Hillingdon End of Life Joint Strategy 2016 2020 1
Contents 1. Introduction... 3 2. Vision for End of Life Care in Hillingdon... 3 3. Consultation to support development of the strategy... 4 4. National Context... 6 5. Local Context... 7 6. Key Issues to be addressed through this strategy... 9 7. Hillingdon Strategic Objectives... 12 8. Summary... 15 Appendix 1 - National Palliative and End of Life Ambitions and Hillingdon Key Strategic Objectives Matrix... 16 Appendix 2 Hillingdon End of Life Forum Action Plan... 17 Appendix 3 Engagement/Patient, Carer Voices... 20 2
1. Introduction This joint strategy is the product of a collaboration across Health and Social Care where commissioners, providers, patients and carers have all contributed to our vision for Hillingdon. Progress will be monitored by the End of Life Forum, a group of key stakeholders that meet regularly to improve End of Life Care in the borough. A great deal has been achieved to improve the End of Life care for patients and carers. However, it is acknowledged that a great deal more could be done. This document outlines Hillingdon s vision for end of life care, identifies the key issues and gaps in service delivery and articulates how our Health and Social Care services will commit to achieve this vision over the next four years. Hillingdon Clinical Commissioning Group and the London Borough of Hillingdon will work with key providers to realign and better integrate services that are provided to support people towards the end of their life including terminal care. We will maximise the dignity of the person at end of life as well as relieve as much as is possible the stress for them and their carer s and/or family. We will build on the achievements to-date to ensure that people at end of life are able to be cared for and die in their preferred place and to ensure that these people are only admitted to hospital where this is clinically necessary or where a hospital is their preferred place of care or death. 2. Vision for End of Life Care in Hillingdon People of Hillingdon will be supported to be cared for and die with dignity and in a place of their choice. They and their family and carers will have the opportunity to discuss their wishes in advance whilst being assured and informed about the care that is being co-ordinated on their behalf. People and their families and carers will have easy access to help and information regardless of time of day and confident that health and social care professionals are working together on their behalf. 3
3. Consultation to support development of the strategy Input from carers who have experienced end of life services and of those patients and carers currently using services will provide an essential role in coproducing end of life care services. We will use an Equality Impact Assessment to better understand how to carry out targeted engagement and ensure that a representative sample of patients and carers are given the opportunity to inform service design. Central to this will be to monitor via provider contracts patient and carers experiences of services and use data from experiences of services. Engagement and involvement will be an on-going process and will include, but not be limited to patient / resident groups. This strategy has been produced and refined by harnessing patient and carer views both nationally and locally. A full outline of engagement sources are outlined in Appendix 3. Local engagement has identified a number of key themes: Key Themes How these align to the strategy People would like support to navigate the health and social Care Co-ordination forms a core objective for our strategic vision care landscape Focus on building on integrated working through co-location and shared People would like a single point of contact incentives across provider organisations People would like to be seen as a person and not just a Developing our IT infrastructure and increasing Co-ordinate My Care usage series of symptoms across all provider organisations Many people feel lonely and would like face-to-face Significant focus on patient identification company Developing the pan-hillingdon education and training programme Engaging and linking with all stakeholders and work programmes such as Older People s Integrated Model of Care, Carers Strategy and Hillingdon4All 4
Key Issues Identification Access Main Actions Nursing links Integrated Model of Care Ongoing training programme Best practice to engage hard-to-reach groups Care Planning and Co-ordination Benchmarking and performance audit Appropriate level of bereavement support Greater investment in front line staff (District Nursing, Clinical Nurse Specialists and General Practitioners Commission a new integrated model of care Improve access to night services Improve access to carer support services Improve access to packages of care Ensure access to hospice and continuing care better reflects local need Ensure all providers using co-ordinate my care IT platform Integrate IT systems, including NWL Care Information Exchange Engage hard-to-reach groups Build Care Co-ordination in to new integrated model of care CCG and local authority to design models for jointly commissioning services Staff Support, Education and Training Provide ongoing good quality education and training programme Communicate available support, education and training to all relevant health and social care professionals Particular focus for training and support to: GPs, Practice Nurses, Community Nursing, Acute teams, Nursing/residential home staff, social care, and third sector Strengthen District Nursing and Community Matron links with residential and nursing homes IT Infrastructure Improve the availability of relevant electronic patient information Embed robust consent process to share information at the time of care Embed co-ordinate my care across all health and social care providers Agree and clarify single electronic care planning process Introduce a patient accessible IT tool for patients to access and control their own health record 5
