A Strategy for End of Life Care across Northamptonshire

Transcription

1 A Strategy for End of Life Care across Northamptonshire Date 18 th September, 2014 Version V0.7 Status Draft

2 Version Control Version Author(s) Status Issue Date Reason for Change 0.1 Richard Bailey Draft 18/05/ Richard Bailey / Paul Hayes 0.3 Richard Bailey / Paul Hayes Draft 06/06/14 Peer review changes Draft 13/06/14 Peer review changes 0.4 Paul Hayes Draft Update following workshop engagement events Paul Hayes Draft Reordering of strategy document 0.42 Paul Hayes Draft 29/7/14 Inclusion of workshop output. (Principles / enablers and deliverables) 0.5 Paul Hayes Draft 31/8/14 Extensive peer review following issue of draft to Healthier Northamptonshire project team 0.6 Paul Hayes / Richard Bailey 0.7 Paul Hayes / Richard Bailey Draft 3/9/14 Updated following receipt of section 5.2 from Richard Bailey Draft 18/9/14 Review with Richard Bailey ahead of issuance of draft strategy 2 September, 2014

3 Distribution for Comment / Governance: The draft strategy document will be distributed for comment. A full list distribution list can be found in Appendix 1. The draft strategy should be subject to the widest possible discussion. Please therefore pass the document onto any other relevant or interested party who are not on the distribution list. It has been agreed that members of the Healthier Northamptonshire (HN) end of life workstream programme team will distribute the document to agencies / organisations and collate comments. The timescales for comments and final agreement will be: Date Action 18 th September, 2014 Document distributed 18 th September to 31 st October, 2014 Document reviewed by organisations. The Healthier Northamptonshire (HN) end of life programme workstream has decided to allow 6 weeks for comment in order that organisations can discuss the document at board level, if required. The programme team wish to give stakeholders time and opportunity to review. Feedback on the document can be at an individual or organisational level. While the draft strategy has been a joint production between member of the Healthier Northamptonshire (HN) project team all feedback should be directed to paul.hayes@nhft.nhs.co.uk October to November, 2014 Comments to be reviewed by the HN team. Any differences in views and opinions will be discussed. Meetings will be parties to agree / resolve. During this time the draft strategy will be amended to reflect feedback. November 2014 The final strategy will be issued for approval at board meetings including : Healthier Northamptonshire Nene and Corby Clinical Commissioning Groups NHFT Executive Board The target date for signoff is 31 st December, September, 2014

4 GLOSSARY of Terms The terms end of life, generalist palliative care and specialist palliative care are often used interchangeably. In practice, the meaning of these terms is different. The section below sets out the definition of these common terms used in this strategy: End of Life People are 'approaching the end of life' when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with: advanced, progressive, incurable conditions general frailty and coexisting conditions that mean they are expected to die within 12 months existing conditions if they are at risk of dying from a sudden acute crisis in their condition Life-threatening acute conditions caused by sudden catastrophic events 1. Generalist Palliative Care Services in all sectors providing day-to-day care to patients with advanced disease and their carers, designed to alleviate symptoms and concerns, but not expected to cure the disease. 2 Hospice care A hospice is not just a building; it is a way of caring for people. Hospice care aims to improve the lives of people who have a life-limiting or terminal illness, helping them to live well before they die. Hospice care not only takes care of people's physical needs, but looks after their emotional, spiritual and social needs as well. It also supports carers, family members and close friends, both during a person's illness and during bereavement. 3 Palliative care Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual Adapted from: Improving Supportive and Palliative Care for Adults with Cancer, Source: World Health Organisation September, 2014

