End of life care strategy 2017/ /21. May 2017

End of life care strategy 2017/18 2020/21 May 2017

Contents Equality statement: 3 Terms and definitions: 3 Introduction 3 Our vision: 4 Background 5 Surrey Downs challenges in end of life care 17 Key areas of development- Six Ambitions: 18 Conclusion 27 References: 27 Appendices 28 Page 2 of 37 Final Version Issued 26 July 2017

Equality statement: Surrey Downs Clinical Commissioning Group End of Life Care Strategy Surrey Downs Clinical Commissioning Group (Surrey Downs CCG) aims to design and implement services, policies and measures that meet the diverse needs of our service, population and workforce, ensuring that none are placed at a disadvantage. It considers the Human Rights Act 1998 and promotes equal opportunities for all. This document has been assessed to ensure that no-one receives less favourable treatment on grounds of their gender, sexual orientation, marital status, race, religion, age, ethnic origin, nationality, or disability. Members of staff, volunteers or members of the public may request assistance with this report if they have particular needs. If the person requesting has language difficulties, and difficulty in understanding this document, the use of an interpreter will be available. Terms and definitions: End of life care The National End of Life Care Strategy (2008) suggests that how we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society and it is a litmus test for health and social care services. The National Council for Palliative Care (2006) describes end of life care as that which; Helps 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 Introduction End of life care is a priority for the NHS on both a national and local level. On a national level, this is reflected in the NHS Outcomes Framework 2014-15 as improving the experience of care for people at the end of their lives and is one of the key areas identified. The National Council for Palliative Care and National Voices (2015) provides a narrative related to critical outcomes and success factors in end of life care from the perspective of the people who need that care, and their carers and families. This serves as a reminder of what really matters and recognises that one size does not fit all. This narrative is highlighted throughout this Strategy. In addition, the National Palliative and End of Life Care Partnership (2015-2020) produced the Ambitions for Palliative and End of Life Care which cites Six Ambitions which are used as the basis of this Strategy to support local vision( NICE, 2015). Surrey Downs CCG recognises its end of life care responsibility and aspires to commission integrated, responsive person centred services that can deliver timely, seamless and high quality end of life care to people and their families, regardless of diagnoses in any setting 24 hours a day, 7 days a week. A range of elements influenced the factors of Strategy development including national and local guidelines, polices and best practice models. Surrey Downs CCG recognises that engaging with patients, carers and professionals is the cornerstone to guaranteeing effective improvement. As such, the CCG recognises that patient involvement from strategic vision to mobilisation of change will be integral. The NHS Constitution (2015) highlights end of life care under the section Patient and the public- your rights and the Page 3 of 37 Final Version Issued 26 July 2017

NHS pledges to you which states that patient involvement in healthcare should include end of life care suggesting the need for involvement in decision making and understanding choice. The involvement of the Surrey Downs Patient Participation Group, members of the Participation Action Network and front line professionals have directly influenced the development of THIS Strategy providing insight from a multiple faceted perspective. The scope of the Strategy applies to all adults, over the age of 18 years old with advanced, progressive, incurable illness requiring end of life care in Surrey Downs CCG Localities. However, this Strategy does not address children and young people under the age of 18, or cover the illegal issues related to euthanasia and assisted suicide. Our vision: The overarching vision of NHS Surrey Downs CCG is to make the last stage of life as good as possible by everyone working together confidently, honestly and consistently to help each and every patient across the CCG and the people who are important to them in all settings (The National Council for Palliative Care and National Voices 2015). Our aim is to commission end of life care that consists of high quality services, embed best practice and support patients and carers, taking account of their physical, psychological, spiritual, cultural and social needs at the end of life and into bereavement As such, we aim to ensure that people have the opportunity to choose and discuss their preferences about where and how they would like to die and how they, their family and their carers would like to be supported and be cared for at the end of life, into bereavement. Surrey Downs CCG will design and commission services collaboratively with Surrey County Council, patients, carers and statutory and voluntary providers to implement appropriate end of life care to meet the needs of the local population. Patients, public and provider engagement has identified the following areas where the CCG can make improvements to ensure a high quality service: Involve local people, patients and carers in the development and improvement of end of life care services. Work collaboratively with health and social care organisations, both statutory and voluntary. Review the services we commission regularly to ensure that they reflect best practice and are responsive to the needs of service users and their carers. Improve early identification of at risk patients and carers. Ensure health and social care professionals are aware of referral pathways. Ensure that all health and social care staff are informed, competent, confident and well trained to meet the needs of the patients, carers and family Coordinate care across sectors and use of IT to facilitate sharing of information to help build health and social care support around the patient. Accessibility of 24/7 care. Single point of access through the Locality Care Models, 111 and Out of Hours. Advance care planning and working together to ensure patients and carers needs and wishes are identified Page 4 of 37 Final Version Issued 26 July 2017

Care after death to provide bereavement services to support patients, relatives and carers at the right time. Background National context Nationally up to 45% of people in the 75+ age group say they would prefer to die at home, but only 20% do. According to the National Council for Palliative Care (2015), many people receive highquality care in hospitals, hospices, care homes and in their own homes but a considerable number do not. As consequence, the Council highlight the following suggestions for the Health and Social Care System: Commissioners should: Commission 24/7 care in the community Commission anticipatory care prescribing Work with public health to appreciate trend and focus on local variation. Use available funding via System Resilience Groups, the Better Care Fund and via invest to save business modelling to improve coordination between Sectors. Service providers should: Encourage the use of Advance Care Plans and sharing of records Ensure hospitals work closely with local hospices and other community providers and work with commissioners. Take steps to identify patients who are at the end of life earlier, working with all stakeholders. Taking the above into account this Strategy supports the end of life pathway below identified by the Department of Health s End of Life Care Strategy (2008). This recognises the different stages through a patient s end of life journey as well as support for carers and families, information and spiritual care needs. This document will reflect this pathway by demonstrating the CCGs commitment through the Six Ambitions (National Palliative and End of Life Care Partnership 2015-2020) Page 5 of 37 Final Version Issued 26 July 2017