4. National Context End of Life Care is a national priority for health and social care organisations as evidenced by the recently published Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. This document is a collaboration of national health and social care organisations (the National Palliative and End of Life Care Partnership) to provide local leaders with a framework for end of life care. It is based on key national papers published over the past few years starting with The End of Life Strategy-Promoting High Quality Care for Adults at the End of Life 1 over the past. The framework sets out six ambitions that stem from patient and carers views following the Every Moment Counts provided by National Voices and the National Council for Palliative Care. The six ambitions are: 1. Each person is seen as an individual 2. Each person gets fair access to care 3. Maximising comfort and wellbeing 4. Care is coordinated 5. All staff are prepared to care 6. Each community is prepared to help NHS England have reported in their Actions for End of Life Care: 2014-16 report that approximately three quarters of deaths are expected, so there is potential to improve the experience of care in the last year and months of life, and those close to them, each year. High quality generalist end of life care is required for all these people, and can be delivered by non-specialist health and care staff as part of their core work, provided they have adequate time, education and training, and support, to do so. A proportion of these people will have complex needs requiring access to advice and/or direct care from professionals trained in specialist palliative care. Currently up to 170,000 people receive specialist palliative care each year but this is likely to be an underestimate as there is growing recognition of unmet need, especially for those with non-cancer conditions and harder-to-reach population groups. Currently there are 15 million people in England with a long term condition (LTC). By 2025, the number of people with at least one LTC will rise to 18 million. The number with two or more LTCs is projected to increase from 5 million to about 6.5 million. Most of these people will need end of life care as they approach their last years, months and days of life. 1 Source: Department of Health 2008 6
Around half a million carers provide support to people dying at home of a terminal illness. The cost to family carers may include lost earnings, 24 hour care and physical and mental health consequences, some of which may be permanent. Between 2001 and 2011, the number of unpaid carers has grown by 600,000, with 1.4 million people providing fifty or more hours of unpaid care per week. 2 5. Local Context End of life care plays an increasingly important role in meeting population health needs, which generally vary based on age, gender, ethnicity, levels of affluence, living and working conditions and geography. By October 2015, the Hillingdon Clinical Commissioning Group (CCG) GP registered population was estimated to be 305,000. The percentage of people living in each of the three localities that make up Hillingdon is relatively evenly split with 35% of residents living in Hayes and Harlington, 33% living in Uxbridge and West Drayton and 32% living in Ruislip and Northwood. The proportion of older people over 65 years of age in Hillingdon is slightly higher than London but lower than England. 20% of residents in the North are aged 65+ 10% of residents in the South are aged 65+ The distribution picture is similar with 75+ making; 10% of the population in the North are aged 75+ 5% of the population in the South are aged 75+ In terms of population growth, Hillingdon s population is predicted to increase by between 4,000 to 5,000 people per year over the next five years and beyond. The main driver for population growth between 2015 and 2020 is natural change (i.e. 15,000 more births than deaths). Net migration is expected to account for approximately 6,300 persons over the same period. By 2020 an increase in 65 + age group is estimated to be over 700 people per year, broken down by: 85-89 by an extra 110 per year 75-84 by an extra 220 per year 2 Source: Actions for End of Life Care: 2014-16, NHS England 7
65-74 by an extra 360 per year Deprivation is lower than the England average and is not equally distributed across the borough with small areas in the South falling in the 20% most deprived quartile nationally. Deprivation is thus higher in the South of the borough. The average number of deaths per year in Hillingdon for the period 2008-2012 was between 1800 and 1900. People aged 65+ accounted for 85% of all deaths (88% in the North and 82% in the south) People aged 75+ accounted for 70% of all deaths (76% in the North and 65% in the south) Percentage of deaths in both those aged 75+ and 85+ are lower than national average but higher than London average though not significantly different More deaths in 75+ in Care homes based in the North than in the South (or more deaths in Hospital with residents in the South). This appears marked in 95+ but to note the number is really small and would advise data to be interpreted with caution Over half (56.5%) of Hillingdon s 65+ reside in the South 3. There are more care home beds per 1000 population for 75+ based in the North (88/1000) than in the South (56/1000). These figures are significantly lower than the National average-114/1000) 4. Based on current evidence, there does not appear to be a relationship between deprivation and home or care home deaths. 5 Overall, it would appear that there is more end of life activity in the south but relatively more end of life Care resources or care homes and beds in the north. This might be one of a number of reasons for the higher proportion of hospital deaths in the south and inversely higher proportion of deaths in Care homes in the north. There is a need to explore this thinking further. The 3 main causes of death in Hillingdon and recorded on death certificates as primary underlying causes were cardiovascular disease (29.0%), cancers (28.0%) and respiratory disease (14.5%). Respiratory causes of death rose to 34.3% if mentioned or recorded as contributory to the cause of death. Alzheimer s and forms of Dementia accounted for about 12% and though it is the fourth cause of death, this is rising. In the last 3 years, deaths from Cardiovascular, Cancer, Respiratory causes appear to be falling while the number and proportion of deaths from Alzheimer s and forms of Dementia are rising. All these causes are considered demanding of end of life care. Overall in the last decade, the proportion of deaths in hospitals has fallen from 71.4% in 2004 to 53.5% in 2013. Locally, between 2010-2014, the proportion of people dying in Care Homes has risen from 15.8% to 18.4%. Over the same period, deaths in own home appear to be mixed and the trend is 3 Source- ONS, 2014MYE 4 www.endoflifecare profiles- for Local Authorities-Hillingdon 5 Source: PCMD, ID2015 8