5 Specialist Palliative Care Specialist palliative care is the active, total care of patients with progressive, advanced disease and their families. Care is provided by a multi-professional team who have undergone recognised specialist palliative care training. The aim of the care is to provide physical, psychological, social and spiritual support. 5 Supportive care This is care which helps people with cancer and other life-threatening illnesses and their families to cope with the disease and its treatment throughout the patient pathway. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. 6 Advance Care Planning The difference between advance care planning and care planning is that the process of ACP can only involve someone with capacity to decide and usually takes place in the context of an anticipated deterioration in the individual s condition in the future, with attendant loss of capacity to make decisions and/or the ability to communicate wishes to others. There are three elements to the Advance Care Plan. The advance care plan is offered to all patients who may or may not choose to create this plan as it is a voluntary process. The plan itself is a process which is subject to review. Under the terms of the Mental Capacity Act 2005 formalised outcomes of advance care planning might include one or more of the following: a) A statement of wishes and preferences (Advance statements). This is not legally a legally element of the plan. It captures the wishes of the patient and may include preferred place of care or death. The patient may change their mind regarding these preferences. There is no set review date but these plans should be reviewed regularly. b) Advance decision to refuse treatment (ADRT). This is legally binding and patients have to be over 18 to make an ADRT. It is also prescriptive how it is written. In Northamptonshire, an Advance Care Planning booklet has been produced by Northamptonshire Healthcare Foundation Trust (NHFT), Advance Care Plan : Planning for your Futures, (see appendix 2) c) The booklet states that the patient must make a written statement that says even if life is at risk. This section can include wishes about DNACPR, ventilation and feeding wishes. This part of the form should be completed in-conjunction with a clinician. d) Lasting power of attorney (LPA). To complete this part of the plan a patient must go through the office of public guardianship. A certificate is required before lasting power of attorney is granted. Power of attorney may include a third party making decisions over health and wellbeing or finance or both. 7 5 Source: Tebbit, National Council for Palliative Care, Adapted from: Improving Supportive and Palliative Care for Adults with Cancer National end of life care programme: Capacity, care planning and advanced care planning in life limiting illness, (National End of Life Care Programme, February 2012) 5 September, 2014

6 Social Marketing Social marketing is an approach used to develop activities aimed at changing or maintaining people s behaviour for the benefit of individuals and society as a whole. Combining ideas from commercial marketing and the social sciences, social marketing is a proven tool for influencing behaviour in a sustainable and cost-effective way September, 2014

7 1. Executive Summary Within Northamptonshire there are existing, high quality, end of life services. However, demand for, and expectation of, end of life services will grow and this strategy sets out how to meet these challenges. This forms one of the work-streams arising from Healthier Northamptonshire. Research confirms that patients wishing to die at home, hospice or care home accounts for 92% of patients wishes, with home accounting for 66% of this figure 9. The reality is that currently around 51% of patients are dying in hospital and 27% of patients dying at home for Corby. The percentage for deaths at home drops to 21% for Nene patients 10. By 2019 the Office for National Statistics estimates that there will be an additional 35,000 adults in Northamptonshire 11. To provide some perspective, this is equivalent to the current population of Rushden and Higham Ferrers combined. The vision for end of life care is Compassionate care will be provided in a consistent, coordinated way by providers who are competent and confident in delivering high quality care; Patients will be enabled and supported to live and die in a place their choice. The principles supporting this strategy for end of life services for adults are: To be holistic (i.e. meeting physical and psychological needs) and patient centred with coordinated care; To include support for carers both during the period at the end of life and after death; In the main requiring generalist palliative care support augmented by specialist palliative care team support where necessary; and Governed by one set of standards and delivered through one set of policies, pathways and protocols but reflect the differing needs of patients. Ultimately this is to achieve a reduction of deaths in hospital to 40% of all deaths by There are seven key areas to deliver this strategy: 9 Source : Local preferences and place of death in regions within England 2010, Cicilly International, Higginson I 10 Public Health England (PHE) published End of Life CCG Profiles by CCG for on 28th April September, 2014

8 1) Improved coordination of care; 2) Introduction of Electronic Palliative Care Coordination system (EPaCCS); 3) Services that are centred on the patient and not the provider; 4) Increased education and skills training for clinicians and lay carers, and the introduction of social marketing initiatives, to effect a change of culture and attitude towards the subject of end of life care; 5) Having sufficient specialist palliative care capacity in the right location; 6) The early identification of a patient on the end of life pathway and appropriate care planning at all stages on that pathway; and 7) The instigation of research into the effect of changes made. The whole systems approach to delivery of care will mean a partnership approach from all commissioners, providers and stakeholders. It should be recognised that there is interdependency between delivery of all of the elements of this strategy. The delivery of the above projects is designed to achieve the following outcomes. There will be: Clearly defined pathways that are agreed and implemented across all providers. These pathways will have clear roles and responsibilities for each provider. Through the coordination hub and EPaCCS we will achieve the right intervention at the right time by the right provider ; An increase in the percentage of patients supported to die in a place of their choice; An increase in the percentage of time that a patient remained in their preferred place of care will be increase; Fewer avoidable admissions to acute hospitals; An increase in the percentage of patients that have care plans that record the patients and their carers wishes regarding their care at end of life providing the framework for improved quality for the patient and carers; Evidence that patients are being offered the opportunity to complete ACP (and to be able to support completion of the ACP; Evidence of health and social care workforce within Northamptonshire engaging in high quality education and professional development with the Practice Development Team; Evidence of care homes completing the Gold Standards Framework foundation level; Evidence that all providers have a suitable end of life care plan in place and is consistently being implemented for patients under their care and that they achieve at least a minimum level of quality. (Monitored through formal care 8 September, 2014