Local Context Case for change Surrey Downs CCG has the second largest growing population of all the Surrey CCGs and has approximately 300,000 people registered with GPs practices in the area. Approximately a quarter of the Surrey Downs CCG population is made up of children and young people aged 0-19 years More than half (56%) of the population is of persons aged between 20-64 years Approximately a fifth (20%) of the population are persons aged 65 years and over Less than one in 30 (3%) are aged 85 years and over. Page 6 of 37 Final Version Issued 26 July 2017

Figure 1 below, shows Surrey Downs Map showing the wards, acute hospitals, GP practices, and community hospitals Figure 1. Surrey Downs CCG Map From the above map there are large areas of Surrey Downs which are rural with boarders relating to West Sussex and London. Surrey and Sussex Hospital Trust support Dorking, Ockley, Capel and Charlwood whereas Epsom and St Helier Hospital Trust and Kingston Hospital Trust support the north of the patch. The population is denser in the north than the south which is reflected by more resource in GP and community hospital provision. It is important to note that rural diversity needs to be taken into account as there is possibly different cultural values and community representation. In terms of specialist palliative care services Dorking (north) areas are supported by St Catherine s and the Epsom and East Elmbridge (south) area is supported by Princess Alice Hospice. Page 7 of 37 Final Version Issued 26 July 2017

Figure 2 below, highlights Surrey Downs population growth between 2015 and 2025 suggesting increased demand over time as the population ages. This needs to be taken into account in this Strategy and in future Strategy reviews. Figure 2; Surrey Downs population growth map Surrey Downs demographic: Understanding Surrey Downs CCG demographic can help ensure the CCG provides appropriate care for the population. The Surrey Downs Health Profile (2015) states, whilst overall the area covered by Surrey Downs CCG is one of the least deprived in the country, there are pockets of deprivation in Court, Cobham Fairmile, Holmwood, Preston and Ruxley. The majority of the population in Surrey Downs CCG (84%) reported their ethnic group as White British. A small but substantial number (7%) describe themselves as other white, likely to be either Eastern European or possibly Gypsy Roma Traveller. There are around 389 Gypsy Roma Traveller in Surrey Downs. Almost 3% of the population describe themselves as other Asian and are likely to be Nepalese, while 1.6% of the local population describes themselves as Indian, followed with 0.95% Black African Caribbean and 0.43% Pakistani. In Surrey Downs CCG, 4,031 adults (18-64) are predicted to have a learning disability, which is estimated to increase to 4,200 by 2025. Learning disabilities in adults aged 65 and over are predicted to increase from 1,203 to 1,457 from 2015 to 2025 which an increase of 21%. We also have a small but an emerging number of young adults transitioning from Children s services with life limiting conditions. This group present a new challenge often with presentation s not widely experience in adult end of life care. The difference in provision from children s and adults EoLC does warrant consideration on how Page 8 of 37 Final Version Issued 26 July 2017

collectively we work on addressing the changing model for EoLC across the area of Surrey. Factors affecting health and wellbeing including end of life care is subject to varying factors including housing, access to services, education, consumption of alcohol and weight as well as social isolation. For this reason, this Strategy has been developed in partnership with Surrey County Council and other statutory and non statutory providers to ensure we take account of the Surrey Health and Wellbeing Strategy. This Strategy takes into account the following Local Policy and Strategy 1. Surrey Downs Integrated Commissioning Plan 2014-2019 2. Surrey Downs CCG Health Profile (2015) 3. Surrey Health and Wellbeing Strategy (2016) 4. Frail Elderly Strategy (2015) 5. Compassionate Communities (2013) 6. Surrey Downs CCG Dementia Strategy Figure 3 and 4, shows the place of death between 2011-2015 Figure 3 Place of Death by Age (2011-15) Surrey Downs CCG Number of Deaths Gender Males Females Place of Death < 64 Years 65-69 70-74 75-79 80-84 85+ Grand Total Care Home 30 39 47 109 193 616 1,034 Home 257 125 147 174 208 357 1,268 Hospice 90 62 70 59 59 81 421 Hospital 384 230 283 386 571 1,232 3,086 Other 82 12 15 17 9 18 153 Total 843 468 562 745 1,040 2,304 5,962 Care Home 19 23 32 106 231 1,586 1,997 Home 162 63 106 123 169 494 1,117 Hospice 113 67 56 56 62 101 455 Hospital 251 121 180 341 505 1,730 3,128 Other 28 3 7 7 10 26 81 Total 573 277 381 633 977 3,937 6,778 Grand Total 1,416 745 943 1,378 2,017 6,241 12,740 Figure 4 Percentage of Deaths Gender Males Place of Death < 64 Years 65-69 70-74 75-79 80-84 85+ Grand Total Care Home 3.6% 8.3% 8.4% 14.6% 18.6% 26.7% 17.3% Home 30.5% 26.7% 26.2% 23.4% 20.0% 15.5% 21.3% Hospice 10.7% 13.2% 12.5% 7.9% 5.7% 3.5% 7.1% Hospital 45.6% 49.1% 50.4% 51.8% 54.9% 53.5% 51.8% Other 9.7% 2.6% 2.7% 2.3% 0.9% 0.8% 2.6% Total 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% Page 9 of 37 Final Version Issued 26 July 2017

