TOGETHER FOR HEALTH DELIVERING END OF LIFE CARE PLAN A Delivery Plan up to 2016 for NHS Wales and its Partners

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1 AGENDA ITEM th November 2013 TOGETHER FOR HEALTH DELIVERING END OF LIFE CARE PLAN A Delivery Plan up to 2016 for NHS Wales and its Partners Executive Lead: Director of Therapies and Health Science Author: Dr Melanie Jefferson (Consultant Palliative Care) / Mel Lewis (Lead Nurse Palliative Care) Contact Details for further information: fiona.jenkins3@wales.nhs.uk Tel: SITUATION The Together for Health Delivering End of Life Care, a Delivery Plan up to 2016 for NHS Wales and its Partners 2013 requires all Health Boards to develop and implement a local delivery plan. The plan must ensure services are in line to make significant and systematic progress by 2016 in delivering high quality end of life care (EOL) services. This should identify, monitor and evaluate action needed by whom and by when. Some of the key outcome indicators will be: % of people who die in usual place of care % of people who die in preferred place of care % of people who die with the integrated care priorities in place Reduction in emergency admissions for palliative care BACKGROUND The Delivery Plan for end of life care (2013) sets out the Welsh Government s expectations for NHS Wales working with its partners, including the hospice and social care sector to reduce inequalities in end of life care up to Dying is a social matter; how we care for people who are dying reflects on how we are as a society. Preparing and planning for the end of life with the involvement of families, carers and professionals is essential to the delivery of high quality care. The Welsh Government Delivery Plan sets out the following six key themes: Supporting living and dying well Detecting and identifying patients early Delivering fast effective care Reducing the distress of terminal illness for the patient and their family Improving information Targeting research Each of the themes has associated delivery aspirations, specific priorities and performance measures to be addressed by Local Health Boards. End of Life Plan Page 1 of 4 UHB Board Meeting 5 November 2013

2 Palliative Care services provided within Cardiff and the Vale of Glamorgan are comprised of statutory and third sector provision. The two Third Sector providers, Marie Curie Cancer Care and George Thomas Hospice Care are commissioned to provide community and hospice inpatient provision; the hospital inpatient areas are supported by a consultant led specialist palliative care team. Clinical leads, commissioners and managers have been working together with specialist and generic services and have already made progress on some of the key delivery plan themes. Progress has been made in the provision of 7 day Clinical Nurse Specialist services, out of hours drug access, the use of the integrated care priorities and the education of generic staff in end of life care. Despite the ongoing work, to date a higher number of patients compared to some areas in Wales are dying in hospital when it is their preference to be at home or in a hospice bed. Models and pathways of care that support timely discharges and enable services to provide flexible care which prevents readmissions need to be improved. ASSESSMENT In order to meet the aspirations of the Delivering End of Life Care Plan, the local plan will need to set out how it will address each objective within the key themes. Examples of key work areas are listed under each theme: Supporting living and dying well Support advance care planning for care home residents within in Cardiff and Vale. Lead and support training for care home staff in advance care planning and EOL care. Detecting and identifying patients early Educate key staff within different care settings in EOL care. Develop ways to improve and monitor the quality of EOL care at ward level. Support GPs to identify patients for the palliative care register. Delivering fast effective care Re-structuring of the governance and performance management arrangements. Review and redesign of models of palliative care provision. Develop and support education initiatives for generic staff in EOL care skills across all care settings. Reducing the distress of terminal illness for the patient and their family Identify the palliative care spend across all care settings to maximise its use against the Plan. Develop patient and family reference group for end of life care that streams to local initiatives. Finalise local transition pathways for paediatric to adult services for palliative care. End of Life Plan Page 2 of 4 UHB Board Meeting 5 November 2013

3 Improving Information Develop systems to feed performance information to the Board for annual reporting on the delivery plan progress. Maximise access to information technology systems for specialist palliative care services. Targeting Research Equitable access to research and information for all patients across all care settings. Sustainable approach to recruitment into portfolio research projects. Delivering on multi professional research. Develop integrated research between care settings. The Delivering End of Life Care Plan is included as Appendix 1 and includes the detailed action plan required by Welsh Government. This plan was discussed at the Health Systems Management Board (HSMB) on 17 October The HSMB suggested some minor modifications and it was agreed that following these amendments the End of Life Plan should be recommended for approval by the UHB Board. The enclosed action plan has been amended accordingly for approval by the UHB Board. The Terms of Reference for the existing Palliative Care Board have been revised to ensure organisational-wide representation (in addition to the existing external representation). The HSMB supported the broadening the membership of the Palliative Care Board to include Clinical Board representation. The Chair of the Board will be the Executive Lead for End of Life care. This plan will be monitored via the Palliative Care Board.. RECOMMENDATION The Board is asked to: APPROVE the The Delivering End of Life Care Plan End of Life Plan Page 3 of 4 UHB Board Meeting 5 November 2013