9 Quality Commissioner visits, together with a partnership approach with other providers); Demonstrable improvement in every outcome measure; and Defined outcomes for commissioners for future re-commissioning of services. In engaging with partners and stakeholders to assist in the production of this strategy there have been a number of comments made regarding the fact that we have been here before and there was a failure to agree an end of life strategy previously. In doing this piece of work the focus is turning intention into reality. In delivering this strategy the End of Life workstream for Healthier Northamptonshire will shape services that can achieve the good death that the adult population in Northamptonshire would expect and deserve. 9 September, 2014

10 2. Background One chance to get it right (Leadership Alliance for the Care of Dying People, June 2014) was the latest publication regarding the replacement for the Liverpool Care Pathway. While the document was specifically for the last few days and hours of life the title of the document sums up the challenges in providing end of life care from diagnosis to death. Within Northamptonshire there is some excellent End of Life care (both specialist and generalist) provided through a wide variety of providers. Services include community nursing teams, the hospices (Cynthia Spencer in Northampton, Cransley in Kettering and Lakelands in Corby), in-patients unit at Dantre Hospital and the two district general acute hospitals (Northampton General Hospital and Kettering General Hospital), Primecare and Continuing Healthcare. However, it is recognised demand and expectation for end of life care is going to grow and there are a number of existing challenges locally: Too many patients are still dying inappropriately in hospital. Between 2010 and 2012 death in hospital accounted for 53% of Corby Clinical Commissioning Group patients and 52% of Nene Clinical Commissioning Group patients. 12 This issue and the length of time that a patient spends in hospital during their final year add to the local urgent care issues in Northamptonshire. Reducing the number of patients admitted whilst near the end of life would increase the number who can die at home. It would allow the hospitals to focus more on patients with curative needs. It will also enable care and resources to support the achievement of patients of patients wishes and preferences. The outcome of too many patients dying in hospital is that patients do not achieve being cared for in their preferred place of care or achieve their preferred place of death. National research reveals that around 66% of patients wish to die at home, 24% in hospices, 2% in care homes and only 4% in hospital. 13 There are many and complex range of services for patients and carers, delivered by multiple agencies in Northamptonshire. This leads to a duplication of services (and occasionally) an omission of services. We do not have an effective single point of coordination within county for providers to ensure that the right intervention is made by the right provider at the right time. 12 Public Health England (PHE) published End of Life CCG Profiles by CCG for on 28th April Source : Local preferences and place of death in regions within England 2010, Cicilly International, Higginson I 10 September, 2014

11 There is no common care plan record for providers to access and update. This issue adds to the lack of coordination and patients being treated in inappropriate places according to their wishes. The existing pathway is cancer-centric. While care is provided for patients with different conditions and co-morbidities there is a recognition that different pathways are required, recognising different condition trajectories towards death. While not unique to Northamptonshire, there are issues associated with our culture and attitudes to dying. Patients are not always comfortable when discussing their own death and therefore do not plan for their care and their care wishes as they should. This can lead to poor experiences of care for patients and carers, disjointed services and avoidable hospital admissions. The situation is compounded when professionals caring for the patient are not comfortable themselves or competent when discussing end of life care with patients and their carers. We need to address and change cultural attitudes towards death and dying through social marketing to make discussion and planning for end of life care part of health and social care. Commissioned by Dying Matters, NatCen Social Research interviewed 2,145 adults in Britain on their attitudes to dying as part of the 2012 British Social Attitudes survey. The survey found: Although 70% of the public say they are comfortable talking about death, most haven t discussed their end of life wishes or put plans in place Only 35% of respondents said they have a will. This is down from 39% in Economic pressures is a possible cause of this decline Fewer than a third (28%) have registered as an organ donor or have a donor card although the number of organ donations after death has risen by 50% since More than 1,000 people on the transplant waiting list die each year (NHS Blood and Transplant figures) Only 11% have written their funeral wishes or made a funeral plan 5% say they have set out how they would want to be cared for at the end of life if they couldn't make decisions themselves Source: British Social Attitudes survey published May September, 2014