not as established but currently around 20%. The average number of deaths in the local Hospice is small (under 5 people). Percentage of deaths in Hospice and care home is significantly lower than National, Regional or comparative CCGs. Nationally and in most instances, it is not possible to distinguish between deaths in the local hospital from those in the Hospice if the latter is located in the hospital. So hospital deaths might be an over count and hospice deaths an undercount. 6. Key Issues to be addressed through this strategy We have identified five key issues that impact on the delivery of end of life care services and achievement of our vision. A matrix outlining how these link with the six ambitions is shown in Appendix 1. Our local End of Life action plan is shown in Appendix 2. 6.1 Issue 1 - Identification Although Hillingdon work under the NHS England definition of end of life care i.e. the last year of life, we fully acknowledge that the trajectory of different conditions mean that for some, end of life care refers to the last few years of life, whereas for others, this could be a matter of months, weeks, days or hours. In the case of sudden unexpected death, the predominant focus of end of life care may be on the period following death. Despite a majority of deaths being expected, many people are not given the opportunity to plan and document their wishes. Identification cuts across health and social care where staff may lack the skills to identify those as end of life or the confidence and/or support to initiate difficult conversations. Many staff feel they do not have the resource to provide these conversations and the inevitable administration of completing the documentation. Additionally, some sectors have transient staff that requires ongoing education and training. Staff need easy access to all the available support so they can better navigate patients, carers and families to fulfil their needs. The aim is to identify those people who are approaching the last year of life. The identification of these groups enables individuals to receive well-coordinated care in their preferred setting and reduces uncertainty and unnecessary admissions to hospital. Identification and advance care planning can take place in all settings: primary care, care homes and hospitals (both in and out-patients). Appropriate and timely identification of these groups requires training for all those who may be involved. If care is planned it is more likely that patients wishes will be achieved and that health professionals will recognise when patients are approaching the terminal phase allowing for a peaceful and dignified death. 9
There are also challenges in engaging with hard to reach groups such as BAME groups, those from deprived areas, individuals with disability, individuals who are homeless etc. These people may find it difficult to access services and/or find end of life particularly difficult to discuss. 6.2 Issue 2 - Access The aim is to deliver a timely and responsive service tailored to the needs of the individual to ensure they receive the right care, in the right place, at the right time, throughout the last year of life. 6 Equity of access to health and social care services at end of life remains a priority irrespective of setting, diagnosis or ethnicity. This requires a full understanding of the population of the borough to target activities and ensure everyone has access to services they need at the end of their life, regardless of the time of day or how quickly they require this support. This includes generic frontline services (GPs, DNs, social services etc.), secondary care, specialist palliative care services and third sector. There is also a need to better interface with our carers strategy to ensure that carers supporting people at end of life have their needs addressed and receive much needed support. We recognise that more work is needed to address variances within nursing homes around capacity and standards where high quality care needs to be standardised across all homes. Bereavement support is currently uncoordinated and lacks a pathway to guide timely and appropriate support; bereavement support should be based on a formal needs assessment of carers. The community specialist palliative care team do not have the capacity to offer post death follow up, assessment or support to the carers of patients known to them The palliative care clinical psychology service provides a limited bereavement service to family members/carers who are already on their caseload and accessing psychological support when their relative dies. Michael Sobell House bereavement services are limited for relatives of patients who have died with them Harlington Hospice provides bereavement services and is open to referrals across the borough. A focus on normal or non-pathologised grieving should be promoted, alongside provision of a range of coordinated support services targeted at varying levels of need. 6 Source: National Institute for Health Research Dec 2015 10
