ANEURIN BEVAN HEALTH BOARD DELIVERING END OF LIFE CARE 2013-2016
1. INTRODUCTION The 5 Year NHS Plan, Together for Health, sets out the programme for health & healthcare in Wales and Together for Health - Delivering End of Life Care forms part of a suite of delivery plans for service areas and should be read alongside other plans, including The Cancer Delivery plan. The End of Life Delivery Plan sets out what this means for the delivery of measurable excellence in end of life care services. 2. BACKGROUND AND CONTEXT 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. 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 sets out clear ways in which the voice of the individual, supported by those closer to them, is heard and respected at the centre of the services they need. It sets out: Delivery aspirations we expect. Specific priorities for 2013-2016. Responsibility to develop and deliver actions. Population outcome indicators and NHS performance measures. The vision: For our population we want: People in Gwent to have a healthy, realistic approach to dying, planning appropriately for the event. People dying in Gwent 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. We will use the following indicators to measure success: % of people dying in place of preference. % of people with palliative needs on a primary care practice Palliative Care Register six months prior to death. % of people who die in usual place of care. % of people in Wales who die intestate. The Drivers: 1
There are clear reasons for end of life care remaining a top priority in Wales. Everybody is affected by the death of a family member or friend who has gone through a final phase of illness. Not only do people need rapid assessment and the best possible treatment, they also need ongoing support and information about choices when treatment may no longer be effective. The NHS must be able to explain clearly the options and their implications to an individual and their family at the end of life. The NHS in Wales must be committed to taking the lead, working with its partners, to delivering this at every stage of the patient journey. What do we want to achieve? The Delivery Plan sets out action to improve outcomes in the following key areas between now 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 and their families; patients entering the terminal phase of their illness and their families feel well cared for. 5. Improving Information. 6. Targeting research. 3. ORGANISATIONAL PROFILE Organisational Overview Aneurin Bevan Health Board delivers services to approximately 639,000 people in Gwent and South Powys. ABHB provides specialist palliative care services from 3 District General Hospitals across Gwent: the Royal Gwent Hospital, Nevill Hall Hospital and Ysbyty Ystrad Fawr. The specialist palliative care team comprises 4 palliative medicine consultants, 3 wtes and a nursing team of a lead nurse, 0.6 wte; 4x band 7 Clinical Nurse Specialists, 3 wtes; 4x band 6 Clinical Nurse Specialists, 3.75 wtes; 2x Health Care Support Workers, 2 wtes. ABUHB also employs 2x Macmillan GP Facilitators, 0.4 wte, to support primary care and community services and 1x Macmillan Palliative Care Pharmacist, 0.6 wte, to provide prescribing support to primary care. 2
Community based specialist palliative care services is provided by Hospice of the Valleys based in Blaenau Gwent and St David s Foundation Hospice Care which covers Caerphilly, Monmouthshire, Newport and Torfaen. Both organisations employ Clinical Nurse Specialists who work with primary care teams and community services, alongside the direct clinical support they provide to patients and their families and carers. Hospice at Home services are provided by both St David s Foundation Hospice Care and Marie Curie Cancer Care. Hospice of the Valleys is supported by a 0.3 wte NHS palliative medicine consultant and St David s Foundation Hospice Care is supported by a 0.6 wte NHS palliative medicine consultant. St Anne s Hospice is the specialist palliative care in-patient unit with 10 beds. It is run by St David s Foundation Hospice Care and supported by a 0.6 wte NHS palliative medicine consultant and 2x SAS doctors, equivalent to 1.0 wte, employed by ABUHB. Overview of Local Health Need and Palliative Challenge Aneurin Bevan Health Board has been working with its third sector specialist palliative care providers over the last 6 months to develop an integrated Gwent Palliative Care Strategy to address the needs of Gwent residents. The current key challenge is the need for all specialist palliative care services to work in an integrated way to meet the needs of patients and their families and carers. The key priorities detailed below represent the work that is already being undertaken in partnership across Gwent and which will ne enhanced as the Gwent Strategy is further developed. 4. DEVELOPMENT OF ANEURIN BEVAN UNIVERSITY HEALTH BOARD END OF LIFE DELIVERY PLAN In response to the Together for Health End of Life Delivery Plan (2013), Health Boards are required, together with their partners, to produce and publish a detailed local service delivery plan to identify, monitor and evaluate action needed within timescales. The LHB Executive Leads for End of Life Care will need to report progress formally to their Boards against milestones in these delivery plans and publish these reports on their websites quarterly. A review of current palliative care services against the expectations set out for 2016 has been undertaken and has been used to inform this Local Delivery Plan. In addition to this the palliative lead clinicians have been tasked with assessing what we are currently doing, to look at what we can do differently or collectively and to set priorities for 2013/14 within this Plan. 3
