BETSI CADWALADR UNIVERSITY HEALTH BOARD END OF LIFE DELIVERY PLAN CONTENTS

Transcription

1 BETSI CADWALADR UNIVERSITY HEALTH BOARD END OF LIFE DELIVERY PLAN CONTENTS 1. INTRODUCTION 2. ORGANISATIONAL PROFILE 3. OVERVIEW OF LOCAL HEALTH NEED 4. PROGRESS TO DATE 5. PRIORITES GOING FORWARD 6. APPENDICES a) BCUHB Local End of Life Delivery Plan B) BCUHB End of Life Care Profile 1

2 INTRODUCTION The Welsh Government s Together for Health End of Life Delivery Plan was published in 2013 and provides a framework for action by Local Health Boards and NHS Trusts working together with their partners. The document sets out the Welsh Government s expectations of the NHS in Wales in delivering high quality end of life care for those patients and their families, regardless of diagnosis, circumstances or place of residence in Wales.. In doing so it recognised that although there are core principles for excellence in end of life care, the mechanisms by which this is achieved may need to vary in different settings. This reflects the diversity of organisations involved in end of life across health and social care. There are clear drivers for ensuring palliative and end of life care is a priority for the NHS in Wales. Everybody is affected by the death of a family member or someone close who has gone through a final phase of illness. There needs to be access to rapid assessment and the best possible treatment, in addition there needs to be ongoing support and information about choices when treatment ceases to be effective. For the purpose of this report palliative care is defined as the care of patients with life limiting progressive diseases. These diseases will include cancer but also those non-cancer diagnoses including diseases such as heart failure, chronic obstructive airways disease, motor neurone disease and chronic kidney disease. The plan sets out clear ways in which the voice of the individual, supported by those close to them, is heard and respected by the services they need. At its centre is a clear vision of what we want for our population here in Wales and specifically North Wales. We want the people of North Wales: To have a healthy, realistic approach to dying, planning appropriately for the event To have access to high quality care wherever they live and die whatever their underlying disease or disability, devoid of any prejudice in relation to their personal situation 2

3 In order to achieve this Betsi Cadwaladr University Health Board published its End of Life Care Delivery Plan, written in conjunction with key partners, in It identified actions in the following six key areas from Together for Health End of Life Delivery Plan 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 and their families; patients entering the terminal phase of their illness and their families feel well cared for 5. Improving information ensuring patients and their families have access to information, appropriate to their needs, about treatment and services available to them. Also that mechanisms are in place to evaluate and monitor the quality of those services 6. Targeting research so services are underpinned by robust evidence so we can be certain that we are delivering the best end of life care for patients and their families. In North Wales significant progress has been made across all areas. The close working relationships between primary and community services, Local Authorities and third sector partners in North Wales, these include the Hospices, Macmillan and Marie Curie have enabled services to be modernised thus ensuring that they remain fit for purpose recognising the changing demographics within North Wales. The three key areas which under pin all the themes referred to above for the Health Board are around: 1. Education to ensure that all our staff are equipped with the necessary skills in general palliative care and have access to those with demonstrable higher skills and competencies where necessary to deliver this care 2. Metrics so we have the systems in place to measure the quality of care that we deliver and that we can evaluate the impact of any change in services in addition to those national indicators of Welsh Government which are 3

4 % of people dying in place of preference % of people with palliative needs on a primary care practice Register six months prior to death % of people who die in usual place of care % of people in Wales who die intestate 3. Advance Care Plans (ACPs) that we have the mechanisms in place to communicate effectively with patients and their families so as to understand their wishes and preferences at the end of life so as to better co-ordinate their care ORGANISATIONAL PROFILE Betsi Cadwaladr University Health Board (BCUHB) is the largest health organisation in Wales, providing a full range of primary, community, mental health and acute hospital services for a population of around 676,000 people across the six counties of North Wales (Anglesey, Gwynedd, Conwy, Denbighshire, Flintshire and Wrexham) as well as some parts of mid Wales, Cheshire and Shropshire. The Health Board employs around 16,100 staff and has a budget of around 1.2 billion. It is responsible for the operation of three district general hospitals (Ysbyty Gwynedd in Bangor, Ysbyty Glan Clwyd in Bodelwyddan and Wrexham Maelor Hospital) as well as 18 other acute and community hospitals, and a network of over 90 health centres, clinics, community health team bases and mental health units. We also coordinate the work of 114 GP practices and NHS services provided by North Wales dentists, opticians and pharmacies. A range of services are tailored to the needs of the patient regardless of their primary diagnosis. Seven day specialist palliative care nursing being available in all settings and 24hr specialist medical advice across North Wales. Palliative care services are closely integrated with the voluntary sector and as a result the service is delivered in close and mutual cooperation with the hospices services. There are four specialist palliative care inpatient units, Nightingale House Hospice (Wrexham), St Kentigern Hospice (St Asaph), St David s Hospice (Llandudno) and Alaw ward (Ysbyty Gwynedd, Bangor). These 4