4 Financial Impact Quality, Safety and Experience Standards for Health Services Risks and Assurance Equality and diversity There is no specific funding stream associated with the Delivery Plan. The services to support delivery of the End of Life Care Plan are managed within the agreed budgets. Service Level Agreements and Welsh Government funding support delivery of the services provided by Third Sector organisations. This plan seeks to improve the patient and carer experience of end of life, supporting them in their preferred place of death. The plan contributes to compliance with Standards 1,5,6,7, 8, 9, 10, 14, 15, 18, 19, 23,25 & 26 This plan seeks to reduce gaps in the pathway. EQIA for the EOL Plan is attached. End of Life Plan Page 4 of 4 UHB Board Meeting 5 November 2013

5 TOGETHER FOR HEATLH - DELIVERING END OF LIFE CARE PLAN A Delivery Plan up to 2016 for NHS Wales and its Partners 1. INTRODUCTION The 5 Year NHS Plan, Together for Health, sets out the programme for health and healthcare in Wales and Together for Health - Delivering End of Life Care, A Delivery Plan up to 2016 for NHS Wales and its Partners forms part of a number of delivery plans for services areas. The plan sets out what is required for the delivery of measurable excellence in end of life care services. This document provides the Cardiff and Vale response to this plan. 2. BACKGROUND AND CONTEXT Together for Health Delivering End of Life Care 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 Responsibility to develop and deliver actions Population outcome indicators and NHS performance measures The vision: For our population we want: People in Cardiff and the Vale of Glamorgan to have a healthy, realistic approach to dying, planning appropriately for the event People dying in Cardiff and the Vale of Glamorgan 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 The document sets out the following outcome 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 Cardiff and Vale who die intestate The Drivers: 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. Page 1 of 20

6 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 centered 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 Cardiff and Vale UHB is comprised of two acute district hospitals, the University Hospital of Wales (UHW) and the University Hospital of Llandough (UHL). In addition there are four hospitals providing medical and mental health inpatient beds. The UHW is the third largest University hospital in the UK and employs approximately 14,000 staff. The UHB acts as a tertiary unit from around Wales for many cancer site specific diseases; this increases the flow of cancer patients through the organisation in addition to the local community. The UHB has a Teenage Cancer Unit and hosts the Children s Hospital for Wales. The specialist palliative care services are comprised of a consultant led hospital team which covers all the hospital sites, in addition there is a separate consultant led team for paediatrics. The community service is comprised of two separately commissioned consultant led specialist palliative care services. Marie Curie Cancer Care provide a 30 bedded inpatient Hospice based in Penarth and in addition provide a community service to the Vale and to Cardiff south. The hospice receives patients into the inpatient beds from all areas of Cardiff and the Vale. Marie Curie also provides a day therapy service to the Vale and its Cardiff south patients. George Thomas Hospice Care provide a community service to the north and central Cardiff zones; they do not provide inpatient beds but they do provide a day centre for access by their community patients. The Clinical Nurse Specialists provide a seven day face to face service for hospital and community patients, supporting the generic teams at weekends and bank holidays for new urgent referrals, for patients who are at the end of life or for patients who develop uncontrolled symptom problems, such as intractable pain. The Medical Consultants provide a 24 hour on-call service to support generic teams and hospices across South East Wales. Generic palliative care is provided by multidisciplinary teams across all care settings. End of life care at home is managed by GPs and out of hours primary care, nursing care is provided by a 24 hour district nursing service supported sometimes by care agencies. Night care is provided by UHB Health Care Support Workers with some additional input from Marie Curie Health Care Support Workers. The annual number of new patients referred to the whole specialist palliative care service within Cardiff and Vale during was 2258; 713 of these patients were admitted to the Hospice inpatient beds. The caseloads are predominately cancer patients but there is evidence of increasing numbers of non-cancer referrals to the services. Page 2 of 20