5. SUMMARY OF THE PLAN - THE PRIORITIES FOR 2013-14 Following the completion of the above review, the key findings have been incorporated into our local delivery plan for palliative care. This delivery plan includes actions against each of the 2016 milestones within the Welsh Governments End of Life Plan (2013). Supporting living and dying well The priorities for 2013 16 are: Continue to support the increased usage of advance care planning across Gwent including web based access and incorporation into GP IT systems. All Specialist Palliative Care Teams will continue to provide on-going education and training to include advanced communication skills and the delivery of good end of life care to primary care teams. Specialist Palliative Care Teams will work in partnership to target specific professional groups to deliver tailored training including community pharmacists and nursing home staff. Continue to embed the usage of the ABHB multi-agency paediatric Advance and Emergency Care Plan. Support and empower the Macmillan Palliative Care Pharmacist to continue to develop initiatives and work streams to improve medicine management at the end of life. To promote patient choice and facilitate preferred place of care /death. Specialist Palliative Care Teams to work together to support the delivery of training and support for carers. Detecting and identifying patients early The priorities for 2013 16 are: Continue to promote the QP pathway for EOLC with GPs. Design templates to support GP surgeries to accurately record and structure their palliative care meetings. Continue to support shared decision making in paediatrics via Advance Care Plans. Macmillan GP Facilitators and Specialist Palliative Care Teams continue to promote MDT meetings. Repeat survey of 2012 by Macmillan GP Facilitators to establish if there is improved frequency and holding of MDT meetings. Keep updated GP web page for ABHB on palliative care incorporating contact details for all Specialist Palliative Care teams. 4
Maintain Specialist Palliative care web page on intranet and internet incorporating details for all Specialist Palliative Care Teams. Develop and disseminate paediatric specialist palliative care information leaflet. Delivering fast, effective care The priorities for 2013 16 are: Develop and implement a robust Quality and Patient Safety framework for Gwent which is in line with service national guidelines as well as generic guidelines. Promote and facilitate the use of appropriate documentation at end of life according to patients care priorities such as the Integrated Care Priorities documentation across all sectors. Continue to work closely with Continuing Healthcare teams in both adults and paediatric services. Roll out of electronic access to special notes. Work with NWIS to support read only access to CaNISC available to non specialist palliative care providers. Improved transitional planning arrangements between paediatric and adult specialist palliative care services. One agreed Advance Care Planning tool for Gwent. Develop and implement the Gwent Palliative Care Strategy in partnership with all palliative care providers in Gwent. All strategic developments in Gwent discussed and agreed at Gwent Palliative Care Strategic Partnership Group and shared with Palliative Care Implementation Board. Work in partnership with Specialist Palliative Care providers to enable feedback from individuals and families on the patient pathway. Reducing the distress of terminal illness for patients and their families The priorities for 2013 16 are: Via Gwent Palliative Care Strategic Partnership Group ensure 24/7 services continue to be provided and enhanced. ABUHB to commission specialist palliative care services based on agreed service requirements identified in Gwent Palliative Care Strategy. Work with NWIS to support read only access to CaNISC available to non specialist palliative care providers. Develop and support a patient and families reference group for Gwent. 5
Improving Information The priorities for 2013 16 are: Share and annually review all information leaflets provided by Specialist Palliative Care Teams. Publish transparent information on the performance of NHS and voluntary sector providers including safety, effectiveness and patients views. Report performance to ABHB Board on an annual basis against WG quality indicators. Publish information about the quality and effectiveness of end of life care services in Gwent on an annual basis on ABHB website and partner organisations websites. Targeting Research The priorities for 2013 16 are: Facilitate recruitment to National Institute of Social and Healthcare Research (NISCHR) portfolio studies. Develop infrastructure support high quality research across all organisations. 6. PERFORMANCE MEASURES/MANAGEMENT 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 2014. 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 2014. 6