5 specialist palliative care inpatient units which offer a range of specialist inpatient and day care services are complimented by the two Hospice at home services, one voluntary (Gwynedd and Anglesey Hospice at Home ) covering the two counties and the other statutory, based in Wrexham covering the counties of Wrexham and Flintshire. There are also palliative care beds in Eryri Hospital in Caernarfon. Additional palliative care community care is delivered by Marie Curie Nursing care which complements district nursing services and a range of community services such as Enhanced Care and End of Life Teams in caring for patients in their own homes. The District Nursing Service across North Wales will provide high quality patient focused/centred care in a variety of settings by utilizing a holistic approach to care within a community that maximises the health potential of not only the individual client but also addresses the wider health and social care needs of various client groups and their carers The District Nursing Service within BCUHB will be the first point of contact for people to access nursing services. They will provide care through appropriately skilled and qualified nursing workforce, which delivers an equitable and accessible range of services The District Nursing service will work in partnership with secondary care, palliative care teams and the third sector to offer the following services: Acting as key worker to coordinate the patients potential multi agency package of care Pain management Care assessment and planning to ensure the comfort of the patient Liaison with all other relevant agencies Safe and effective nursing care Input into the principles of the gold Standards framework with GP practices Advice and support for the patient/family and carers Terminal care management, using the all Wales integrated priorities pathway for the last days of life Assessing the patient s needs and ensuring all care is provided by utilizing other agencies such as Marie Curie etc. 5

6 In addition the Primary Care Specialist Medicine Clinical Programme Group has recently received funding from Macmillan for a community cancer project lead. The purpose of this role is to lead and operationally manage the 121 project which includes contribution to the Person Centred Care Project influencing the redesign of the cancer care pathway, redesigning the current and future workforce and how it supports the cancer care pathway, and developing new models of aftercare which are seen as some of the solutions across primary and secondary care. The aim is to promote a cultural shift in the approach to care and support for people affected by cancer recognising a greater focus on recovery, health and wellbeing focused from diagnosis onwards, but especially at the end of cancer treatment is required. In Children and Young People, palliative care is provided by the two children s hospices in North Wales, Ty Gobaith and Hope House. They provide respite care, end of life care and bereavement and counselling services for children and young adults up to the age of twenty-four. There are three oncology specialist nurses who look after children with malignant conditions during active treatment, end of life and bereavement support. In children with other life limiting conditions palliative care is provided by paediatric community nurses (Diana nurses). The Welsh Paediatric Specialist palliative care service is based in South Wales and can be accessed during working hours. There are two paediatricians who have developed special interest in palliative care and have postgraduate qualifications in this area with a third colleague in the process of developing this following the retirement of the previous post holder. They act as a specialist resource where necessary giving advice and support to their colleagues locally. Currently there is a review under way of paediatric palliative care services in North Wales. OVERVIEW OF LOCAL HEALTH NEED North Wales covers approximately 2,500 square miles and is made of six counties; Anglesey, Gwynedd, Conwy, Denbighshire, Flintshire and Wrexham. The population of North Wales is currently 687,800 but is predicted to grow to 731,500 by In addition to the registered population there is also a significant transient population in the caravan parks. The area has an ageing population with a higher proportion of people aged 55 years and over and a lower proportion aged between 15 and 34 years, compared to Wales as a whole. With increasing age comes an increasing number of people living not only with cancer but also multiple chronic diseases which will significantly impact on both them and their families. 6