7 Overview of Local Health Need and Palliative Challenge: There are still high numbers of palliative care patients dying in hospital in comparison to other Health Boards in Wales and in comparison to the national average. Some of this relates to the difficulties of repatriation of patients nearer home and some relates to processes and resources that support us in getting patients home in a timely way. If a comparison is made between the two full years of 2011/12 and 2012/13, the number of deaths occurring at home has increased from 725 to 780, with home deaths as a percentage of all deaths increasing from 19.2% to 19.5%. Reviewing our processes and the way in which palliative care funding is allocated is essential in terms of making progress towards achieving the Delivery Plan vision and achieving the best outcomes for patients and their families. The UHB is unique in having two third sector providers and statutory providers within one Health Board area, this affords many advantages for the population. However, it will be necessary to ensure that we continue to seek to provide a joined up service for patients and professionals. The workforce is engaged in providing generic palliative care and we should through this plan, ensure that high practice standards are embedded in ward and community areas, seeking opportunities through this plan to include end of life care into transforming care and maximising opportunities for training. 4. DEVELOPMENT OF CARDIFF & VALE UHB DELIVERY PLAN FOR END OF LIFE In response to the Together for Health Delivering End of Life, 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 UHB Executive lead for End of Life care will need to report progress formally to the Boards against milestones in these delivery plans and publish these reports on their websites quarterly. A benchmarking review of palliative care services has been undertaken against the expectations set out for 2016 and have been used to help inform this local delivery plan. The Specialist Palliative lead clinicians have reviewed those areas that could be undertaken differently or collectively to maximise improvements and theses are set out as priority actions for 2013/14 within this Plan. The key risk to delivery is the wider organisational ownership of actions associated with end of life care. In order to mitigate these risks, the plan has been discussed with all Clinical Boards and agreement that there will be Clinical Board representation on the Palliative Care Board which will monitor implementation of the plan. As part of the Equality Impact Assessment, it was noted that the delivery plan will impact on carers because facilitating choice at the end of life may mean that caring responsibilities increase to enable people to die in their own homes. This is addressed in the action plan as part of considering the support and training for carers as well as the feedback mechanisms that are planned for individuals and their families. Page 3 of 20

8 5. SUMMARY OF THE PLAN - THE PRIORITIES FOR Following the completion of the benchmarking review of palliative care services, 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). (a) Supporting living and dying well The priorities for are: Support advance care planning for care home residents Support training for care home staff in advance care planning (b) Detecting and identifying patients early The priorities for are: Educate key staff within different care settings in end of life care Develop ways to improve and monitor generic end of life care at ward level Support GPs to identify patients for the palliative care register Support GPs to hold regular MDTs for palliative care patients on register (c) Delivering fast, effective care The priorities for are: Re-structuring of the governance and performance management arrangements Review and redesign of models of palliative care provision Develop and support education initiatives for generic staff in end of life care skills in all care settings (d) Reducing the distress of terminal illness for patients and their families The priorities for are: Identify the palliative care spend across all care settings to maximise its use against the Plan Develop patient and family reference group for end of life care that streams to local initiatives Finalise transition pathways for paediatric to adult services for palliative care (e) Improving Information The priorities for are: Develop systems to feed performance information to the Board for annual reporting on the delivery plan progress Maximise access to IT systems for specialist palliative care services (f) Targeting Research The priorities for are: Equitable access to research and information for all patients across all care settings Sustainable approach to recruitment into portfolio research projects Delivering on multi professional research Develop integrated research between care settings Page 4 of 20

9 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 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 Plans and their milestones are reviewed and are updated annually from March ACTION PLAN The following table sets out the detailed action plan that underpins the Delivering End of Life Care Plan Page 5 of 20