12 3. Scope 3.1 In considering the issues detailed in section 2 above, Healthier Northamptonshire has made End of Life care one of the priority workstreams for delivery. Initially, there were two priorities, the need to improve coordination, possibly through a Lead Provider model and introduction of the Electronic Palliative Care Coordination System (EPaCCS). Both of these projects will be progressed. 3.2 However, it was also recognised that a strategy for delivery of adult services (over 18) is needed that would deliver the outcomes that the population of Northamptonshire deserve including: Creating a shift in the culture and attitudes towards death to one where patients are comfortable in discussing their choices and preferences for what a good death would mean for them through social marketing; Patients are identified at the earliest opportunity as being on the end of life pathway to enable healthcare and social care professionals to devise care plans in-conjunction with those patients and their carers needs; Patients supported in their preferred place of care; Patient centred care that is planned and coordinated; Care provided by healthcare and social care professionals and lay people who are informed, confident and competent in their delivery; Patients and their carers need access to care 24/7. Services need to be wrapped around the patient not tailored to providers; and Patients dying in a place of their choice, where medically and socially possible, and given the opportunity to change their choices as death approaches. 3.3 Ahead of the Healthier Northamptonshire programme and a wider end of life strategy, the trustees from Cynthia Spencer and Cransley hospice have been working with Northamptonshire Healthcare Foundation Trust (NHFT) on the production of a strategy for Specialist Palliative Care (SPC). (The SPC strategy is attached as appendix 3). That strategy will form part of this overall strategy for delivery. It should be noted that some of the initiatives identified as part of the SPC strategy are already being turned into projects for delivery starting with the intention of the hospice trustees investing in community nursing teams to provide additional Hospice at Home and Specialist Palliative nursing care. The specialist palliative care strategy has been ratified by the Nene and Corby Clinical Commissioning Groups to enable progress on these projects to continue. 12 September, 2014

13 3.4 There is work on-going with frail and elderly work that has parallels with End of Life Care. There is the potential for joint work to develop: Care co-ordination; and Patient database. The opportunities to bring aspects of these programmes together should be taken. 13 September, 2014

14 4. The National Context The following sections are taken from Priorities for End of Life Care as Set out in the End of Life Care Strategy (Department of Health, 2008) 15 The National End of Life Strategy was published in 2008 by the Department of Health. This strategy document set out an extensive plan of work. It also set out expectations of end of life care standards. Each year around 500,000 people die in England. We know that although some people receive excellent care at the end of life, many do not. One of the fundamental problems is that services are not always joined up and as a result communication between staff and agencies can break down. From surveys of the general public we know that, given the opportunity and right support, most people would prefer to die at home. In practice, only a minority manage to do so. Many people die in an acute hospital, which is not their preferred place of care. Although every individual may have a different idea about what would, for them, constitute a good death, for many this would involve: o Being treated as an individual, with dignity and respect; o Being without pain and other symptoms; o Being in familiar surroundings; and o Being in the company of close family and/or friends. The whole systems and pathway approach discussed in the DH strategy includes: o Identification of people approaching the end of life and initiating discussions about preferences for end of life care; o Care planning: assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly; o Coordination of care; o Delivery of high quality services in all locations; o Management of the last days of life; September, 2014

15 o Care after death; and o Support for carers, both during a person s illness and after their death. The National End of Life Care Strategy listed a number of key areas addressed by the Northamptonshire strategy. (See section 5) for example: o Raising the profile of end of life care; o Strategic commissioning integrated approaches across health and social care. All providers are to be involved in the commissioning process; o Identify people approaching end of life; o Coordination of care; o Rapid access to care 24/7; o Delivery of coordinated high quality services in all locations; o Care in last days of life and after death; o Involving and supporting carers; o Quality education and training and continuing professional development; and o Measurement and research. 15 September, 2014

16 5. Local Challenges for Northamptonshire 5.1. Patient Expectation s and Current Realities The development of health markets and greater levels of choice is generating more of a consumer attitude amongst patients. This is a process which has started but as people become more aware of the choices faced, they will express a preference in many areas including the end of life such as where they wish to die. Whilst meeting expectation provides challenges, it also offers the opportunity to involve individuals and communities in service design and service delivery. Public Health England (PHE) published End of Life CCG Profiles by CCG for on 28 th April The profiles included: Place of Death; Underlying Cause of Death; Underlying Cause of Death by Place of Death; and Cause of Death (any mention) by Place of Death. The profiles for NHS Nene CCG and NHS Corby CCG have been extracted and are attached as two separate addendums (see appendix 4) September, 2014

17 Corby CCG* Hospital Home Care Home (Nursing or Residential) Hospice No % No % No % No % Underlying Cause of Death by Place of Death % % % % Place of death by underlying condition Cancer % % % % Cardiovascular Disease % % % % Respiratory Disease % % % Other Cause % % % % * Note that deaths in 'other' settings are not included in these figures (therefore thy do not add up to 100%) Nene CCG* Hospital Home Care Home (Nursing or Residential) Hospice No % No % No % No % Underlying Cause of Death by Place of Death % % % % Place of death by underlying condition Cancer % % % % Cardiovascular Disease % % % % Respiratory Disease % % % % Other Cause % % % % * Note that deaths in 'other' settings are not included in these figures (therefore thy do not add up to 100%) Source: Public Health England (PHE) published End of Life CCG Profiles by CCG for on 28 th April 2014 Half of all deaths for Nene CCG patients occur in hospital and just over 1 in 5 deaths occur at home (which is slightly lower than the average for England); and Half of all deaths for Corby CCG patients occur in hospital and over 1 in 4 deaths occur at home (which is higher than the average for England). The tables above compare with national surveys where around 70% of people say they would prefer to die at home or nursing / care homes and a further 24% in hospice. One other notable point is that only 38% of cancer deaths occur in hospital (Nene) which suggests some significant progress with this patient group. However 57% 17 September, 2014