7 20.2% of the resident population is aged 65 and over (compared to the Welsh average of 18.5%) and this is predicted to grow by 60% between 2008 and One fifth of the people who live within the most deprived areas in Wales are located in North Wales. Despite this, the health of the population in North Wales is generally better than, or similar to, the Wales average particularly if one looks at mortality from cancer, respiratory disease and cardiovascular disease (Table1). Table 1 Mortality Data for North Wales Deaths (LHB residents) Indicator LHB Number LHB Indicator Value Death rates per 100,00 population Death rates per 100,000 from cancer Death rates per 100,00 from respiratory disease Death rates per 100,00 from cardiovascular disease Wales Average Wales Range 7, , , ,

8 There is widening inequities in healthy life expectancy between the most and least deprived and there is no room for complacency. BCUHB is committed to managing this evolving palliative care challenge focusing very much on providing this care in the place of the patients choice, where it is safe and appropriate, working closely with all stakeholders to ensure that this is done in an equitable way. PROGRESS TO DATE In response to the Together for Health End of Life Delivery Plan (2013), Betsi Cadwaladr University Health Boards (BCUHB), together with their partners, produced and published a detailed local service delivery plan to identify, monitor and evaluate action needed within timescales. This is the Health Board s report on progress against the six priority areas defined by Welsh government (Appendix 1; detailed local delivery plan). In this report we are able to demonstrate what we are achieving in North Wales, specifically around: Delivering End of Life Care nearer to the usual place of residence Identifying patients in a timely way Access to Specialist services Recognising we wish to further refine the metrics around these areas going forward. Delivering End of Life Care nearer to the usual place of residence Many patients wish to be cared for in a place where they feel secure with easy access for their loved ones. For some this is at their home (whether this is their own house or a care home) or in an environment near their own home such as a community hospital or hospice. There is also a minority who wish or need to die in an acute hospital (Higginson IL, Priorities and Preferences for end of 8

9 life care in England, Wales and Scotland. Cicely Sanders Foundation, Scottish Partnership for and the National Council for Hospice and Specialist Services 2003). For those patients under the care of Specialist Teams (SPCTs) work is currently being undertaken to identify the numbers of patients who do die in their preferred place of death. This work is being undertaken as the current system of data collection within CaNISC does not have the capability to collect this important information. Identifying patients preferences is core to enabling this to be achieved and the role for ACPs to better record this and allow it to be shared increases the likelihood of this being attained. As a consequence an education package has been developed and is being rolled out in a phased approach to ensure Health Care Professional have the competencies and confidence to support patients with ACPs Current data regarding place of death demonstrates that the percentage of patients dying in acute and community hospitals in North Wales is slightly below that of the national average, with near average or above average in other community settings (Table 2) Table 2 Place of death in North Wales (ONS) Place of death LHB Number LHB Indicator value (%) Wales Average (%) Wales Range Hospital 3,679 54% 56.9% % Own Home 1, % 22.4% % SPC beds % 3.2% % Care home 1,227 18% 15.9% % 9

10 Graph 1 Table of trends in place of death The above demonstrates that end of life care in North Wales is beginning to shift closer to home. However it is important not to be complacent particularly in the context of an aging population and the lack of family support in some areas particularly where individuals have retired into North Wales moving away from family networks. In order to better understand the wishes and priorities for patients and families at the end of life ACPs have been identified as a key strategy to support this going forward. Identifying patients in a timely way 10

11 Identifying patients with palliative care and end of life needs in a timely way is essential to allow appropriate assessment of needs and access of support services. Primary care services provide a critical role in identifying this patient group. The general practice palliative care register identifies patients within primary care and acts as a trigger for discussing the patient and their needs at the appropriate MDT meeting. In BCUHB there is close working between the SPCTs, Macmillan End of Life Facilitators and Primary care identifying this patient group (Table 4). Table 3 Percentage of patients on GP lists in North Wales on Registers. GP patients on a palliative care register Wales average (2014) Wales range % 0.25% 0.25% 0.23% % Clearly good work is occurring here in North Wales but we need to continue focusing on this and in particular work hard to better identify patients with non-cancer diagnoses who would be appropriate for inclusion on a GP palliative care register using mechanisms such as needs based coding which a piece of work currently being undertaken (Appendix 1). Access to Specialist services Many patients are well supported both within primary and secondary care but the need for additional support for patients with more complex physical, psychological, social and spiritual symptoms may require a further referral to specialist services. Timely access to such services is important for both the patient and their loved ones. These services work in close collaboration with primary and secondary care services and can involve access to specialist palliative care inpatient and day care services which are provided by a range of statutory and voluntary providers. It is also important that the management of patients with complex palliative care needs with non-cancer diagnoses is recognised. In North Wales over 20% of the clinical workload of Specialist teams is for those patients with non-cancer diagnoses (Wales average 19.5%, Welsh range %). 11