10 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 1(a) Support training for primary care teams to encourage patients to have in place plans for the end of life 1(b) Deliver training for GPs and Primary Care Professionals to provide care in community settings Each Locality to identify training lead for Advance Care Planning for care home staff and deliver and monitor the uptake of training in care homes to qualified staff. Ensure GPs are aware that as part of the GP contract, they can choose to take forward Advance Care Planning with Nursing Home residents (with capacity). This will be monitored through the GP QP system Deliver specific sessions on ACP as part of GP protected learning time. Need to increase the % of GPs who attend the Cardiff University GP short course for palliative and eol care. Ensure all matrons in care homes have access to complete the Cardiff University eol care module to enable end of life care to be led by senior team member. Supporting living and dying well % of people who have an advanced care plan in place Reduction in emergency admissions Improvements in the % of people who die in place of care % of people who die in place of preference improvements in the % of people who die in place of care Reduction in emergency admissions Noting the independent sector / contractor relationship. Different IT systems between providers/organisations. Noting the independent sector / contractor relationship. Release of clinical time to undertake training. 1 Nov 2013 In place and continuously monitored. 1 April April April 2014 Clinical Board Nurse, PCIC Head of Primary Care Head of Primary Care Head of Primary Care Clinical Board Nurse, PCIC 1(c) Improve communication skills of health professionals and social care teams to talk to patients regarding end of life plans Continue to support District Nurses to complete the Cardiff University EOL care module through WEDS. Improve access to health professionals and social care teams to access clinical skills training days including communication skills training and introduction of palliative and end of life study days Provide access to social care teams to access third sector study sessions related to eol care Improvements in the % of people who die in place of care Differences between organisations eg care plans, IT systems. 1 April 2014 Clinical Board Nurse, PCIC 1 January 2014 Clinical Board Nurse, PCIC Page 6 of 20

11 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 1(d) Specific focus on paediatrics to Ensure paediatricians are aware of the Advance and Emergency Care Planning Improvements in the % of people who die in place of 1 January 2014 Clinical Board Director, ensure Process and engage with it in a timely care Children & engagement at the right time with families. manner with individual families Women 1(e) Put in place lead pharmacists in each LHB to support improvement of medicine management at the end of life Lead pharmacist for palliative care for LHB should be part of the Local Palliative Board (LPB) Monitor the pharmacy governance issues for Specialist Palliative Care through the LPB Reduction in emergency admissions related to access to drugs improvements in the % of people who die in place of care improvements in numbers of people dying in preferred place of care 1 January 2014 Service Director for Pharmacy and Medicines Management Reduction in clinical incidents & complaints related to access to drugs 1(f) Support the delivery of training and support for carers Link to the Patient Experience Facilitator Project in C&V Monitor the success of the Marie Curie Cancer Care All Wales carer s project. There will be a dedicated carer s team based at the Marie Curie Hospice from November Improvements in the % of people who die in place of care improvements in the % of people who die in place of care Improvements in % number of carers who report they were fully involved Improvements in % of carers who report they received adequate information Data collection linked with work to implement the Carers measure As above 31 October 2014 Assistant Director, Patient Experience Page 7 of 20

12 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 2(a) Work with GP practices to encourage the use of Palliative Care registers for patients, including paediatrics, with less than one year life expectancy and in particular, non-cancer patients The use of the PC registers will be monitored through the number of MDT meetings held for the register through primary care contracts and reviewed and as part of the Local Palliative Board The % of patients on palliative care register will be monitored annual through the GP contact For those patients on the palliative care register - Multidisciplinary case review meetings should be held 3 monthly (part of QOF indicator PC002W with provision of year end evidence) Need to increase the frequency that GPs include non-cancer patients on the palliative care register and monitor through QOF Detecting and identifying patients early Reduction in emergency admissions improvements in the % of people who die in place of care improvements in numbers of people dying in preferred place of care improvements in the % of patients on the palliative care register 1 April 2014 Head of Primary Care 2(b) Promote the benefit of regular multi-disciplinary team meetings to discuss patients on a Palliative Care register Multidisciplinary case review meetings should be held 3 monthly; part of QOF indicator PC002W. Monitor that the GP practices are holding regular meetings through the annual primary care contract and LPB Improvements in the % of people who die in place of care Reduction in admissions 1 April 2014 Head of Primary Care 2(c) Encourage professionals to improve their communication and clinical skills to recognise Where ward areas have a high number of patients in receipt of end of life care due to the nature of their speciality aim for 10% of the nursing workforce to complete the Cardiff University Distance Learning End of Life Care Module Improvements in numbers of people dying in preferred place of care Reduction in complaints relating to palliative care. Releasing staff from clinical work. Cost of module and release time. 31 December 2015 Clinical Board Nurses (all) Page 8 of 20