Females Care Home 3.3% 8.3% 8.4% 16.7% 23.6% 40.3% 29.5% Home 28.3% 22.7% 27.8% 19.4% 17.3% 12.5% 16.5% Hospice 19.7% 24.2% 14.7% 8.8% 6.3% 2.6% 6.7% Hospital 43.8% 43.7% 47.2% 53.9% 51.7% 43.9% 46.1% Other 4.9% 1.1% 1.8% 1.1% 1.0% 0.7% 1.2% Total 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% From the above information it is evident that most death occurs in hospital followed by home and care homes. There is also a significant jump in hospital deaths from the 80-84 year old age group to the 85 + age group. This may be related to social isolation, lack of informal carers or increasing frailty and complexity. Figure 5 shows the underlying cause of death between 2011-2015 Place of Death by Main Underlying Cause- Surrey Downs CCG (2011-15) Number of Deaths Gender Place of Death Underlying Cause of Deaths Cancer CVD Digestive Other Respiratory Grand Total Males Females Care Home 250 227 13 388 156 1,034 Home 488 477 35 147 121 1,268 Hospice 361 16 1 27 16 421 Hospital 679 912 184 659 652 3,086 Other 18 65 2 63 5 153 Total 1,796 1,697 235 1,284 950 5,962 Care Home 284 522 19 910 262 1,997 Home 398 389 31 188 111 1,117 Hospice 404 13 4 23 11 455 Hospital 573 891 247 748 669 3,128 Other 26 23 24 7 81 Total 1,685 1,838 301 1,893 1,060 6,778 Grand Total 3,481 3,535 536 3,177 2,010 12,740 Figure 6 Percentage of Deaths. Gender Place of Death Underlying Cause of Deaths Cancer CVD Digestive Other Respiratory Grand Total Males Females Care Home 13.9% 13.4% 5.5% 30.2% 16.4% 17.3% Home 27.2% 28.1% 14.9% 11.4% 12.7% 21.3% Hospice 20.1% 0.9% 0.4% 2.1% 1.7% 7.1% Hospital 37.8% 53.7% 78.3% 51.3% 68.6% 51.8% Other 1.0% 3.8% 0.9% 4.9% 0.5% 2.6% Total 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% Care Home 16.9% 28.4% 6.3% 48.1% 24.7% 29.5% Home 23.6% 21.2% 10.3% 9.9% 10.5% 16.5% Page 10 of 37 Final Version Issued 26 July 2017

Hospice 24.0% 0.7% 1.3% 1.2% 1.0% 6.7% Hospital 34.0% 48.5% 82.1% 39.5% 63.1% 46.1% Other 1.5% 1.3% 0.0% 1.3% 0.7% 1.2% Total 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% Figure 5 and 6, above suggest that most deaths occur in hospital for all underlying causes, followed by home and care home, with the exception of respiratory which occurs more in care homes than at home. There is a large percentage difference between hospital and home deaths which suggests there is a lot of work to be undertaken to change this underlying and historical position. Figure 7 shows place of death by gender and year between 2011-2015 Place of Death by Gender and Year: Surrey Downs CCG Number of Deaths Year of Death Gender Males Females Grand Total Place of Death 2011 2012 2013 2014 2015 Care Home 194 211 202 213 214 1,034 Home 215 244 275 255 279 1,268 Hospice 79 99 96 77 70 421 Hospital 573 588 607 668 650 3,086 Other 34 21 32 35 31 153 Total 1,095 1,163 1,212 1,248 1,244 5,962 Care Home 339 393 410 414 441 1,997 Home 181 206 233 248 249 1,117 Hospice 92 97 96 89 81 455 Hospital 634 643 608 616 627 3,128 Other 15 20 18 12 16 81 Total 1,261 1,359 1,365 1,379 1,414 6,778 Grand Total 2,356 2,522 2,577 2,627 2,658 12,740 Figure 7 above, shows between 2011 and 2015 that most males and females died in hospital followed by home and care homes. There has also been a reduction in hospice deaths showing a move to support more care in the community. Page 11 of 37 Final Version Issued 26 July 2017

Figure 8- shows hospital deaths and age band between April 2013- Sept 2016 Figure 8 above, shows the age band and month of acute hospital deaths as well as the seasonal variation for Surrey Downs residents. A total of 65% of Surrey Downs residents die in Epsom Hospital. Right Care Data In December 2016, Public Health England produced a Commissioning for Value Long Term Conditions Pack for each CCG showing comparison with England and comparator/ peer CCGs against each domain which included end of life data. In comparison with our comparator CCGs the data pack suggests that Surrey Downs CCG achieves below average in terms of death in usual place of residence and is above average for number of hospital admissions in the last year of life. This would indicate that patients at the end of life in Surrey Downs CCG have multiple hospital admissions causing change and variations in care. Surrey Downs CCG patients are also less likely to die in their usual place of residence compared to patients in peer CCGs. This means that Surrey Downs is rated as red (worse than its peers) in all areas related to end of life suggesting a call to action to improve end of life care experience and outcomes for its residents. Local policy demonstrated in the Surrey Downs CCG Integration Commissioning Plan 2014-19 highlights end of life as a CCG Priority (Priority Four) which states the need to Enhance support for those patients who require end of life care. This means that relevant CCG commissioning intentions need to consider end of life care as a priority within relevant programme plans. Page 12 of 37 Final Version Issued 26 July 2017