6.3 Issue 3 - Care Planning and Co-ordination GP s have clinical responsibility in the community for patients as they approach the end of their life. District Nurses are key workers for these patients and undertake a full assessment before developing a care plan. If a person has complex symptoms or has a hospital admission the specialist palliative care teams will also be involved in their care. Each provider in Hillingdon has a different patient record system, which makes sharing information on interventions, support and care plans difficult. Whilst work is underway to introduce a single care plan, currently plans developed by District Nurses and GP s are not accessible to other professionals supporting the person and their carer(s). Hillingdon has focused on increasing the registration of patients on Co-ordinate My Care (CMC) and, with access to CMC for all providers, this platform could be further developed as a key information sharing tool. 6.4 Issue 4 - Staff support, education and training All clinical staff and high level administrative staff are involved in end of life care. Although there is general awareness of CMC, utilisation has been relatively limited due to several factors, including identification of appropriate patients and lack of awareness of the full range of the end of life care services. Increasing confidence of the workforce through guidelines on prognostication, regular training in difficult consultations, and training in advance care planning would help increase the earlier identification of these patients. Supporting practices in gaining access to CMC and maintaining their register would improve outcomes in end of life care. 6.5 Issue 5 - IT infrastructure At present all Hillingdon GP practices are on EMIS Web. Hillingdon CCG are working with local providers to improve the availability of relevant patient information, with consent at the time of care. The Co-Ordinate My Care Programme, an IT enabler is currently being rolled out to all providers in primary care, community care, secondary care, social care and urgent care services. Patient accessible IT tools are currently being explored to empower them. The real challenge or opportunity is ensuring that the separate IT systems do indeed enable up-to-date information being available to the patient, carer and professionals involved in the care of an individual. 11
7. Hillingdon Strategic Objectives 7.1 Strategic Objective 1 Improving Identification Hillingdon s new integrated model of care will increasingly identify people in the last phase of their lives. Increased resources for proactive support and active case management for patients and their carer s and families will interface with palliative and end of life care services, where they will receive high quality support regardless of place of residence, ethnicity or the time of day etc. We will be working with all staff who have contact with patients, especially those that work with older people to ensure they are supported in effectively identifying people considered as last phase of life. We will ensure that end of life is clearly defined, embedding the Gold Standards Framework philosophy across all health and social care professionals and using public health intelligence and local performance data feeds in to the End of Life Forum to help target people effectively. Some key actions for identification includes but is not limited to: Increase performance of co-ordinate my care Improve Community Matron and District Nursing links with residential homes Linking with the new integrated model of care Provide ongoing staff education and training programme Embed use of Prognostic Indicator Guidance Adopt best practice to engage hard to reach groups 7.2 Strategic Objective 2 - Access Providing equitable access to information and treatment remains a priority for the borough and this requires better integration between services so that health and social care colleagues are able to work collectively and quickly to provide the right care, in the right place, at the right time. We recognise the need to address pressures on our care services and will further explore best practice alternative care models with the view to commissioning integrated services from April 2017. Some key actions for access includes but is not limited to: 12
Carry out a comprehensive benchmarking and performance audit to inform commissioning plans Invest in appropriate bereavement support Invest in frontline staff such as district nursing, clinical nurse Specialists, general practitioners Commission an integrated model of care from 2017/18 Jointly commission end of life care services with London Borough of Hillingdon Improve access to night services Improve carers access to care support services Improve access to care workers and packages of care Ensure access to hospice and continuing care beds reflects local need Address access to financial support and information issues 7.3 Strategic Objective 3 - Care Planning and Co-ordination A consistent use of structured assessment tools across all relevant services, such as The Outcome Assessment and Complexity Collaborative (The OACC project), Gold Standard Framework (GSF), Patient Activation Measurement (PAM) is required for good quality care planning. Access to shared care plans for the person, their carer s and all professionals will be available and built on the Hillingdon Integrated Care Record development. It is important to ensure that care plans are implemented and updated as the needs of patients change through active case management. Essential to the success of this work is co-leadership between GPs, Community Services and Specialist Palliative Care. Progress will be achieved by effective partnership working with the patient s key worker and local organisations to deliver complete packages of care to people at the end of their lives. Some key actions for care planning and co-ordination includes but is not limited to: Drive the use of co-ordinate my care across health and social care, including in nursing and residential homes Integrate IT Systems, including the North West London Care Information Exchange Engage hard to reach groups to enable advance care planning Review alternative models of care around care planning and co-ordination Commission a new model of care from April 2017 Drive integration for end of life care between Health and Social Care 13