13 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD patients entering the palliative phase of illness End of life study days will become part of the Cardiff & Vale key clinical skills programme for generic staff. Ward managers should release staff to attend these days MHSOP to identify registered nurses (target to be agreed) to attend the Cardiff University eol module to maximise standards of care and to improve the opportunities for patients to remain in their usual place of care. MSHOP nurses who have completed the module act as a link nurse to the palliative care team 1 April 2014 Clinical Board Nurse, Mental Health All Care Homes to have a matron or a nominated senior nurse who has completed the Cardiff University EOL Module as a minimum requirement to lead and manage end of life care Reduction in emergency admissions End 2014 Clinical Board Nurse, PCIC Plan in place to commence support to the third sector to up-skill through the support of secondments and rotation of specialist staff and ward staff through the specialist palliative care team and to key ward areas depending on training needs 1 April 2014 Clinical Board Nurse, PCIC Improve access for hospice staff to Cardiff & Vale key skills training and education and increase the numbers of senior key hospice staff who have completed the Cardiff university end of life care module Note independent sector and ability to influence. 1 January 2014 Clinical Board Nurse, PCIC Page 9 of 20

14 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 2(d) Develop one-stop referral information 1 April 2015 Palliative Provide regarding all specialist teams and 24 Care Lead information so generalist teams hours support line will be available on the intranet sites Consultant know how to 1 January 2015 Head of access support from specialist palliative care services, including paediatricians Primary Care will disseminate via Intranet, Newsletter, to Practice Managers and Lead GPs Primary Care 3(a) Plan and deliver high quality evidence based end of life care services through well organised multi disciplinary teams, in line with national guidelines such as The Welsh Quality Markers End of Life Care (2012) Specialist Palliative Care will be monitored through commissioning procedures in line with Service Level Agreements and in line with C&V policy and through HIW Peer Review Outcomes of Specialist services will be regularly reviewed to evaluate quality of services and workloads through the LPB. Opportunities for joint working between specialist teams and integration should be reviewed as part of this process. Statutory and third sector Specialist Palliative Care Team caseloads will be reviewed and benchmarked as a whole C&V UHB service through the LPB Opportunities for cross-organisational boundary working will be considered where this is in the interests of patients and families. Specialist staff contracts should support this option. Delivering fast, effective care 1 April 2014 Palliative Care Board Opportunities should be sought to develop partnership posts between the Page 10 of 20

15 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD third sector and statutory care settings where this will contribute to the quality of patient care Improve systems with unscheduled care to identify palliative care patients early during their readmission process Monitoring of rapid discharges and CHC fast track discharges will be part of the data set dash board for palliative care Improve and monitor the recording of PPC by all specialist providers through the CANISC system and where there is use of advance care plans Improve processes that support discharges home or to nursing homes from the Marie Curie Hospice in a timely way Ward managers to lead on and facilitate the discharge of CHC fast track 3 patients from ward to home Improvements in numbers of people dying in preferred place of care improvements in the % of people who die in place of care Improve processes and monitor through the PC data set dashboard timely rates of discharge home for CHC fast track 3 patients from all areas Monitor the rates of discharge home for CHC fast track 1 and 2 patients from hospital and hospice as part of the palliative care dash board Develop a Task and Finish Group to scope the current provision of end of life care support at home to ensure a Page 11 of 20

16 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD thorough review of models of night care and flexible day care to support patients to achieve their preferred place of care Develop clear pathways to support patients at home - which provides equitable access to flexible care for all patients and ensures quality of care is not compromised 3(b) Ensure effective sharing of information between services 3(c) All NHS and Third Sector provider organisations providing end of life care must participate in relevant National clinical audits, to drive continuous service improvement Monitor the timely access to social services care for palliative care patients which do not meet fast-track CHC 3 but who are eligible for the palliative care register (prognosis 6 months) as part of the palliative care dashboard Maximise the access of the third sector specialist staff (CNS and medical staff) to clinical portal use to improve efficiency and reduce clinical risk All specialist services should be inputting weekly MDT data onto CANisc for new, follow-up and complex patients. This should be monitored through commissioners Integrated joint audits between specialist palliative care services should be developed and monitored through the PCCG These audits should be reviewed/monitored by the LPB National audits will be undertaken by both statutory and third sector providers and monitored through the LPCB Reduction in emergency admissions 1 April 2014 Head of Information End of 2014 Palliative Care Board Page 12 of 20