18 (Nene) and 60% (Corby) of cardiovascular disease deaths occur in hospital and 61% (Nene) and 65% (Corby) of respiratory disease deaths occur in hospital. It is recognised clinically that trajectories towards death differ with cardiovascular disease, respiratory conditions, heart failure and other conditions and therefore our local services need to be able to respond differently to those of cancer services Growth in Population Age Range Northants Population % Annual Growth Northants Pop % Annual Growth Northants England 2020 Northants England <15 129, , % 1.20% 150, % 1.40% , , % 0.20% 274, % 0.20% , , % 0.60% 200, % 0.70% ,873 71, % 3.40% 77, % 1.00% ,203 37, % 1.60% 45, % 2.30% ,214 15, % 3.10% 18, % 3.40% All Ages 693, , % 0.90% 767, % 0.80% Source: NHS Commissioning Board Outcomes benchmarking support packs: LA level - Northamptonshire Local Authority The overall population is growing by a rate of over 1% per annum whereas the rate of population growth for England is less than 1%. The growth rate of 65+ population is growing much faster than the younger ages and is a much higher rate than the average for England: o Between the growth in Northamptonshire for this age range is in excess of 4% per annum; and o Between the growth in Northamptonshire for this age range is in excess of 3% per annum. As the population ages, there will be more people diagnosed with cancers and surviving for a longer period with longer term conditions, such as heart failure and COPD. End of Life Care is needed for adult all age ranges but demand for service is greatest in this age range and that is a major challenge September, 2014

19 5.3. The Financing of End of Life Care Whilst demand for end of life care will rise, and expectation will grow, there will not be a commensurate growth in NHS funding. This strategy is set against a time of austerity when the best value for money is required. Part of end of life care includes specialist palliative care, which in itself is part funded through hospice charities. This is a valuable source of funding, and one which some people can gain succour. This funding is independent of local health commissioning but the CCG s work in partnership with the charity trustees. 19 September, 2014

20 6. Vision, Aims and Objectives 6.1. The Vision The proposed vision for End of Life care in Northamptonshire is: Compassionate care will be provided in a consistent, coordinated way by providers who are competent and confident in delivering high quality care; Patients will be enabled and supported to live and die in a place their choice Commissioning for End of Life Services Principles End of Life services for adults will: Be holistic (i.e. meeting physical and psychological needs) and patient centred with care co-ordinated for those patients on the end of life pathway and likely to die within the next 12 months and allow them to choose, and change their choice as to where they will die; Include support for carers both during the period at the end of life and after death; In the main require generalist palliative care support augmented by specialist palliative care team support where necessary; Be governed by one set of standards and delivered through one set of policies, pathways and protocols but reflect the differing needs of patients arising from disease (cancer and non-cancer) and co-morbidities; and Achieve a reduction of deaths in hospital to 40% of all deaths by Commissioning Intentions There will be a co-ordinating hub and database (EPaCCS), closely aligned/ integrated with the frail elderly hub and database by 2015; To ensure that duplication of services and omissions are avoided in the provision of end of life services, a thorough service review will be completed by May This will include: o Resolving the difficulties in establishing responsibilities for transport of end of life patients; o The relationship between various providers of end of life generalist care; o Service provision between the hospices in Northampton, Kettering and Corby; and o Delivery of specialist palliative care. 20 September, 2014