12 From and there has been a roll out of CaNISC as the electronic record of choice. Geographical constraints restricting access to computers to input data in a timely manner following clinical review has lead to delays. As a result North Wales submitted a successful bid to WG for funding for laptops and remote access technology to better allow staff to input data in real time. Despite the technological difficulties due to our geography, data from CaNISC to date suggests that a high proportion of urgent referrals (63.5% of patients referred as urgent are seen with 2 days (Welsh range %)). Clearly there is still room for improvement but it is envisioned improved data systems and the federated approach to Specialist issues will support this. PRIORITES GOING FORWARD Clearly whist much good work is occurring here in North Wales it is important to look forward to where there is need for a further focus. As a result the Health Board has decided to concentrate on the three key projects described above to better enable us to deliver the six areas defined by Welsh Government: 1. Education - a comprehensive education package has been developed to address those education needs for both Generalists and insure higher competences for the specialists. In particular education for Nursing Homes is a particular priority supported by the Macmillan End of Life Facilitator Team through the six steps programme. 2. Metrics the use of CaNISC as the main system for the collection of Specialist activity data, is important. This will be further enhanced by the roll out of the successful WG IT bid. However there is also the recognition that there is the need for other measures to allow the HB to look at other elements of palliative and end of life care delivered to ensure the best service for the population in North Wales in the most effective way. 3. Advance Care Plans building on the work to date we plan to work with Macmillan to look to develop a Macmillan Advance Care Plan Project Manager who will work with the existing stakeholders to drive forward ACPs in all settings. 12

13 Summary Palliative and End of Life Care for the population of North Wales has been identified as highly important area for North Wales spanning as it does all services across health and social care. As a result the HB three year plan reflects those priorities from the End of Life Delivery Plan recognising whilst excellent progress has been made to date that this is on an ongoing piece of work for the HB to and beyond

14 APPENDICIES 1. Appendix 1 BCUH End of Life local service delivery plan - This delivery plan includes actions against each of the 2016 milestones within the Welsh Governments End of Life Plan (2013) 2. Appendix 2 End of Life Care Profile ( ) 14

15 Appendix 1 BCUH End of Life local service delivery plan PERFORMANCE MEASURES/MANAGEMENT FOR THE DELIVERY PLAN The Welsh Government s Delivery Plan for End of Life (2013) contained an outline description of the national metrics that LHBs and other organisations will publish: Outcome indicators which will demonstrate success in delivering positive changes in outcome for the population of Wales. National performance measures which will quantify an organisation s progress with implementing key areas of the delivery plan. Progress with these outcome indicators will form the basis of each LHB s annual report on end of life care. They will be calculated on behalf of the NHS annually at both a national and LHB population level. LHBs will produce their first annual report in March LHBs will also report progress against the local delivery plan milestones to their Boards at least annually and to the public via their websites. It is expected that Local Delivery Plan and their milestones are reviewed and are updated annually from March

16 Supporting living and dying well Objectives Actions Expected outcome Risks to delivery Timescales Lead(s) To enable patients and families to make and share decisions regarding End of Life (EoL) Roll out Advance Care Plans in a planned phased approach in North Wales, under pinned by education Improved communication between patients, carers and health care professionals (HCPs) regarding choices at the EoL. Engagement from stakeholders (Patients / Carers / HCPs) Knowledge base to enable staff to have these conversations Preferred place of care/death achieved A reduction in admissions to acute hospitals at the end of life. Clinical Director for Clinical Director for Medicine Chief of Staff Cancer, and Haematology GP Locality Leads Clinical Director for Improvement Project Manager for ACP Implementation of Treatment Escalation Plans in a planned phased approach More appropriate care for patients delivered closer to their usual residence. A reduction in admissions to acute hospitals at the end of life. Resources to allow interventions such as parental fluids and antibiotics closer to their usual residence Clinical Director for Clinical Director for Medicine Chief of Staff Cancer, and Haematology GP Locality Leads 16

