8 years. The gap for healthy life expectancy is 14.8 years for men and 15.0 years for women. In Wales, around 32,000 people die each year, including around 3,200 in Cwm Taf. Of these 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. There is a high prevalence of such diseases amongst our local population. It is estimated that 75% of people dying have some form of palliative care need. This would mean that of the 3,200 people who die in Cwm Taf each year, about 2,400 will have palliative care needs. In 2016/17, as in previous years, most deaths in Wales occurred in hospital (average 55%). At 61.6%, Cwm Taf has the highest percentage in Wales of people dying in hospital, however this has reduced from 65.1% in 2013/14. Cwm Taf also has no voluntary sector hospices in area which offer an alternative to hospital admission in other areas. There has been a corresponding increase in the percentage of people 4
dying in their own home, from 20.3% in 2013/14 to 22.4% in 2016/17. However Cwm Taf has the lowest percentage of people dying in their care home: 12.1% compared with the Wales average of 16.9%. Place of death Hospital Home Care Home Specialist Palliative Care bed % of deaths Cwm Taf 2013/14 Cwm Taf 2016/17 Wales 2016/17 65.1% 61.6% 55% 20.3% 22.4% 23.6% 10.5% 12.1% 16.9% 2.4% 2.6% 2.7% Enabling people to receive their end of life care and to die in their preferred place is a key priority both nationally and locally. This requires : Increased awareness and acceptance amongst the general population of the need for a healthy realistic approach to dying. We will support the Byw Nawr/Dying Matters campaign encouraging people to talk openly about the uncertainties in serious illness and to make plans for the last phase of their life; Advance Care Planning to ensure an individual s personal preferences for their end of life care, including preferred place of death, are expressed, recorded, shared with and understood by those who need to know, eg family, care staff, health professionals, Welsh Ambulance Service. The availability of hospice @home style services and effective pathways to enable people to be cared for and to die at home if that is their preference. Timely access to palliative care medications 4. Areas for Improvement The Cwm Taf End of Life Care Delivery Group s priorities for the next 5 years, as set out in sections 5 to 7 below, reflect the key areas for improvement which are: Byw Nawr / Dying Matters doing more to promote the campaign locally throughout the year Advance Care Planning continuing to embed ACP within mainstream practice Hospice @Home ensuring people are able to be supported to die at home if that is their preferred place of death Access to Palliative Care Medicines ensuring consistency and timeliness of access for patients in all care settings Modernisation of Palliative Care services through a thorough review of current services and practices, and modernisation of the estate 5
5. Priorities for 2017-18 National Priorities Priority 1 - Advance Care Planning Byw Nawr / Dying Matters Week Cwm Taf UHB took part in Dying Matters Week (8-12 May 2017) holding events in two care homes; manning information stands in three hospitals; promoting Dying Matters through use of social media and attendance at the Byw Nawr conference. The local Macmillan Mobile Unit was also in action across the area during the week. Consideration is now being given as to how to continue promotion throughout the year, through the use of information stands and social media. Advance Care Planning CNS - the 3 year funding for the Macmillan Advance Care Planning (ACP) CNS posts ended in August 2017. The ACP role is now being incorporated into the @Home service and a former RBID post is being redesigned to provide the lead for ACP including training, education, specialist support and links to national groups. We will continue to promote ACP and ensure that ACPs are shared with key care givers, including WAST, to ensure people s care preferences are communicated and adhered to. Priority 2 - Reducing admissions to Acute Hospitals at the End of Life and supporting patients to remain in their place of residence Hospice @Home improved provision of services that enable people to receive their end of life care at home (or care home) enables both timely discharge from hospital as well as avoidance of admission to acute hospitals. We will continue to monitor and evaluate the Hospice @Home service provided by our District Nurses in conjunction with Marie Curie to ensure service capacity and timeliness and quality of care. WAST Rapid Transport pilot Cwm Taf UHB is one of 4 health board areas involved in piloting an End of Life Care Rapid Transport Ambulance pilot, with the Welsh Ambulance Service. The service, provided by the Non-Emergency Patient Transport Service (NEPTS), enables timely transfer of end of life care patients to their preferred place of death. All such transfers to date have been completed within 2 hours of the request. The pilot which commenced in Summer 2017 will be evaluated with a view to rolling out across Wales. Priority 3 Measuring Success Outcome measures we are working at a national and local level to identify a meaningful set of performance indicators and our consultants are also leading the work to develop a national set of patient related experience and outcome measures (PREM/PROMs) Priority 4 Bereavement Care Bereavement Survey the online Bereavement Survey will continue to be rolled out, and responses analysed to identify areas of good practice or need 6