21 The Specialist Palliative Care Strategy has previously been set out and endorsed. The strategy has many aspects including: o An enabling requirement for the specialist palliative care strategy to have in place the early delivery of EPaCCS and care coordination; and o The expansion of hospice and specialist palliative care through fund raising with the initial focus on supporting end of life care through hospice at home and the support for care homes. The culture and approach to end of life in Northamptonshire can be changed and the opportunities that will be exploited are: o Advanced care planning; o Social marketing and engagement with the wider public; and o Supporting hospices in their engagement with the public including volunteering and fund-raising. There will be a consistent approach from staff supporting people at the end of life which will require a pan-agency approach to the development of o Standards; o clinical pathways; and o training and development. This will cover primary care ( Gold and Silver standards), secondary care, community services, hospice care and care homes. To take forward the work on the culture and development of standards et al a cross-agency board for the development of end of life services will be established of providers and commissioners. The implementation of this strategy requires a paradigm shift from management of end of life in acute hospitals to community for all health and social care professionals and this will involve the avoidance of admission to hospital as well as the swift discharge from hospital for patients at the end of life. A study that examined the use of health and social care services for over 73,000 people in the last 12 months of their lives found the total social care and hospital costs to be 10,130 per person in the final year of life. With over 465,000 deaths nationally in England in 2008 this represents 4.7bn in final-year hospital and social care costs. (Does not include primary care, community care and prescribing costs) September, 2014

22 7. The Strategy for Northamptonshire Major Deliverables 7.1 In identifying the deliverables for the end of life strategy a number of workshops were held where commissioners, clinicians, medics, service managers, senior managers, all providers of end of life care and healthwatch were engaged. At these workshops attendees were asked to identify principles and enablers which would drive the strategy. A full list of all the points raised at the workshops can be found in appendix 5. While each of the workshops had different delegates and the discussion had a slightly different emphasis e.g. the patient, the provider, specialist palliative care, a number of common issues emerged: Lack of coordinated services; Diagnosis of end of life needs to happen as early as possible; Patient care plans need to be in place for all patients; No single view of the patient care plans for providers; Too many patients are admitted to the two acute hospitals and die in those hospitals; Services are not always able to provide care in the patients preferred place; Poor quality of care can be provided. This is not wilful or neglectful care but through lack of skills, knowledge and confidence to care for patients who are at the end of their life; This No single view of the patient care plans for providers; and Good care is provided locally but there is a need in Northamptonshire to promote issues that are raised on a national basis. Through these issues a number of deliverables have been identified. These deliverables address the issues identified as the background to this strategy and those subsequently identified within the workshops. They will also enable Northamptonshire to meet the requirements set out in the Department of Health strategy, 2008 (see section 3) to support patients to achieve a good death. 22 September, 2014

23 Deliverable 1: We will deliver a single coordination hub for end of life care services. This hub will be used by all providers of end of life care services in the county. End of life is defined as the last 12 months of life. Identification of patients that are in the last 12 months of life as earlier as possible and facilitate care planning and coordination of a patient centred pathway through the hub. Deliverable 2: We will deliver an Electronic Palliative Care Coordination System (EPaCCS) for Northamptonshire. EPaCCS provides an electronic version of care plan and advance care plan. (An implementation guide to EPaCCS published by Public Health England can be found in Appendix 6). EPaCCS will be used by all providers of end of life services in the county. An economic evaluation found evidence implementing Electronic Palliative Care Co-ordination Systems (EPaCCS) affected the place of death, with an extra 90 deaths occurring in the usual place of residence per 200,000 population each year above the underlying increase in rates experienced across England. Source: Economic Evaluation of the Electronic Palliative Care Co-ordination System (EPaCCS) Early Implementer Sites. NHS Improving Quality. May Deliverable 3: We will identify a patient who is on the end of life pathway and ensure that appropriate care planning is in place for the patient. We will seek to ensure that providers from Kettering General Hospital (KGH), Northampton General Hospital (NGH) and Northamptonshire Healthcare Foundation Trust (NHFT) use the prognostic tool modified by NHFT consultants and tested within KGH to identify patients on the end of life pathway and signpost them for September, 2014

24 initial care planning with Primary Care or District Nursing Planning will include: Care planning; Advance care planning (when the patient agrees); and Care planning for the last days and hours. This will include ensuring that we take account of noncancer condition pathways including organ failure and mental / physical frailty. It will also include ensuring that we have sufficient community teams to meet the requirements to enable the patient to remain in their preferred place of care (around 66% prefer home, 24% hospices, 2% care home) 20 Hospice patients who had advance care planning (ACP) spent significantly less time in hospital. The average time spent in hospital in the last year of life was 18.1 days for people with ACP compared to 26.5 days for those without. Source: The impact of advance care planning of place of death, a hospice retrospective cohort study Abel J, Pring A, Rich A et al BMJ Support Palliat Care doi: /bmjspcare full#T4 21 Deliverable 4: We will deliver a patient centred service (not provider led) that has a clear pathway of provider delivery. Initial thought from those attending the workshops are that the delivery of this will include: Ensure there is access to care 24 hours a day / 7 days a week for patients and carers; We aim to ensure that a single telephone number can 20 Source : Local preferences and place of death in regions within England 2010, Cicilly International, Higginson I September, 2014