7.4 Strategic Objective 4 - Staff support, education and training We have developed a host of masterclass workshops to improve palliative care for multi-disciplinary professionals in Hillingdon. Ongoing support and training across the borough will focus on building skills and confidence in identifying patients and offering advance care planning discussions. Staff will receive tailored education and training to support people during the last phase of their life and will be supported by an appropriately resourced specialist palliative care team. In addition staff will have easier access to information to help them support patients and carers. Access to support and training for particular staff groups includes but is not restricted to: GP s Practice Nurses District Nurses Community Matrons Nursing/residential home staff Social Care professionals Third sector professionals Hospital Staff 7.5 Strategic Objective 5 IT Infrastructure We will continue to drive the effective use of IT to help deliver better services for end of life care where IT systems connect both staff and patients, where care is seamless and joined up. The following actions will be a focus for Hillingdon to support End of Life Care: Improve the availability of relevant patient information Embed robust consent process to share information at the time of care Embed Co-Ordinate My Care Programme throughout all providers in primary care, community care, secondary care, social care and urgent care services Agree and clarify a single care planning process for Hillingdon Introduce a Patient accessible IT tool where patients have access and control of their own health information 14
8. Summary Our vision for the development of end of life care services is based on national guidance 7 direction from local clinical networks (London Cancer Alliance, Accountable Clinical network for Cancer, NWL Region EOL Group work autumn 2015 and public engagement). Our aim is to deliver high quality care, in all settings and at all times. Equity of access, regardless of diagnosis, age, ethnicity, social status etc. is key. The changes required to achieve transformational change are: Improved co-ordination, integration and responsiveness of services, by introducing for example, a single point of access, integrated IT systems etc. Support and develop Specialist palliative Care teams to deliver a 7 day a week face to face service A comprehensive night service to support patients in the community Education for all staff in all settings, provided on a rolling basis Access to information and support The population of London Borough of Hillingdon is forecast to increase over the next 5 years. Life expectancy is increasing. Current services will be reviewed and developed to ensure there is sufficient capacity and skill mix to meet the increasing demand. This will help enable all people at the end of life to be cared for and die in their preferred place of care. End of life care aims to help all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. 8 7 Source: National Ambitions for Palliative & End of Life Care 2015-2020 8 Source: Department of health. Working definition of end of life care; operation framework baseline review of end of life care services. 2007 15
Appendix 1 - National Palliative and End of Life Ambitions and Hillingdon Key Strategic Objectives Matrix National Palliative and End of Life Care Partnership Ambitions 01 Each person is seen as an individual 02 Each person gets fair access to care Hillingdon s key strategic objectives Identification Access Care Planning and Coordination Staff support, education and training IT infrastructure The integrated care and support planning process within the new model of care for older people will increasingly identify people in the last phase of their lives. We will be benchmarking innovative models of care and tailoring services to ensure our diverse population has equal access to information and support irrespective of time of day. Care Planning will be responsive to individuals needs and preferences and the care will focus on achieving what is important to the patient and their carer. Patients will have equal opportunity to have Advance care conversations and have their care coordinated by the most appropriate care professional. Ongoing support and training across the borough will focus on building skills and confidence to identify patients earlier and instigate Advance care planning discussions. Staff will receive tailored education and training to support people during the last phase of their life and will be fully supported by an appropriately resourced specialist palliative care team. Information will be shared across health and social care providers, if the patient and/or their carer consents. Information will be what is deemed pertinent to improve quality of the care provided. 03 Maximising comfort and wellbeing 04 Care is coordinated Professionals identifying people in the last phase of their lives will be part of a wider team that ensure the entire pathway is coordinated. We will ensure care planning is provided in a setting that is familiar and comfortable to the patient. Increased resources for proactive support and active case management for patients and their carer s and families will interface with existing palliative and end of life care services. Staff will receive tailored education and training to support people during the last phase of their life and will be fully supported by an appropriately resourced specialist palliative care team. All relevant staff across health and social care will have ongoing access to education and training that is tailored. We will be reviewing staff access to information to ensure they can provide the best care possible. 05 All staff are prepared to care Support, education and training will cut across all health and social care where care professionals given the best possible opportunity to provide high quality care. 06 Each community is prepared to help We will build on engaging our local voluntary sector to identify and utilise the vast community support available to Hillingdon residents. We will review and utilise all community groups and services and ensure access to information and support is easily accessed. Staff will have easy access to information of existing community support and able to help patients and their carers access these. IT systems will integrate so that all health and social care professionals have access to important information to help them provide high quality care to patients and their carer s. 16