6. ACTION PLAN The following pages (7 to 18) provide an assessment and actions necessary to support delivery of the Aneurin Bevan Health Board End of Life Care Delivery Plan up to 2016:- 7
Supporting living and dying well Objectives Actions Expected Risks to delivery Timescales Lead outcome To promote patient choices to allow living and dying well through advance care planning (ACP). Increased use of advance care planning documentation which is shared across sectors. Different advance care planning documentation used between organisations. On going. 2016. To improve knowledge and skills in symptom control and communication among generic staff. Continue to support the increased usage of advance care planning across Gwent including web based access and incorporation into GP IT systems. 1. All Specialist Palliative Care Teams will continue to provide on-going education and training to include advanced communication skills and the delivery of good An agreed ACP tool used across Gwent. Skills and knowledge to include symptom control and communication skills among generic staff will improve and good end of life care will be facilitated. Inconsistent buy in from all stakeholders. Multiple IT systems hamper easy access to ACP details. Time resource from clinical service commitment. Clarification of roles of each specialist provider. Lack of common Phased approach: 2013/14 focus on nursing homes and community pharmacists. GP Facilitators / Primary Care lead. Medical / Nursing clinical leads. 8
end of life care. 2. Support and empower the Macmillan Palliative Care Pharmacist to continue to develop initiatives and work streams to improve medicine management at the end of life. education provision between all specialist palliative care providers to Ensure consistency of training. Macmillan pharmacy fixed term without confirmation of ongoing funding. Training resources and equity of access to specialist palliative care. 2013 16 The development of a shared education strategy. Macmillan pharmacist. 3.Specialist Palliative Care Teams will work in partnership to target specific professional Increased support will be given to nursing homes to facilitate good end of life care to Consistency of training across Gwent. GP Facilitators / Clinical leads. 9
groups to deliver tailored training including community pharmacists and nursing home staff. avoid inappropriate admissions. To promote patient choice and facilitate preferred place of care /death. 1.To continue to initiate the Fast track process to facilitate preferred place of care. 2. Specialist Palliative Care Teams to work together to support the delivery of training and support for carers. Supporting living and dying well Carers will feel 1. Financial supported and implications to the numbers of sustain patients being increasing cared for and demand on fast dying in their track. preferred place of care will rise. 2. Resources available from providers. 3. Agreement between organisations on shared training package. Fast track: ongoing. 2014/15 for carer training. Clinical leads. 10
Continue to embed the usage of the ABHB multi-agency paediatric Advance and Emergency Care Plan. Ongoing. Medical /nursing leads (paediatric palliative care). To detect and identify patients with palliative care needs so timely intervention can be offered. 1. Continue to promote the QP pathway for EOLC with GPs. 2. Designed template to support GP surgeries to accurately record and structure their palliative care meetings. 3. Continue to support shared decision making in paediatrics via Detecting and identifying patients early Patients on QP ELOC Ongoing. palliative care pathway no registers will longer increase which mandatory will inform MDT discussion and Time resource for improve patient GP Macmillan journey / facilitators. experience. Improve patient journey and facilitate transition to Potentially no further Macmillan funding for GP facilitators post 2015. Incompatibility of I.T systems. Repeat GP survey 2014/15. Macmillan GP facilitators / Primary Care leads / Paediatric palliative care leads. 11
Advance Care Plans. adult services 4. Macmillan GP Facilitators and Specialist Palliative Care Teams continue to promote MDT meetings. 5. Repeat survey by Macmillan GP Facilitators. 6. Keep updated GP web page for ABHB on palliative care incorporating contact details for all Specialist Palliative Care teams. An improvement in frequency and holding of MDT meetings. 7. Maintain Specialist Palliative care 12
web page on intranet and internet incorporating details for all Specialist Palliative Care Teams. To deliver fast and effective end of life care. 1. Develop and implement the Gwent Palliative Care Strategy in partnership between the statutory and voluntary organisations. Delivering fast, effective care A shared vision Cohesive working to provide a across all seamless specialist approach to care palliative care which all providers in organisations Gwent. have participated. March 2014. Directorate manager / clinical leads. Strategic Leads attending PCIG. 2. All strategic developments in Gwent agreed at Gwent Palliative Care Strategic Partnership Group and shared with Strategic developments in Gwent will be aligned with any All Wales initiatives. 13