The Sustainability and Transformational Partnership Surrey Downs CCG working with its partners of Guildford and Waverly and North West Surrey CCG are developing the Surrey Heartlands Sustainability and Transformation Partnership (STP) supporting 850,000 people. It is anticipated this Strategy will support Surrey Heartlands STP in a collaborative way to ensure end of life Strategy s and delivery programmes learn from each other to improve over all patient outcomes and minimise duplication. Working together as an STP footprint allows Surrey Downs to address system challenges, as well as individual local variation. Devolution Local and national health and care organisations have signed an agreement to improve health and social care in Surrey Heartlands. The agreement sets out a roadmap towards devolution, outlining how partners will work together to improve the health outcomes of people living in Surrey Heartlands; which covers the area looked after by Guildford & Waverley, North West Surrey and Surrey Downs Clinical Commissioning Groups. It also means more local accountability for the spending of health and social care budgets. The agreement signals that central to the approach health, public health and social care unification is devolution. The health and social care needs across Surrey Heartland STP footprint will be assessed and agreed a shared set of health and social care outcomes within national frameworks. This will result in system oversight and performance management of health and social care providers and the allocation of resources aligned to the priorities of the Surrey Heartland population. Components of end of life care may be incorporated into the reporting framework related to devolution but this has yet to be confirmed. Locality Care Models Surrey Downs CCG contains three distinct health communities in the areas of Epsom, East Elmbridge and Dorking. These areas are represented by our GP localities, each of which meet monthly with a locality chair and are represented on Surrey Downs CCG Clinical Cabinet. Across the three localities the following principles apply: Providing care to a defined, registered population of between 30,000 and 50,000; Supporting an integrated workforce, with a strong focus on alliance spanning primary, secondary and social care and voluntary sectors. A combined focus on personalisation of care with improvements in population outcomes. The Epsom Locality works closely with Epsom and St Helier University Hospitals NHS Trust, through the Epsom Health and Care Alliance, to develop integrated services between Epsom General Hospital, community services, social care, mental health and general practice. In both East Elmbridge and Dorking localities, the nearest acute hospitals are some way outside of the Locality and CCG boundary (Kingston and East Surrey Page 13 of 37 Final Version Issued 26 July 2017

Hospitals respectively). Whilst both localities work with their acute providers as part of the local health economy, there is necessary focus on developing services out of the acute setting, in the Locality. This local context drives the model of care for service delivery, including end of life care, which: Delivers the principles for high quality community services. Creates local accountability and flexibility around locality-based integrated team Maintains economies of scale for administrative and infrastructure issues and more specialist community services which do not have a locality focus. Figure 9 below, shows an info-graphic of the Surrey Downs Locality Model which highlights the three Locality Care Models. It is this Strategy s ambition that appropriate elements of end of life will be integrated into this model to support seamless co-ordinated working against defined outcomes. Specialist end of care will be supported across all three Locality Models to achieve the necessary economy of scale and to assure parity of specialist services across the CCG area. Appendix 3 highlights Surrey Downs CCG providers who support end of life care and are or potentially will be aligned to the Locality Care Models below. Figure 9- Surrey Downs Locality Care Model Page 14 of 37 Final Version Issued 26 July 2017

End of Life CCG Governance The CCG recognises its commitment to end of life through the End of Life Project Group which is part of the Integration and Urgent Care Programme (see appendix 1- Governance Chart). This Project Group represents quality, innovation, productivity and prevention projects which supports change management control, it is anticipated that the delivery plan identified from this Strategy will be supported by the End of Life Project Group. Patient experience Poor experience and outcomes suffered by patients and their carers at the end of life cannot be underestimated in terms of quality and loss. Poor experience can lead to increased grief and bereavement causing an unnecessary burden on carers who have already experienced the complexity of a caring role. Inappropriate admission to hospital at the end of life can increase the stress and pain together with increasing anxiety and or depression exposing patients to increased risk. Physical symptoms such as pain, breathlessness, nausea and increasing fatigue are common in people who are approaching the end of life; patients may also experience social, psychological, emotional and spiritual difficulties. The proper management of these issues requires effective collaborative, multidisciplinary working between generalist and specialist teams and the community, ensuring that the patient and family is kept centre stage. To illustrate this further, the patient story below describes a personal account and relays the importance of effective working. Denise and Hugh s story My name is Hugh Stott and my experience is of a full time carer for my wife from around 2005 to mid-2014 when she passed away. Before I describe my experience, I would like to take a few minutes to tell you about my wife, Denise. During our married life, apart from England, she lived in Italy, Yugoslavia, Switzerland, and Malaysia. She had a vocation as a nurse, enjoyed playing tennis, travelling, people and watching some television programmes. She was outgoing with a lively sense of humour, however, she was of a nervous disposition. She was kind and diplomatic. She gave a lot of her time to coaching the children at her daughter s school in tennis and later on working as an auxiliary bank nurse at St George s Hospital, at an orphanage in Malaysia, in a therapy group for anorexic adults and with the Samaritans. We had 1 daughter and 2 step daughters. She was the step grandmother to 5 children; 3 boys and 2 girls. However, due to her failing health she never really knew 3 of them. She was loyal and family orientated, but not keen on cooking! As you can see, Denise had many interests. My wife had a background of anxiety and periods of mild depression. In 2005 she was knocked down by a dog and fractured her shoulder, there was also evidence of her having problems with her left hip. From this time on her anxiety and depression worsened. In early 2008 she was referred to the consultant psychiatrist for Mental Health Services for older people. Page 15 of 37 Final Version Issued 26 July 2017