17 Improved knowledge and skills regarding Palliative and EoL Care Primary Care Develop OOH education pack GP VTS programme Generalists Elearning package EoL training Specialists Specialist programme Chronic Disease tool kits for the last year of life Dementia (in place) COPD (being developed) HF (being developed) Chronic Kidney disease Nursing Homes (NH) Six steps education programme Support GPs through individual practice and cluster plans to identify and address any issues relating to EoL care Increased skills of primary care staff in palliative care and EoL care Better palliative and EoL care Highly skilled specialist team Better management of symptoms and end of life care for patients with non-cancer diagnoses. Reduction in improved palliative and EoL care for patients in Improved palliative and EoL care in primary care Release of staff to undertake education Release of staff to undertake education Release of staff to undertake education Capacity of staff to develop tool kits Capacity of staff given the HB has the largest number NHs in Wales Capacity of GPs and resource access GP OOH lead VTS Trainers All CPGs Education Group Education Group Respiratory Team Heart Failure Team Renal Team Macmillan End of Life Facilitator Team Locality Leads Deputy Director Primary Care Scope the formal and Better awareness of Capacity to undertake CEO St Kentigern 17

18 informal education programmes for families / carers of palliative care patients Review of Paediatric Services including transition education available Improved care for palliative care children and better transition to adult services Adequate resources and skills to enable delivery Hospice Paediatric Palliative Care Lead CD for Paediatrics St David s Hospice Detecting and Identifying patients early Objectives Actions Expected outcome Risks to delivery Timescales Lead(s) Ensuring that people with palliative care needs are identified early to enable the best care to be planned Support GPs and primary care in the use of registers Timely and regular discussion of this patient group will improve patient and carer experience Sufficiently regular meetings Identification of patients with noncancer diagnoses for Macmillan GP facilitators and EoL facilitators Deputy Director of Primary Care Develop needs based coding as a strategy to promote identification of palliative care patients Development of a paediatric palliative care North Wales Directory Better identification of patients with palliative and EoL needs Clarity for generalists requiring paediatric palliative care services inclusion Capacity of staff Palliative Medicine Consultant (West) Macmillan Lead for EoL Care Capacity of staff 2015 Consultant Paediatrician (West) Delivering fast, effective care Objectives Actions Expected outcome Risks to delivery Timescales Lead(s) Access to 24/7 Deliver services in 7/7 palliative care Non anticipated Clinical Director 18

19 palliative care line with National guidelines and performance indicators Strong and effective partnerships with voluntary inpatient and day care services as well as statutory provision Obtained funding for remote IT access to CaNISC for SPC Review the service level agreement commissioned from Marie Curie Care in accordance with Standard financial instructions and European law to ensure it is fit for purpose given the CNS, supported by specialist medical advice 24/7 Voluntary (Nightingale House, St Kentigern, St David Hospice s and Gwynedd and Angelesey Hospice at Home for Adults, and Ty Gobaith Hospice for children) and statutory specialist palliative care inpatient beds (Bangor) Allow timely inputting of clinical data from remote areas to better support CaNISC as a clinical record to improve patient care Enable more patients to be cared for and die at home where this is their wish ACoS Nursing CPCH Financial pressures Clinical Director Appropriate software and IT support Resource and funding limitations Associate Chief of Staff (Operations) 2015 Specialist palliative Care IT group HB IT department 2015 Partnership Development and Improvement Manager QA Lead for CHC ACOS nursing CPCCH 19