17 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 3(d) Work through the Palliative Care Implementation Board to plan strategically specialist facilities and community hospice at home style provision The current Local Palliative Care Group will develop and expand as a clinical group (PCCG) and in addition there will be a newly developed C&V Local Palliative Board (LPB) The nominated C&V executive lead will link to the LPB. Develop robust governance channels for specialist and generalist palliative care services which link to the clinical leads and to the LPB The LPB will include local authority senior support in attendance at the meetings and the attendance of third sector managers as part of the group. The LPB will become the hub of decision making about the developments of local services and will review performance and governance of the statutory and third sector palliative care services (in collaboration with the localities) in order to develop an overall picture of the EOL service provision across C&V. 31 January 2014 Palliative Care Board 3(e) Collaborate with the Palliative Care Implementation Board and Welsh Government to address capital investment needs, such as service redesign of Any redesign of palliative care services in C&V will be reviewed though the new local palliative care board (PCB) and commissioning manager Clinical Board members, management teams and frontline staff understand what families and individuals experience at the end of life and can identify and deliver improvements Resources for patient Experience Team 31 March 2014 Assistant Director, Patient Experience Page 13 of 20

18 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD specialist units 3(d) Deliver Peer Review of palliative care Statutory and commissioned specialist palliative care providers will participate in annual peer review process. This will be monitored through the commissioning managers a part of the SLA and reviewed by the LPB Peer review is currently voluntary for third sector providers 1 April 2014 Palliative Care Board 3(e) Establish mechanisms to gather and act upon feedback from individuals and families A system to be developed to support the identification of trends associated with patient experience for palliative care patients. 1 April 2014 Assistant Director, Quality & Safety 4(a) Plan, secure and deliver well coordinated palliative and end of life care on a 24/7 basis in line with published guidance Reducing the distress of terminal illness for patients and their families Review of the specialist palliative care teams operational plans will be undertaken through commissioners and the LPB. Clinical Nurse Specialist 7 day services should be monitored through the commissioners as part of the SLA and reviewed through the LPB to ensure equitable service provision across all settings. The provision of current and future specialist palliative care should be in collaboration with the PCB, the Palliative care clinical leads, the UHB commissioning team and through the All Wales Palliative Care Board. 1 April 2014 Palliative Care Board Page 14 of 20

19 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 4(b) Support all providers who care for dying patients to participate in the All Wales audit of the Integrated Care Priorities documentation Improve the returns of the ICP variance sheets from the community areas and hospice areas to accurately reflect its uptake and use Manage the variance returns from the community and monitor the quality of care documented. 1 February 2014 Palliative Care Board 4(c) Clear funding streams for specialist palliative care services which are above the minimum levels advised by the Palliative Care Implementation Board 4(d) Support participation in regular surveys of the experience of palliative care patients and their families The UHB clinical leads and the PCB should be kept informed of any risks in allocation of UHB funding to the statutory or provider organisations Ways to inform the public about the outcomes of the All Wales I want great care survey should be developed with all providers The UHB Patient feedback framework should be used to focus on experiences of people with end of life care Individuals and families have a range of channels through which they can provide their views on their experiences Resources for patient Experience Team Immediate continual March 2014 and Executive Director Therapies Health Sciences Assistant Director, Patient Experience of & 4(e) Ensure transition arrangements from child to adult palliative care services are in place Monitor transition arrangements between Ty Hafen and Marie Curie Hospice 1 January 2014 CBD, Children & Women working with lead from Ty Hafan Page 15 of 20

20 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 4(f) Put in place 24 hours paediatric palliative care telephone advice rota 1 September 2014 Clinical Board Director, Women Children & 4(h) Create a patient and families Reference Group to support the work of the PCIB in overseeing the plan There needs to be a patient and families reference group developed which has representation from all provider areas; this will link to other UHB work Establishment of a group with clear aims and terms of reference Difficulty in recruiting members March 2014 Assistant Director, Patient Experience 4(i) Ensure CaNISC is accessible and links with other relevant IT systems e.g. GPs Review of the GP project for the use of CANISC through the LPCB. Currently being trialled in two surgeries (Cathays) CaNISC should progressively be accessible through emergency care areas CaNISC should be accessible to all specialist providers CaNISC should be accessible to community CNSs out of hours at weekends through relevant IT devices Explore whether Specialist palliative care teams could link to PARIS system to improve the communication with DNs and reduce risks to patients. 1 April 2014 Palliative Care Consultant, Lead for Research Page 16 of 20