Her mood improved through the drugs and therapy, and in 2009, it was recommended and she decided that she would undergo a hip operation as the pain was thought to be a major factor in her troubles. She never really recovered mentally from this operation and as a result of the prosthesis slipping within four days of her returning home and two further major operations within 18 months following two falls her left leg was pinned so severely that she was never able to bend it again, although she could put weight on it. In August 2010 she was diagnosed with Parkinson s disease and from this time onwards her physical and mental conditions both deteriorated rapidly. Her Parkinson s made movement more difficult and she suffered long periods of pathological crying, a highpitched, keening wail, which had become more frequent. Her consultant neurologist was working via the GP, to try to get the correct dose of drugs to control the Parkinson s - a long process of trial and error. I effectively became her daily carer from 2005 to 2011 when our daughter came to live with us on a temporary basis. There was of course help from the community team each time she was discharged from hospital and the Social Services were involved with helping me to find carers. In August 2011 as part of a discharge from Epsom Community Hospital we were advised to apply for Continuing Healthcare funding, An assessment was undertaken in February 2012, when a district nurse, who had visited us previously, came and carried out an assessment. Our excellent Social Worker, my wife, my sister - who was also a trained social worker, my daughter and I were present. My recollection is that the exercise lasted in excess of 2 hours. From the time of her discharge from the Community Hospital, my daughter and I, became increasingly worried about Denise s health. In March 2014 she was admitted for one month for 24 hour observation. It was here that Parkinson s Lewybody Dementia was diagnosed. In April we sat for 4 hours meticulously going through another Continuing Healthcare assessment, this was important because I needed support to help care for Denise. I heard nothing regarding the assessment for a long time. I spoke to the social worker and District Nurse who had compiled the document and explained the urgency in getting a decision as I would now need an additional full time carer to take over the role my daughter had undertaken as she was returning to America. By the end of August we still had heard nothing about the assessment. I felt like I had entered a black hole where I had no information. The social worker made enquiries and discovered that the whole case was now out of date and another assessment (Review) would have to be undertaken. Finally, after 17 months after the initial application I received confirmation that Healthcare funding would be granted and private care could be purchased. With regards to the health professionals I have nothing but admiration for them. They were all brilliant and gave my wife the best treatment she could possibly have had. Page 16 of 37 Final Version Issued 26 July 2017

The Princess Alice Hospice was exceptional with their day care and the Alzheimer s Society singing group was possibly the event my wife enjoyed most towards the end of her life. The greatest disappointment was probably private care agencies. With dementia patients it is important, that as much as possible, the same carers should come each day. Many did not achieve this and so I had to change agencies often. Eventually I found one that was acceptable. There is a certain level of daily stress experienced when looking after a loved one in the final stages of their life. Towards the very end of her life, my wife, Denise Stott, was taken ill on Sunday 4 th May. Our GP or a district nurse visited us daily thereafter. On Monday 12 th May, the GP examined my wife. After the examination she took us aside to say that my wife was in the process of dying and it was likely to happen within the next two weeks as her food and liquid intake became less. On the morning of the 15 May the GP called in the palliative care team from the Princess Alice Hospice. My wife, who was in pain, was given medication. My wife died at 0830. I do not believe that caring is purposely made difficult. I understand that NHS and Social Services are busy. However, my experience is that it was stressful and often difficult to communicate with the numerous health professionals This personal account shows how the system can sometimes work against the patient and their carer and how important it is for professionals to take bold steps to challenge the system to break down processes and to keep the patient and carer at the centre of everything we do. Surrey Downs challenges in end of life care Those commissioning and delivering health and social care services in Surrey Downs face multiple challenges to meet the needs and preferences of people as they approach end of life. A number of specific problems and concerns about end of life care have been identified which has been corroborated by the Patient Participation Group. As a society we do not talk openly about death and dying. Relatively few adults, including older adults, have discussed their own preferences for care with a close relative or friend, making it difficult for others, family and professionals, to help ensure their wishes are met Healthcare professionals may not recognise that the patient is reaching the end of their life. Health and social care staff often find it difficult to initiate discussions with people about the fact that they are approaching the end of their life leading to unnecessary delay and added time pressure to what are challenging conversations Death may be seen as a failure by clinicians, who may not have the skills, experience or training to hold such discussions In the absence of open discussions it is difficult or impossible to elicit people s needs and preferences for end of life are and to plan accordingly The additional needs of those with complex physical, learning or mental health issues may not be identified, resulting in unmet needs Page 17 of 37 Final Version Issued 26 July 2017

People frequently need care from multiple services and they may need, or want, to transfer between locations (home, hospital, care home and hospices) and geographies. Care provision is often not well coordinated. People who are approaching the end of life need access to care and support 24 hours a day, 7 days a week. Services in the community are sometimes unable to respond to these needs because of capacity limits, resource constraints or inadequate training resulting in people being admitted to hospital as an emergency rather than being cared for in their usual place of residence (home or care home) Health and social care professionals may not be aware of the resources available to support patients and carers, such as Continuing Healthcare funding, or services available in the voluntary or third sectors to ensure maximum comfort for the patient and support for carers. Following an expected death, delays in timely verification and certification may lead to the unnecessary involvement of the coroner or police which can add to the distress of the bereaved Support for family and carers, during a person s terminal illness and into the bereavement phase has at times been reported as inadequate. This can impact adversely on the carer s health and wellbeing and on their ability to provide care Surrey Downs CCG End of Life aims & objectives: Surrey Downs aims to strive for excellence in all aspects of end of life care in all settings across the CCG ensuring that; People are treated with dignity and respect resulting in a positive experience of the care they receive. Health and social care support will be available to people 24 hours a day, 7 days a week. Providers will work in an integrated way offering seamless holistic services to support a wide range of individual needs and preferences. A comprehensive service will be offered in line with the CCGs Equality and Diversity policy. Health and social care practitioners will act with confidence, support and have appropriate skills and competences to deliver care, supported by a framework of training and education. Carers will feel informed and supported in balancing care of their loved ones and maintain their own health and wellbeing which may include work commitments. People approaching the end of their lives will receive high quality, effective care and will be supported to die in their preferred place of care in accordance with their needs, wishes and preferences Following the death of a patient, family or friends wishing to receive bereavement care will be offered appropriate support. Key areas of development- Six Ambitions: The National Palliative and End of Life Care Partnership produced Six Ambitions for palliative and end of life care (2015-2020) as: 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 Page 18 of 37 Final Version Issued 26 July 2017