25 be provided to access end of life services; We will formally establish the role of the key worker 22. This person will not necessarily be responsible for providing all interventions but will signpost the patients to other professionals / services / agencies where required. The keyworker will be supported by commissioners to work across organisational barriers 23 ; Overcome existing organisational barriers which appear to be currently in place for providers to work together. An end of life network will be established in Northamptonshire. This will meet every 6 months and be inclusive to include all agencies involved in care including carers; We will create generalist and end of life care step up / step down beds (stepping up from home and stepping down from acute hospitals); We will increase psychological support through strategic delivery points: o Pre death to the patient / carer / family o Post death to the patient / family We will ensure there is an appropriate rapid response team for patients and carers who are in a crisis; We will ensure that care packages are in place to facilitate discharge from acute hospital, where required; We will recognise that other conditions such as respiratory diseases and heart failure are often life limiting and have a different trajectory to death than cancer. We will aim to make end of life care less cancer centric; We will work with Lakelands Day Hospice to ensure that the model of care provided in Corby is equitable across the county and investigate the ways in which provision of day hospices can be used to support patients; We will ensure that carers are supported to enable patients to be kept at home; and Ensure that we have the appropriate technology to truly enable mobile / community working =&esrc=s&sa=u&ei=dafou- LmB8SL7AbFj4GQDA&ved=0CCUQFjAD&usg=AFQjCNH8WQGwIUXRBUOFlwCkzeZYuyRorQ 23 The National Institute for Health and Clinical Excellence (2004) 25 September, 2014

26 Deliverable 5: We will ensure that any clinicians (clinical groups include general practitioners, Physiotherapists, District Nurses and secondary care consultants), agencies (agencies include social care, nursing homes and the voluntary sector) or carers who treat or manage patients are provided with the education, skills and knowledge to enable to do so with confidence and competence. To achieve this we will enhance the commissioning of the Practice Development Team within NHFT. Within this element of the strategy we will address some of the cultural issues surrounding death and dying, already described. In effect, we will create greater demand for education and skills training from clinicians and patients / carers by enabling them to discuss end of life. Training and education are necessary to ensure the provision of high-quality care in different settings. Such education is reportedly needed in a range of aspects of endof-life care, including the identification of patients needs, communication skills, and the physical management of patients nearing the end of their lives. (Implementing the End of Life Care Strategy: Lessons for Good Practice (Kings Fund, 2010) 24 Deliverable 6: We will deliver Specialist Palliative care to all of those patients who require it. This initiative will be known as hospice without walls. Included in this deliverable will be the requirement to: Ensure that we have sufficient community teams to meet the requirements to enable the patient to remain in their preferred place of care and death; Defining the role of the hospice but recognising that it 24 menting-end-of-life-care-rachael-addicott-shilpa-ross-kings-fund- October2010_0.pdf&rct=j&frm=1&q=&esrc=s&sa=U&ei=rlTXU8OBLsfK0QWD9IHICg&ved=0CEoQFjAI&usg=AF QjCNEaYulEHAmoXUolxqCCcWVppdSrWA 26 September, 2014

27 needs to include Specialist Palliative Care and Holistic End of Life Care; and We need to ensure that we have sufficient in-patient beds at the two hospices. Currently there are 25 beds across Cransley and Cynthia Spencer Hospices (Based on Northamptonshire s current adult population 26 beds are required for cancer related specialist palliative care. 25 In addition to this, 15 beds are currently required for non-cancer specialist palliative care alone). 26 Deliverable 7: We will commission research to be conducted into the effect of the changes implemented on end of life care in Northamptonshire. 7.2 It is recognised that despite enhancing end of life services in Northamptonshire some patients will still slip through the net. However, the delivery of the above projects is designed to achieve the following outcomes: Clearly defined pathways that are agreed and implemented across all providers. These pathways will have clear roles and responsibilities for each provider. Through the coordination hub and EPaCCS the right intervention at the right time by the right provider will be achieved; An increase in the percentage of patients supported to die in a place of their choice; An increase in the percentage of time that a patient remained in their preferred place of care will be increase; Fewer avoidable admissions to acute hospitals; An increase in the percentage of patients that have care plans that record the patients and their carers wishes regarding their care at end of life providing the framework for improved quality for the patient and carers; Evidence that patients are being offered the opportunity to complete ACP (and to be able to support completion of the ACP; Evidence of health and social care workforce within Northamptonshire engaging in high quality education and professional development with the Practice Development Team; 25 National Council for Hospice and Specialist Palliative Care Services (1999) showed that the average provision of Specialist Palliative Care beds was 52/53 beds per million populations 26 Franks et al (2000) suggested the need of non-cancer patients for Specialist Palliative Care beds were at minimum 50% of the needs of cancer patients. i.e. 26 beds per million. 27 September, 2014