Appendix 2 Hillingdon End of Life Forum Action Plan Objective Strategic Focus Description Key Activities Identification Identification of appropriate people for End of Life Services Identify, monitor and tackle health inequalities in our local health and social care system Ensure that the voice of patients and carers are used to shape the design of future services We will be working with all staff who have contact with patients, especially those that work with older people to ensure they are supported in effectively identifying people considered as last phase of life. Early recognition that a person is entering their last phase of life will enable early discussions to take place and there suitable planning to ensure their wishes are realised. We will ensure that End of Life is clearly defined and that public health intelligence is used to target people effectively. Our aim is to provide the same high quality care to all patients and carers regardless of ethnicity, diagnosis and levels of deprivation etc. We recognise that dedicated efforts are required to reduce gaps that currently exist. Input from carers who have experienced EoL services and of those patients and carers currently using services will provide an essential role in co-producing end of life care services. We will use an Equality Impact Analysis to better understand how to carry out targeted engagement and ensure that a representative sample of patients and carers are given the opportunity to inform service design. Central to this will be to monitor via provider contracts patient and carers experiences of services and use data from experiences of services. Engagement and involvement will be an ongoing process and will include, but not be limited to patient / resident groups. Develop and monitor Primary Care Specification to support identification Increase Community Matron and District Nursing links with residential homes Establish links with Hillingdon s new model of care for older people to ensure proactive identification includes people in the last phase of their lives Comprehensive, ongoing staff support, education and training Ensure that all communication materials are provided in a variety of formats Ongoing audit of co-ordinate my care performance Public health outcomes profiles: existing inequalities age, levels of deprivation, place of care, ethnicity, diagnosis Better define gateway when frailty becomes palliative Ongoing gap analysis and review Agree comparators for benchmarking progress Develop and execute patient/carer engagement plan for End of Life strategy sign off Establish patient/carer engagement plan for future commissioning of services Secure patient/carer representation at end of life forum Monitor provider performance for collecting qualitative and quantitative data Access Personal Health Budgets Implement Personal Health Budgets Review and consistently improve access to services, including the fast track access where appropriate Make it easier for professionals to access services Address fast tracking discharge from hospital issues Syringe drivers in nursing homes to be picked up by matrons working in care homes Patients and carers need a person at the end of a phone 24/7 Rapid access to night sitting/nursing services throughout the night Update contact numbers of DNs and key workers and available to staff/patients/carers Review alternative models of care: Single Point of Access Ensure sufficient capacity to meet the needs of increasing demands due to longevity and increased population 17
Objective Strategic Focus Description Key Activities Ensure the strategy is aligned and remains aligned with the emerging integration agenda including Whole Systems Integrated Care (WSIC) and Better Care Fund (BCF) Ensure access to advice and support Clearly define our EoL Pathways and ensure that Care Plan Reviews form part of the process Both WSIC and BCF will complement our efforts for seamless End of Life Care. We will ensure there is no duplication so that pathways are built around the individual. Better access to information will reduce anxieties, enable patients/carers/staff to access services and better co-ordinate care. Information needs to be straight forward and accessible for our diverse population. We will make sure that staff have immediate access to key information, advice and support, regardless of the time of day. Pathways will be clearly defined and not hamper someone s ability to provide high quality care. Care Plan reviews need to be embedded and triggered at multiple points within the patient pathway. Review nursing workload and explore how increased face-to-face time might be achieved Sufficient Care Homes to meet the demand Sufficient hospice beds Night service Work towards a seven day face to face service for palliative care Explore bringing End of Life strategy in to BCF programme Agree governance links between WSIC and EoL Develop integrated service specifications from April 17 Link with IT integration work: National/London/NWL/Hillingdon Develop communication plan across health and social care Develop public services directory Benchmark Single Point of Access service Link with Primary Care coordination Define Care Plan review trigger points and ensure they are explicit in all relevant contracts Develop clear pathway of assessment or screening/low level support, for the bereaved Care Planning and Co-ordination Staff support, education and training Improve the use and effectiveness of Advance Care Plans Ensure patients care is co-ordinated so that they are aware of what is available to them and their carer, and supported to access these Provide ongoing training to health and social care providers Develop a skilled workforce that can support our ambitions for End of Life Care Advance Care Planning is a collaborative process to facilitate patient autonomy so that their future wishes can be carried out once they can no longer decide for themselves. It will also help families prepare for the death of a loved one, to resolve family conflict, and to help with bereavement. Effective use of Advance Care Plans will be used to