20 Support the use of the Last Days of Life Integrated Care Priorities To demonstrate the delivery of high fast and effective care changing demographic of the population of North Wales Support education on end of life symptom control and strategies to promote the delivery of quality EoL care Work with WG and HB IT to develop further performance indicators to demonstrate this Better experience of EoL care for patient and carers Allow the HB to be assurance that this is delivered and identify any areas requiring additional work Identification of patients approaching end of life especially in patients with noncancer diagnoses Variation in the quality of data Clinical Director for ICP Consultant Lead for Wales and project manager HB Head of Information Clinical Director for Participate in local, regional and national audits on palliative care Establish mechanisms such as I Want Great Care, patient stories, etc to obtain feed back from patients and carers Review of any HB concerns and Provide assurance to HB and third sector palliative care providers that services are fit for purpose and identify any areas for improvement Identify areas of good practice to allow dissemination and areas for improvement Identify areas of good practice and areas for Welsh Government Capacity of staff North Wales Clinical Audit Group Ability to speak directly to users to drill down with IWGC. ACoS Nursing CPCH Repeated concern ACos Nursing Clinical Director for 20

21 complaints regarding improvement EoL and palliative care Reducing the distress of terminal illness for patients and their families Objectives Actions Expected outcome Risks to delivery Timescales Lead(s) To reduce distress for patients and their carers Roll out of ACPs to better understand and therefore support patients and their carers at the EoL Work with Macmillan to try and identify funding for ACP project manager A reduction in inappropriate admissions and improved patient choice at the EoL Funding of an ACP Project Manager. Engagement of staff and patients. Staff training and capacity Clinical Director for CoS CPCH Clinical Director for Service Improvement Clinical Director for Medicine (East) Obtain patient and carer feedback regarding EoL care Develop robust fast track mechanisms to allow, where they chose, patients to be rapidly discharged home or nearer to home to die To develop admission to hospices through nurse led protocols Promote through patient surveys such as IWGC, hospital and Hospice Reduction in patients who chose to die at home or nearer to home dying in acute hospitals To reduce deaths in acute hospital where this is appropriate and wanted Better understanding of patient and carer experience of EoL care to identify areas Appropriate pathways. Capacity of services in community and funding Capacity of staff to develop pathway 2015 Consultant Palliative Medicine (Central) Secondary care Director Director of Nursing and Patient Services, Nightingale House Hospice None anticipated Specialist palliative Care Teams 21

22 questionnaires evidence of care experienced at EoL of good practice to enable dissemination and areas for improvement Improving Information Objectives Actions Expected outcome Risks to delivery Timescales Lead(s) Improve accessibility of information for patients and carers Obtain patient and carer feedback regarding EoL care Improve accessibility of information regarding palliative and end of life care for HCP Ensure that metrics for measuring EoL and are meaningful and consistent Update of Palliative Care Services Directory Promote through patient surveys such as IWGC, hospital and Hospice questionnaires evidence of care experienced at EoL Development of palliative care desk top icon as resource pack and with additional links to web based resources and advice Review the current metrics and with IT identify additional metrics Improved understanding by patients and carers of services available and how to access them Better understanding of patient and carer experience of EoL care to identify areas of good practice to enable dissemination and areas for improvement Increased confidence to deliver EoL and palliative care by HCP Better able ensure quality EoL and is delivered and changes in services improve patient care Services changing between iterations Cancer information office Matron None anticipated Specialist palliative Care Teams Capacity of staff to keep up-to-date Capacity of IT Ability of different IT systems to talk to each other Palliative Medicine Consultant (Central) Head of Information Clinical Director for 22

23 Targeting Research Objectives Actions Expected outcome Risks to delivery Timescales Lead(s) To participate in appropriate National Institute of Social and Healthcare Research (NISCHR) studies Identify and participate in appropriate NISCHR studies Improve the evidence base for palliative and EoL care and improve patient outcomes Staff capacity Clinical Director for Senior Lecturer in Palliative Medicine Working with the Department of Primary Care, Bangor University, Welsh Deanery and other academic centres to develop research work streams for and EoL. Through work of NW research group to Welsh Clinical Leadership Training fellow post Mechanism for ensuring the clinical practice reflects evidence base To work towards hospices being research ready Improve quality of advance care planning in North Wales Research Nurse Staff capacity Senior Lecturer in Palliative Medicine Appointing a Clinical Fellow North Wales Research Group Clinical Director in Clinical Director for Service Improvement Senior Lecturer in Palliative Medicine 23

24 Appendix 2 Betsi Cadwaladr Care Profile April C:\Documents and Settings\ca076664\My 24