28 Evidence of care homes completing the Gold Standards Framework foundation level; Evidence that all providers have a suitable end of life care plan in place and is consistently being implemented for patients under their care and that they achieve at least a minimum level of quality. (Monitored through formal care Quality Commissioner visits, together with a partnership approach with other providers); Demonstrable improvement in every outcome measure; and Defined outcomes for commissioners for future re-commissioning of services. 28 September, 2014

29 8. How will the strategy be delivered? The deliverables outlined in this strategy will be subject to appropriate business case development which will require the support of commissioners and other key stakeholders. A number of these deliverables can be developed in parallel. Turning to the commissioning intentions in section 5.2.2, a programme approach will be adopted with each of the deliverables as a workstream. The programme will have a Board consisting of the following members: Senior Responsible Officer; Programme Manager; CCG Commissioning Lead for End of Life Care; Clinical lead for Healthier Northamptonshire; Palliative Care clinical lead; and Workstream Leads. The Programme Board will be responsible for providing the governance framework for workstream delivery, tracking progress of individual workstreams and unblocking any barriers to delivery. It is recognised that because of the membership of the programme board it would be difficult in practice for that board to meet more than once a month. It is therefore expected that each workstream lead will be responsible for progressing their projects. This will include: Production of documentation including a Project Inception Document (which will detail requirements to be agreed by the Programme Board) and a Business Case (for agreement by Clinical Commissioning Groups and Healthier Northamptonshire) Following business case agreement: o Project plans o Risks and Issues logs o Progress update for the programme board o Regular workstream team meetings It is also recognised that there is synergy and interdependency between a number of the deliverables identified in section 5.3. It seems somewhat prudent therefore to group together a number of the deliverables into a single workstream both for the sake of efficiency and to ensure that delivery is aligned. The following is also recognised: 29 September, 2014

30 The biggest chance for success is a partnership approach between providers and between commissioners and providers. In implementing the strategy there will be an impact on existing operational teams. There will be a need for providers of services to release operational managers and other subject matter experts to support implementation of workstreams. The following delivery workstreams are proposed, together with an outline implementation plan. (It is assumed that this End of Life Strategy will need agreement from Healthier Northamptonshire, CCG and provider Boards and will therefore not be ratified before the end of December 2014 at the earliest): Workstream /Deliverable Commissioning Intention Workstream Lead Who needs to be involved? High Level Timescales EPaCCS and Coordination Hub EPaCCS Coordination Hub EPaCCS IM&T Lead for Greater East Midlands Commissioning (access to data and the ability to coordinate IM&T from providers is key to success) Coordination Hub NHFT project manager (NHFT implemented the Frail Elderly coordination hub at Highfield House in Northampton in 2013) Representatives from the following providers: o Kettering General Hospital (IM&T, End of Life Service Management); o Northampton General Hospital (IM&T, End of Life Service Management); o Northamptonshire Healthcare NHS Foundation Trust (IM&T, Service Delivery, End of Life Operational management); o Lakelands Day Hospice (Operational Management) o Primecare (IM&T, Operational Management); and o East Midlands Ambulance Service (IM&T, Operational Management). Representatives from Nene / Corby CCG Requirements January to March, 2015 (PID) Programme Board April 2015 Approval Business Case April to June, 2015 Production Healthier July 2015 Northamptonshire /CCG Approval Build and Test August to October 2015 Implementation November September, 2014

31 Workstream /Deliverable Commissioning Intention Workstream Lead Who needs to be involved? High Level Timescales Patient Centred Service Complete a service review for all end of life services by May 2015 Identification of the relationship between various care providers Understand the service provision between hospices in Northampton, Kettering and Corby A consistent approach from staff supporting people at the end of their life which will require a pan agency approach to the development of standards and clinical pathways As the largest current provider of end of life care this workstream should be led by NHFT (Service Manager for End of Life Care / Service development team) Representatives from the following providers: o Kettering General Hospital (End of Life Service Management); o Northampton General Hospital (End of Life Service Management); o Northamptonshire Healthcare NHS Foundation Trust (Service Delivery, End of Life Operational management); o Lakelands Day Hospice (Operational Management) o Primecare (IM&T, Operational Management); and o East Midlands Ambulance Service (IM&T, Operational Management). Representatives from Nene / Corby CCG Representatives from Healthwatch Requirements January to May, 2015 (PID) Programme Board June 2015 Approval Business Case July to September, 2015 Production Healthier October 2015 Northamptonshire /CCG Approval Build and Test October to December 2015 Implementation October 2015 onwards 31 September, 2014