21 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 5(a) Regularly review information available to ensure it is targeted to meet the needs of the patients and their families, including those with difficulties in communication or understanding Monitor and influence the Macmillan Information Service project and exit plan at UHW to ensure that the information hub continues to be dedicated to cancer and palliative care Improving information Macmillan Centre continues to provide a service to meet the needs of individuals and families Sustainability of staffing for the centre August 2014 Assistant Director, Patient Experience 5(b) Ensure the best possible IT and communication links to give clinical staff fast, safe and secure access to the information needed anywhere in Wales 5(c) Publish transparent information on the performance of NHS and voluntary sector providers including safety, effectiveness and patients views Clinical portal access is only available to a few staff in the third sector organisations this leads to risks and in-efficiencies. Where possible if third sector staff are commissioned to provide a palliative care service for the C&V UHB they should have improved access to IT, this is especially relevant for staff working weekends Develop ways of sharing/publishing the I want great care outcomes Review the availability of third sector performance through the PCB 1 April 2104 Executive Director of Therapies and Health Sciences 1 April 2014 Executive Director of Therapies and Health Sciences Page 17 of 20

22 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD 5(d) Record and use clinical information for all palliative care patients using CaNISC. This should be monitored as part of the reviews of the statutory and third sector All teams should progress to the weekly recording of MDT data in line with the quality standards 1 January 2014 Palliative Care Leads 5(e) Each Local Health Board to report performance against specific end of life quality indicators to the Implementation Board annually Currently the statutory teams performance is linked to the cancer services and fed back through to WG. Need to develop systems for - how this information is fed into the health board - whether the performance of the third sector providers is fed into the health board as the returns are completed electronically statutory team only 1 February 2014 Executive Director of Therapies and Health Sciences 5(f) Publish regular and easy to understand information about the effectiveness of end of life care services The PCB will be responsible for making available the performance data on end of life care 1 February 2014 Executive Director of Therapies and Health Sciences 6(a) Foster a strong culture of research Develop a medical and clinical nurse research champion for each specialist palliative care team which links to the Marie Curie Palliative Care Research Centre Improve multi-professional research opportunities within the organisation working with Cardiff University to identify opportunities for Allied Health Targeting research Improved information giving to patients and families relating to research access An increase in recruitment of community based patients/carers to studies A broad portfolio of research reflecting patients needs in functional as well as physical domains Lack of communication across sites on study access Lack of staff time and resource if R&D processes complex and unsupported Staff time and resource availability 1 March 2014 Palliative Care Lead Consultant Page 18 of 20

23 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD Professional engagement. Support of UHB and Cardiff University ambitions to engage a wider range of healthcare professionals in research development and delivery 6(b) Work closely with the National Institute for Social Care & Health Research (NISCHR) 6(c) Work in partnership with cancer research organisations throughout Wales Ensure equitable access to NISCHR portfolio palliative care studies which are open to recruitment w Ensure sustainable recruitment through ongoing funding of NISCHR CRC palliative care research staff who will work across settings, including into hospice setting within the UHB. Monitor the partnership working and activity between the cancer research organisations through the PCB Resolution of research indemnity issue for NHS patients participating in research whilst under the care of third sector organisations Successful, sustained recruitment of patients to palliative care portfolio studies across all care settings; success assessed by benchmarking with other similarly sized research networks across the UK Equity of access to research across all settings; high quality research governance processes in third sector settings with appropriate access to UHB R&D mentorship and support Removal of indemnity barrier to patient research access whilst, for example, a hospice inpatient. Loss of funding for NISCHR CRC Palliative Care research staff Lack of support for independent providers with R&D processes Reluctance of independent partners to participate in research because of concerns in relation to the burdens and uncertainties surrounding R&D processes and indemnity. 1 April 201 Palliative Care Consultant, Lead for Research 1 April 2016 Palliative Care Consultant, Lead for Research 6(d) Offer all appropriate patients access to a relevant clinical trial 6(e) Actively support the All Wales Improve and monitor the access to clinical trials in all palliative care settings including all DGHs Monitor the number of NISCHR/NIHR portfolio studies undertaken within the UHB; monitor the number of sites (hospital, hospice, community) in which studies are open Monitor the commitment of specialist palliative care and generic palliative care in relation to supporting the Attract high quality portfolio studies into the UHB from across the UK, ensuring patient and family access; Provide opportunities to develop studies from within the UHB in response to perceived patient/family need. 1 April 2016 Palliative Care Consultant, Lead for Research 1 April 2014 Palliative Care Consultant, Page 19 of 20