5. All staff are prepared to care 6. Each community is prepared to help Surrey Downs Clinical Commissioning Group End of Life Care Strategy The Six Ambitions support the framework for this Strategy and reflect the aims objectives above, supporting an individual focus. Using the building blocks within each Ambition Surrey Downs CCG aims to ensure that each person is seen as an individual. Ambition 1: Each person is seen as an individual: Surrey Downs CCG believes that patients are central to the how we design and commission services. Honest conversations: Care providers will have the skills and training which respond to the role specific challenges of a diverse workforce. Care at the end of life is everyone s responsibility and must be aligned to workforce strategy and development in each organisation. Systems for person centred care: Providers will utilise validated assessment tools to measure patient outcomes against an individual s personally defined goals. Assessment tools will be recognisable to providers and duplication will be prevented by improved multidisciplinary coordination support by the CCGs Integration and Frail Elderly Strategy and Locality Care Models. Clear expectations: Commissioners will launch a web page on the CCGs website as a central information point where people can easily access clear information about local palliative and end of life services, including details about the level of service that they should expect and what they are entitled to. This website will be maintained by the CCG and remain updated, and aligned to SCC information portals. Access to social care: Support will be available to people 24 hours a day, 7 days a week to enable supportive care to be delivered. This care will be made available through collaborative coordination available in Locality Care Models built around the local community. Providers (voluntary and statutory) will work in an integrated way offering seamless, holistic services to support a wide range of individual needs and preferences. A comprehensive service will be offered in line with the CCGs Equality and Diversity Policy. Surrey County Council (SCC) plays a key role in the delivery of end of life care. Social care services aim to work with partners in the assessment, support and planning of care for patients which delivers personalised choice and control. Surrey County Council (SCC) considers the support to carers as a critical element of this process which is a statutory requirement. SCC is committed to working jointly with all other services providing help and support in order to ensure that all care is fully integrated and personalised under the Care Act (2015). As such, increasing awareness of social care services will support the collaborative working. Helping people take control: The CCG will support people to take control and to tailor their end of life care through the use of Advanced Care Planning, personal budgets and through the personalisation agenda supported by the Surrey Health and Wellbeing Strategy. A focus on individual preferences and care planning will be coordinated to follow the patient if they need to vary their care or be admitted to hospital. Page 19 of 37 Final Version Issued 26 July 2017

Integrated care: Surrey Downs Clinical Commissioning Group End of Life Care Strategy As the services required by people approaching the end of life falls across different sectors and settings, it is vital to take an integrated approach to planning, contracting and monitoring of service delivery. The CCG will ensure that all relevant services are coordinated and that providers will work with the CCG to identify areas where Health and Social Care can provide seamless, holistic integrated delivery of services. Locality Care Models will be central to delivery, decisions will be made as close to the patient and their carer as possible, supported by the principles of subsidiarity. Surrey Downs CCG will work closely with SCC through the Surrey Health & Wellbeing Board, the Sustainability Transformational Partnership (STP), The Local Joint Commissioning Group and with the End of Life Project Group to ensure the delivery of an integrated approach between health and social care is achieved. Furthermore the CCG will learn from nationwide vanguards supported by the Five Year Forward view in relation to end of life care. In 2017/18 a full review of end of life services will be aligned with integration commissioning intentions with a view of incorporating appropriate alignment and delivery of care within the Surrey Downs Locality Care Models. Good end of life care and bereavement: Bereaved people will have equality of access to bereavement and pre-bereavement care. This will be informed by access to updated and understandable information which will take account of the local community and equality and diversity agenda. This support will include the needs required for those caring for a loved one who is expected to die and for those who suffer bereavement, including traumatic death. Ambition 2: Each person has fair access to care: Surrey Downs CCG recognise that people from black and minority ethnic communities, people with learning disabilities, dementia, mental health conditions and people living in deprivation have potentially a poorer experience of end of life care. As highlighted earlier Surrey Downs CCG have small pockets of diversity that need to be taken into account within this Strategy. A large proportion of the population l live in rural settings where evidence suggest this can also impact on a poorer experience of care. Using the ambition blocks Surrey Downs CCG can improve these areas of care by: Using existing data: Understanding the population s needs by utilising existing data helps to design and commission services that fit the need to the population. This Strategy has reviewed demographic data and Rightcare data produced by NHS England. However, it is anticipated that as part of on-going evidence gathering of local regional and national qualitative and quantitative data will enable improved end of life commissioning intentions to develop alongside the STPs and CCGs subsidiarity and Locality Care Models. This will include the options of single access for end of life services to prevent the end of life patient pathway becoming confused and uncoordinated. Community partnerships: Dying, death and bereavement affects everyone, so everyone must be able to get care that works for them personally, for their family and carers and for their communities. Engagement with different faith groups and cultural communities as well as diverse organisations that support all adults at the end of life is fundamental to ensure that services are meeting the need of the whole population. Participation Action Network (PAN) is the CCGs forum to help facilitate communication and engagement to harder to reach Page 20 of 37 Final Version Issued 26 July 2017