put the patient and their family in the driving seat for their care. Effective care co-ordination is essential to enable patients to receive high quality care and support that is joined up and in line with their wishes. We will be providing ongoing training available to all relevant staff. These will be supported by our Macmillan GP who will work closely with individual teams. Hillingdon continuously strives to attract high quality staff that do the right things at the right moment to improve patient experience and outcomes. This requires a motivated, autonomous workforce that has access to high quality training and support. Increase access to CMC across health and social care Comprehensive, ongoing training on CMC, difficult conversations, do not resuscitate etc Embed periodic advance care plan audits Benchmark best practice models Assist the IT integration across health and social care systems Named care co-ordinator recorded on CMC Establish required nursing demands to meet existing and future need Benchmark Single Point of Access for End of Life Explore dedicated care co-ordination function for End of Life Links with new model of care for the elderly Ongoing training for all relevant health and social care staff Embed review process to monitor outcomes of training Ensure skill mix is proportional to identified need Monitor staff training written in to the quality schedule for all contracts Review effectiveness of Macmillan GP overseeing training programme Collect case stories and staff survey results for the EoL Forum Obtain regular feedback from carers (and Patient/Carer representation at key EoL Forum 18
Objective Strategic Focus Description Key Activities where appropriate and possible) patients about the quality of service they receive Develop services that recognise that good End of Life Care does not stop at the point of death and should include timely verification and certification of death (and referral to the coroner) and also care and on-going support (both emotional and practical) to families and carers. Collect/review provider led patient surveys Link with carers strategy align collection of feedback 19
Appendix 3 Engagement/Patient, Carer Voices Voices Date No of people They Said We did National National Voices Sept 16 Each person is seen as an individual Each person gets fair access to care Maximising comfort and wellbeing Care is coordinated All staff are prepared to care Each community is prepared to help Aligned our strategy to the six key ambitions National Survey of Bereaved People April 16 21,320 3 out of 4 bereaved people (75%) rate the overall quality of end of life care for their relative as outstanding, excellent or good; 1 out of 10 (10%) rated care as poor. Overall quality of care for females was rated significantly higher than males with 44% of respondents rating the care as outstanding or excellent compared with 39% for males. 7 out of 10 people (69%) rated hospital care as outstanding, excellent or good which is significantly lower compared with care homes (82%), hospice care (79%) or care at home (79%). Ratings of fair or poor quality of care are significantly higher for those living in the most deprived areas (29%) compared with the least deprived areas (22%). 1 out of 3 (33%) reported that the hospital services did not work well together with GP and other services outside the hospital. 3 out of 4 bereaved people (75%) agreed that the patient s nutritional needs were met in the last 2 days of life, 1 out of 8 (13%) disagreed that the patient had support to eat or receive nutrition. More than 3 out of 4 bereaved people (78%) agreed that the patient had support to drink or receive fluid in the last 2 days of life, almost 1 out of 8 (12%) disagreed that the patient had support to drink or receive fluid. More than 5 out of 6 bereaved people (86%) understood the information provided by health care professionals, but 1 out of 6 (16%) said they did not have time to ask questions to health care professionals. Almost 3 out of 4 (74%) respondents felt hospital was the right place Focus on building community services to support people in their preferred place of care and death Demand and Capacity review to reduce inequalities across the borough Single Point of Access to support staff and explore lead provider model to improve integration across professional boundaries Focus on early identification to understand patient preferences 20
for the patient to die, despite only 3% of all respondents stating patients wanted to die in hospital. Carer s UK: State of Caring 2015 2015 4,500 82% of carers report that caring has had a negative impact on their health 74% of carers find it difficult to get a good night s sleep 62% of those carers who are struggling to make ends meet saying they are cutting back on seeing friends or family to save money 53% of respondents say that they are concerned about the impact of caring on their relationship with the person they care for 68% have used their annual leave to care 30% said giving up work or retiring early was because there are no suitable care services and 22% said care services are too expensive Realise that carers do the job out of love and devotion but need support to do this Care Quality Commission May 16 A different ending: End of life care review People from certain groups in society are experiencing poorer quality care at the end of their lives Commissioners and providers have a duty to consider the needs of a range of equality groups when carrying out their day-to-day work Health and care staff are not always having conversations with people early enough about their end of life care Everyone needs the same access to high quality, personalised care at the end of their lives NWL Inner NWL Tri-borough JSNA Jan 16 Engaged with the BME Forum that fed in to the Tri-borough end of life JSNA where the following priority areas have been identified: Identification of people approaching the end of life Discussions as the end of life approaches Assessment, care planning and review Coordination of Care Delivery of high quality services in different settings Care in the last days of life Care After Death Support and Information for Carers and Families Spiritual Care Services Implementing a Joint End of Life Strategy with the local authority Aligning the strategy with the Better Care Fund that will implement pooled budgets and explore the feasibility of removing the potential charge for people diagnosed as likely to have only having six months to live Aligning with Hillingdon Carers Strategy Investing in care co-ordination to include accessing support for carers We are establishing a representative user group to feed in to ongoing end of life care development Engaging with various group to better understand gaps and issues unique to them Building our ongoing analysis looking at inequalities due to different clinical diagnoses. Priorities have been compared against Hillingdon local strategy to identify other areas of focus. 21