Palliative Care Implementation Board. To demonstrate quality of service provision. 1. Develop and implement a robust Quality and Patient Safety framework for Gwent which is in line with service national guidelines as well as generic guidelines. 2.Continue to work closely with Continuing Healthcare teams in both adults and paediatric services Evidence will be provided through measurable outcomes to demonstrate the quality of the service. Initiatives will develop such as fast track discharges to provide a quality service. Sign up from all Gwent Specialist palliative care providers to a shared quality and patient safety framework. Establishment of measurable outcomes. Metric to assess delivery achieved. Clarification of responsibilities for delivery as many outcomes are generic not 2013 /2014. Directorate manager / Clinical Leads / performance manager 14
specialist palliative care. To promote the use of the All Wales Care Priorities document across all sectors. Education and training sessions to be carried out on a rolling programme. Increase in variance returns. Resource limitations. Uncertain future / change of document. Return in variance sheets. Ongoing. Clinical leads. Implications following Neuberger review. To Facilitate feedback from patients and their families. 1. Work in partnership with Specialist Palliative Care providers to enable feedback from individuals and families on the patient pathway via data from IWGC, Service will be evaluated and evolve to meet the needs of patients and their families. Ability to identify meaningful feedback from across the patient pathway, rather than looking at individual organisations in order to make meaningfuk 2014/2015. Clinical leads. 15
dying well matters and patient stories. 2. Develop and support a patient and families reference group for Gwent. change to the patient experience. Dissemination of IWGC through all services. Reducing the distress of terminal illness for patients and their families To reduce the distress for patients and their families. Access to specialist palliative care 24/7. Need to change delivery of services within existing financial 2014/2015. Clinical leads. envelope. Via Gwent Palliative Care Strategic Partnership Group ensure 24/7 services continue to be provided and enhanced. Adherence to ACP and dissemination of decisions to all stakeholders e.g WASP and OOH. Ongoing funding 16
ABHB to commission specialist palliative care services based on agreed service requirements identified in Gwent Palliative Care Strategy. Services commissioned will reflect identified need. required to support this. Any threat to funding would threaten service. Directorate manager. Improving information Work with NWIS to support read only access to CaNISC available to non specialist palliative care providers. Improve information to non specialist providers to facilitate seamless care especially for OOH services. To improve accessibility for 1. Share and annually review Information regarding the Lack of collation of all specialist Annual. Directorate manager/ 17
the organisation and the public to information. all information leaflets provided by Specialist Palliative Care Teams. 2. Publish transparent information on the performance of NHS and voluntary sector providers including safety, effectiveness and patients views. service will be transparent and easily accessible for the organisation and the public. palliative care providers. Information should provide a Gwent view. Resources. performance leads/ clinical leads. 3. Report performance to ABHB Board on an annual basis against WG quality indicators. Targeting research 4. Publish information 18
about the quality and effectiveness of end of life care services in Gwent on an annual basis on ABHB website and partner organisations websites. To facilitate recruitment to National Institute of Social and Healthcare Research (NISCHR) portfolio studies. 1. Monthly dissemination of current trials open to recruitment and recruitment figures. Recruitment of patients to at least one portfolio badged trial. Clinic Space Availability. Trial nurse availability. Competing priorities with clinical care. Ongoing. Medical R and D lead. 2. Facilitate access to NISCHR trial nurse support in clinic. 19
Develop an infrastructure to support high quality research across all organisations. 1. Establish pan Gwent Palliative Care Research network involving all stakeholder organisations. 2. Establish research governance and sponsorship processes when conducting research within voluntary partnership organisations. 3. Support research based Masters courses. Quarterly meeting attended by all stakeholders. Each organisation to have documented process for recruiting patients to NISCHR trials. Master s course applied for should have research component to it. Establishing robust indemnity processes for voluntary sector. Resources for funding Masters course. Ongoing. Medical R and D lead. 20