and seldom heard communities within our locality. PAN members will help to represent the interest of the groups reflected in Surrey Downs demographic and help facilitate end of life conversations. Additionally, working alongside Surrey County Council, Surrey Downs CCG will ensure that community groups are recognised across the health, social and voluntary care networks (both Nationally and Locally). The CCGs Locality Care Models are built on existing communities and are seen as integral to taking account of local need, taking into account local need and resource including faith groups who can support improved patient outcomes. The CCG supports new initiative and models of care for Transition Care for young adults moving on from children s to adult services and shall work in partnership to ensure that the patient, carer and family experience is of a high quality. Gathering of new data: The CCG will continue to routinely collect and report on Palliative and End of Life Care activity to inform on-going quality improvement work. This data will include monitoring of protected characteristics to ensure that there is equality in service delivery. It is anticipated that this data will be coordinated with integrated care data from multiple sources to enable greater intelligence and improved commissioning decisions. Unwavering commitment To achieve equity in access and responsiveness requires unwavering commitment. Local systems will demonstrate progress and establish accountability mechanisms to ensure this ambition is kept at the centre of the day-to-day organisation and delivery of care. The CCG is committed through the commissioning cycle to deliver integrated end of life services through multiple contracts that meet the needs of patients and local communities. In addition, there is commitment to work with SCC in alignment of contracts and to support economies of scale to drive up efficiency and reduce waste. The CCG is committed to the Priorities highlighted in the Integrated Commissioning Plan (2014-2019) and through the STP Heartlands to deliver the best affordable care. Data will measure activity such as timely access to transport, provision of equipment, the dispensing of anticipatory drugs and access to care to demonstrate this commitment through the End of Life Project Group. Population based needs assessment and commissioning The Health and Wellbeing Boards lead on the development of population based needs assessment for end of life care services. Surrey Downs CCG are party to the development and review of the Surrey Joint Health and Wellbeing Strategy which highlights Prioity four and Improving older adults health and wellbeing to enable the following outcomes Older adults will stay healthier and independent longer Older adults will have a good experience of care and support More older adults with dementia will have access to care and support Older adults will only experience a hospital admission when necessary Older carers will be supported to live a fulfilling life outside caring Page 21 of 37 Final Version Issued 26 July 2017

Surrey Downs Clinical Commissioning Group End of Life Care Strategy The End of Life Project Group will aim to review further data to develop the population needs assessment from a qualitative and quantitative perspective including all ages. Person centred outcome measurement Ensure the services delivered are responsive to meet the needs of people within a defined time frame. Where gaps or inequity of service provision have been identified, Surrey Downs CCG will ensure these are addressed so that unnecessary hospital admissions are avoided and more people are able to live and die in their preferred place of care. If a hospital admission is required discharge to assess processes and in-reach schemes will seek to promote timely discharge, furthermore front door A&E schemes will seek to prevent admission and Locality Models of Care will focus on advanced (anticipatory) care planning to prevent admission for patients at risk. Ambition 3: Maximising comfort and wellbeing Many people approaching death are fearful of being in pain or distress. Dying and death can be powerful sources of emotional turmoil, social isolation and spiritual or existential distress. Surrey Downs is committed to: Recognising distress whatever the cause: Ensuring health and social care staff at all levels have the necessary knowledge, skills and attitudes related to care for the dying is critical to improving end of life care. This means that end of life care needs to be integral to training curricula for most staff groups. The End of Life Project Group will consider how training is provided to ensure that relevant staff are competent and are able to access to education and training in a timely manner. Skilled assessment and symptoms management: Anticipatory prescribing is designed to enable prompt symptom relief when the patient needs it. Care UK, currently provide an out of hours anticipatory drug service. However, end of life education and training must include anticipatory prescribing as a consideration. Access to anticipatory drug will also be a focus. Addressing all forms of distress: Surrey Downs CCG recognises that distress comes in multiple forms. To ensure that the physical, emotional, social and spiritual distress of end of life is catered this Strategy will work collaboratively with multiple organisations including IAPT, social care and the voluntary services that specialise in the given areas ensuring a holistic and person centred care experience. the training and education on end of life care will include recognition of all forms of distress and appropriate referral processes to manage distress. Priorities for care of the dying person: Assessment of needs, understanding individual wishes and preferences, agreement of an Advance Care Plan that reflects the needs and wishes of the patient is essential to good patient outcomes. In cases where an individual may lack capacity, Surrey Downs and its providers will use the principles of the Mental Capacity Act 2005 to assess and support that person to make their own decisions or make best interests decisions on their behalf. The ACP will be a living document that is reviewed and/or amended when reviewed. To ensure that all people identified as needing end of life care can discuss their wishes and preferences and are involved in the completion of an Advance Care Plan which is then shared with relevant service providers once patient consent is obtained. Page 22 of 37 Final Version Issued 26 July 2017