24 OBJECTIVES ACTIONS EXPECTED OUTCOME RISKS TO DELIVERY TIMESCALES LEAD Integrated Care Priorities audit and research programme 6(f)Support and encourage protected research time for clinically active staff 6(g) Promote the use of key research facilities such as the Marie Curie Research Centre programme through the PCCG Lead for Research Develop, identify and monitor protected time for research for Specialist Palliative Care staff through Personal Development Plans in line with clinical commitments and responsibilities Promote engagement with Marie Curie Research Centre in relation to developing new areas of research for all organisations Improved screening of patients and families for involvement in appropriate research studies; Sustained recruitment to portfolio studies. Access to methodological support to develop studies capable of answering clinical questions of importance to patient care within the UHB 1 February 2014 Palliative Care Leads 1 March 2014 Palliative Care Consultant, Lead for Research Page 20 of 20

25 Equality Impact Assessment Section A: Assessment Name of Policy End of Life Delivery Plan Person/persons conducting this assessment with Contact Details V Warner and S Morgan Date 24 th October The Policy Is this a new or existing policy? This is a new delivery plan. What is the purpose of the policy? The purpose of the delivery plan is to set out the objectives and actions across Cardiff and Vale UHB to improve patient experience at the end of life. 1

26 How do the aims of the policy fit in with corporate priorities? e.g. Operational Plan, Capacity Plan The aims of the policy fit with the 5 year NHS plan Together for Health Delivering End of Life which is a national strategy to achieved measurable excellence in palliative care and at end of life. Who will benefit from the policy? Patients who are at the end of life, their carers and the staff who care for them. What outcomes are wanted from this policy? People in Cardiff and the Vale of Glamorgan to have a healthy, realistic approach to dying, planning appropriately for the event People dying in Cardiff and the Vale of Glamorgan to have access to high quality care where ever they live and die, whatever their underlying disease or disability, devoid of any prejudice in relation to their personal situation. Are there any factors that might prevent outcomes being achieved? (e.g. Training/practice/culture/human or financial resources) This delivery plan requires a change in practice and culture that allows more flexible, creative and realistic approaches to planning for death. It requires clinical professionals and patients and communities to talk more openly about dying and about preferences related to dying. 2

27 2. Data Collection What qualitative data do you have about the policy relating to equalities groups (e.g. monitoring data on proportions of service users compared to proportions in the population)? This includes any consultation or engagement activity undertaken so far. There is currently no equality monitoring information available to inform the development or implementation of this delivery plan. What quantitative data do you have on the different groups16 (e.g. findings from discussion groups, information from comparator authorities)? (See Office National Statistics website) There is currently no quantitative data available to inform the development or implementation of this delivery plan specific to end of life care except related to age and gender. There is recent census information that provides an overview of the equality strands across the population. Please indicate the source of the data gathered. (e.g. Concerns/Service/Department/Team/Other) What gaps in data have you identified? (Please put actions to address this in your action plan) There is insufficient data and information currently available to undertake robust equality monitoring of this delivery plan. 3

28 3. Impact Consider the information gathered in section 2 above, comparing monitoring information with census data as appropriate (see Office National Statistics website) and considering any other earlier research or consultation. You should also look at the guidance in Appendix 1 with regard to the protected characteristics stating the impact and giving the key reasons for your decision. Do you think that the policy impacts on people because of their age? (This includes children and young people up to 18 and older people) This delivery plan will impact more on older people since it relates to end of life care. Do you think that the policy impacts on people because of their caring responsibilities? The delivery plan will impact on people because of their caring responsibilities because facilitating choice at the end of life may mean that caring responsibilities increase to enable people to die in their own homes. However contributing to care at the end of life may result in changed perceptions and reactions to death for the carers involved as they are contribute positively, and with support from professionals, to improving the experience for their family member or friend. Do you think that the policy impacts on people because of their disability? This delivery plan will impact on people because of their disability because many of these disabilities are associated with life limiting conditions. The expressed intention of the delivery plan is to improve end of life care for these groups of people. 4

29 Do you think that the policy impacts on people because of Gender reassignment? There is no impact on people because of gender reassignment Do you think that the policy impacts on people because of their being married or in a civil partnership? There is no impact on people because of their marital or CP status. Do you think that the policy impacts on people because of their being pregnant or just having had a baby? There is no impact on people who are pregnant or just having had a baby. Do you think that the policy impacts on people because of their race? There is no impact on people because of their race. Do you think that the policy impacts on people because of their religion, belief or non-belief? There will be an impact on people because of their religious belief or non-belief as the implementation of the delivery plan will enable them to be more open about their wishes associated with belief or non-belief at the end of life. Do you think that the policy impacts on men and woman in different ways? The delivery plan does not impact men or women in different ways. 5