for improvement in end of life care, and to help inform the need for bereavement counselling services Review of Bereavement Services the bereavement counselling service commissioned from Cruse is being reviewed along with other mental health related third sector services, to determine future commissioning plans. Priority 5 - Education EOLC Education in Care Homes a series of End of Life Care education sessions for care home staff across Cwm Taf have been commissioned from Hospice of the Valleys and delivered in conjunction with the Cwm Taf Macmillan ACP Nurses. The sessions have evaluated very well however attendance across the sector has been variable. Consideration is therefore being given as to how to maximise attendance at the remaining sessions. Advanced Communication Skills - 5 Connected Advanced Communication Skills Training Courses have been run within Cwm Taf UHB funded via Macmillan Cancer Support Group Grants with approximately 50 members of staff being trained by November 2017. Facilitators were brought in from England to run the courses which are considered to be the gold standard courses in advanced communication skills. The 2 day course includes breaking bad news training staff to communicate effectively with patients and relatives/carers at the worst possible times and also to undertake difficult conversations effectively. The courses have been attended by a range of staff including Consultants, Specialist Cancer Nurses, staff from within Specialist Palliative Care, Hospital Chaplains and Patient Advice and Liaison staff. Priority 6 Digital Technology NWIS our Palliative Care consultants are actively involved in the national work to improve data collection and information sharing. Priority 7 Research Audit Cwm Taf UHB will participate in the national EOLC in Hospital Audit. The Therapies team is also piloting its own internal audit to review and evaluate compliance against the domains of care in the Cancer Standards for Wales Local Priorities Macmillan Y Bwthyn Specialist Palliative Care Unit - Planning approval was received in July 2017 for the unit and a business case for the remaining 1.7m has been approved by the Cabinet Secretary in October 2017. Following appointment of the contractors the enabling works are due to commence in October/November 2017. Macmillan End of Life Care Modernisation Manager funding was secured from Macmillan Cancer Support for an End of Life Care Modernisation Manager post to review current palliative and end of life care services and pathways with a view to establishing and embedding a new model of care. The post has been 7
successfully appointed to from October 2017 and the work programme for the post holder is being finalised. 6. Priorities for 2018-19 National Priorities Cwm Taf UHB will continue to address the national priorities: Promotion of Byw Nawr / Dying Matters Continued promotion, roll out and evaluation of Advance Care Planning Monitoring and evaluation of the Hospice @Home service Monitoring and evaluation of access to palliative care medications Collection and reporting against outcome measures, PREMs and PROMS Evaluation and continuation of the WAST rapid transport service Ongoing education Use of and participation in audit and research Local Priorities Macmillan Y Bwthyn Specialist Palliative Care Unit continuation and completion of the build by Spring 2019, and planning for the transfer of services provided from the existing Y Bwthyn Palliative Care unit to the new unit at the Royal Glamorgan Hospital Ongoing Review of palliative care services, pathways, processes NB an updated set of priorities for 2018/19 will be included in Cwm Taf UHB s IMTP 2018-21 7. Long Term Priorities 2019-2022 Our longer term priorities will be determined through the review of local palliative care services, pathways and processes and by national strategy and clinical drivers. We envisage a continued drive towards: Promoting a culture change in the population s attitudes towards death and dying and increasing acceptance of the value of planning ahead and communicating one s end of life related preferences Achieving a further shift to community based care with more people choosing to and being enabled to receive end of life care at home, including their care home, rather than in hospital Widespread use of Advance Care Planning for people approaching the end of life, and effective systems in place for sharing ACPs Continuous improvement in the quality of end of life care provided in all care settings, supported by education and training Effective and responsive bereavement services to facilitate a healthy grieving process Locally we also look forward to the opening of our new Y Bwthyn Macmillan Specialist Palliative Care Unit at the Royal Glamorgan Hospital in the Spring of 2019 and its establishment at the heart of a modernised palliative care service for Cwm Taf. 8