Harrow End of Life Single Point of Access Evaluation Report Hillingdon Nov 15 22 Evaluation included a service user questionnaire: I feel that the SPA has responded quickly to my needs Strongly Agree 40% Agree 53% Neither agree or disagree 7% Disagree 0% Strongly disagree 0% I feel the SPA has co-ordinated my care well Strongly Agree 36% Agree 36% Neither agree or disagree 28% Disagree 0% Strongly disagree 0% I know to call the SPA when I need some help Strongly Agree 52% Agree 38% Neither agree or disagree 10% Disagree 0% Strongly disagree 0% I feel that the SPA has supported me in receiving care in my own home Strongly Agree 19% Agree 44% Neither agree or disagree 37% Disagree 0% Strongly disagree 0% Overall I am very happy with the care received from the SPA Strongly Agree 31% Agree 50% Neither agree or disagree 19% Disagree 0% Strongly disagree 0% Visits to Greenwich, Colchester and Harrow to review Single Point of Access. Exploring implementation of best practice as reflected in Hillingdon EoL Strategy. 22
GP National Survey Jan 16 4,000 Below National average for health professionals calling back and visiting patients at their home Have a written care plan 92% said no Had help putting plan together 72% yes Had enough support in last 6mths to help manage LTC: a) Yes 33% b) Yes, to some extent 26% c) No 16% d) Don t need it 22% e) Don t know 3% Cancer Information Centre Volunteers 13.04.16 5 We rely on our GP or hospital consultant to help us navigate, my GP was not even aware of my condition No-one keeps you informed Who do you contact when there s a problem? Knowing what support there is and how to access it Some people are good at difficult conversations, others are not. Should not be defined by role but more about those with rapport In the old days, your GP and nurse knew you well DNs have too many patients to manage Should be building on existing workforce Continuity is more important than everything else every day my sister had a different carer, when that changed, she was much happier and she improved No-one told me about Hillingdon Carers when my father was ill, it would have been so helpful!!! People just want someone you can trust, who can come and sit with you, spend time with you DNs have too much paperwork Maybe they need admin support so they can spend time with people too much bureaucracy, filling in forms/assessments etc Michael Sobell House May 2016 8 Need one point of contact, lots going on with lots of info, who provides what? When I left Watford General, the nurse stayed in touch with me and is there at the end of the phone. My GP isn t District Nurse will ring ahead of a visit and ask if I m okay, if I say yes, they say they ll move my visit back a further two weeks. Feel like I m a tick box, I d like face-to-face and some company Aligning with Hillingdon Older People s strategy Exploring single point of access for advice information Exploring co-ordination service to support EoL Made sure the strategy highlights the pressures on District Nursing and the need for patients to have quality face-toface contact Commitment to review nursing workload and explore how increased face-to-face time might be achieved Note the view to expand/integrate existing services Developing business case for a Single Point of Access Incentivising GPs around care planning and care plan reviews Working closely with District Nursing to 23
I don t have a District Nurse or any other support, the day centre helps Large amount of people managing on their own in the community We try and help at the day centre but often go round in circles trying to get equipment etc Need a single point of access I prefer to go to hospital rather than the district nurse coming and not knowing what to do when they re there Loneliness is a big problem Practice Nurse will sometimes get in touch which is nice Not enough focus on what the person wants in terms of emotional support. Clinicians just see symptom control. End of Life Forum 20 Front line staff: Nurses, consultants, third sector providers feeding back their learning following extensive patient/carer and family feedback. Key issues noted are around: Access to information, help and support Identification of people at EoL Co-ordination of care IT integration Staff support and training Task and Finish Groups 8 Smaller Task and Finish groups were set up to drill down and shape the strategy collaboratively. Dates: 05-11-15 03-12-15 07-01-16 04-02-16 improve end of life care delivery Developing business case to include further community support We have identified five key strategic objectives that address the issues identified by the forum. These have been aligned with the National Ambitions framework and further secures engagement from our providers by listening and responding to the day-to-day issues that impact on good quality patient care. The T&F groups were established to utilise the insights of key providers to further develop the strategy. Providers: Acute Specialist Palliative Care (Consultant and CNS) Community Nursing: CNS, District Nursing Harlington Hospice Social Services MacMillan GP Case Study: Meeting between wife/carer, Dr Ian Goodman, Dr Khuldir Johal and Ceri Jacob 4 th March 2016 One single team for patients who are dying so that patient knows who they are and who is around them in the last stages of their life Developing business case for a Single Point of Access 24