Education and training across settings will include information on ensuring care is provided in line with the Five priorities of Care for the Dying Person as recommended by the Leadership Alliance for the care of Dying people. Specialist palliative care: Specialist services are provided by the hospices that provide a type and philosophy of care that focuses on the physical, emotional and spiritual care of people with life- limiting illness regardless of diagnosis. Care can be offered as either inpatient, day care or community support and will include services to support individuals complex needs as well as incorporating complementary therapies, chaplaincy, rehabilitation, counselling, welfare and benefits advice, art and music therapy and bereavement support. Surrey Downs CCG is supported by two hospices of Princess Alice Hospice providing care to the East Elmbridge and Epsom areas whilst St Catherine s Hospice supports patients in the Dorking area. Hospices services are considered fundamental for patient outcomes. Rehabilitation is an important aspect of palliaitive care and supports a person s independence and social participation. Access to multidisciplinary teams across acute and community settings including occupational therapy and physiotherapy and also access to necessary mediaction and equipment will support a patient s rehabilitative requirements. Hospices play a key role in rehabilitaion through their services in patients homes and also more focussed admissions to hospices for palliative rehabilitation. Ambition 4: Care is co ordinated Surrey Downs CCG believes that well-coordinated care results in improved experience for the patient, carer and family. Improving the communication between professionals and organisations builds the care with patients at the centre and helps to reduce the distress associated with lack of coordination. Surrey Downs CCG is committed to: Sharing records: Coordination of care and better use of IT improves seamless working with multiple organisations through the use of our primary care systems, EMIS and System1. This will potentially include templates such as Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) and verification of death confirmation. Surrey Downs CCG will ensure that all healthcare providers involved in end of life care utilise advance care planning including, Locality Care Models, GPs, OOH GPs, Continuing Healthcare, hospices, community nursing, specialist palliative care teams, the ambulance service, identified acute clinicians and local social services. Surrey downs CCG will develop data sharing agreements and shared records through programmes such as Patients Know Best which puts the patient in control of their medical record through online patient portal software. Alongside this, Surrey Downs will investigate alternative systems such as EPaCCS which have shown significant reductions in hospital deaths in other CCG areas. Clear roles and responsibilities: Page 23 of 37 Final Version Issued 26 July 2017

Systems of care may be immature in different respects and may need to be guided towards greater sophistication by the work of commissioning partnerships that are knowledgeable about the specific requirements of good palliative and end of life care. Organisational leadership is vital. Information for families, carers and individuals should be joined up in a way that provides a clear oversight of the respective roles and responsibilities of both service and education providers. The roles of these providers should reflect the frameworks set by national regulators. The End of Life Project Group will support regular reviews of changes in organisational form and roles and responsibilities with a view on keeping the patient centre stage. A system wide approach: Surrey Downs is committed to meaningful engagement and co- design. As such, we will ensure that people with lived experience and professional experience of death, dying and bereavement will work together in the design and implementation of any improvement to the current service. This will be achieved through multiple mechanisms including workshops, attending forums, patient and carer representation on the Project Group, Third Sector Organisations that represent the interest and facilitate conversations with seldom heard groups and communities. Everyone matters: Surrey downs will ensure that the service that is provided is equitable and inclusive. A review of the end of life pathway including a review of all referral mechanisms and access to services will be undertaken. This process mapping and gap analysis will develop our understanding of the patient experience and the quality of care they receive. The review will take into consideration the whole population. With a focused consideration on: Young adults, their carers and family transferring from children services to adult services. Carers including young carers Older people and frailty Patients with dementia Patients and carers with learning disabilities. Continuity of partnership: The CCG has active partnerships driving coordinated end of life care across local health, social and voluntary care providers. In 2017/18 a review of end of life services will be aligned with integration commissioning intentions with a view toincorporating appropriate alignment and delivery of care within the Surrey Downs Locality Hub Models. Ambition 5: All staff are prepared to care Surrey Downs CCG understand that caring for the dying, looking after the bodies of the dead and supporting people facing loss and grief, before and after death, is difficult and distressing. We believe that a supported and educated workforce will ensure resilience, in turn, we must care for our work force providing them with the tools to care for our patients. Surrey Downs CCG is committed to: Education and training Page 24 of 37 Final Version Issued 26 July 2017

All staff must be competent and confident to deliver care. Alongside this, management should be educated to ensure they are able to support their staff and provide effective leadership. Ensuring health and social care staff at all levels have the necessary knowledge, skills and attitudes related to care for the dying is critical to improving end of life care. This means that end of life care needs to be integral to training curricula for most staff groups. The End of Life Project Group will consider how training is provided, including Health Education England and Kent, Surrey and Sussex Academic Health Science Network, to ensure that provider workforce has the necessary competences and access to education, training and support. This will include legislation, communication and improving the practitioners knowledge based judgement. Throughout, 2017/18 providers will assist in identifying end of life training needs for healthcare professionals and to work with the CCG in addressing those needs and to ensure that health and social care professionals have the most up-to-date knowledge and competencies to deliver end of life care. A key area is, that staff are competent in, early identification of a patient who is at the end of their life. Of particular note, is the need to identify the majority of people who die with non-malignant life limiting illness those with co morbidities and those who are frail. In 2017/19 a review of end of life care training and education will be completed with a view to roll out a menu of opportunities in collaboration with the Kent and Sussex Health Education Network and the STP Academy. This will include all providers including care and nursing homes. Executive governance Ensure governance arrangements are identified that support commissioners, service users and providers to be informed and involved in change management, decision making, performance and risks related to end of life care. Due to the collaborative nature of this Strategy with Social Care, the District and Borough Councils and the third sector the CCG will lead an End of Life Project Group which will be accountable to the CCG Governance structure (appendix 1) to achieve identified milestones and deliverables in line with an agreed programme plan. Ambition 6: Each community is prepared to help. The community we live in can bring a wealth of skill and expertise. However death and dying is still a taboo subject in many cultures. Surrey Downs CCG is committed to: Compassionate and resilient communities; and promoting awareness The CCG will develop a communication and engagement plan to ensure end of life is promoted. The communication and engagement plan will also promote the opportunities in the development, design and implementation of the service improvement. Surrey Downs is committed to design and commission services in our area around population need and in partnership with individuals and local communities. The CCG and partners will support Compassionate Communities (2013) by engaging in communities on their own ground through the Locality Care Models, District and Borough or Parish Councils. Page 25 of 37 Final Version Issued 26 July 2017

Feedback from the public has proven to both improve services and outcomes, as well as potentially help spot areas of development. Listening to and using the voice of patients and the public ensures that everyone has equal access to the services we commission and the services are designed to meet the needs of our population. The PAN will contribute to our public outreach/engagement activity and recognises that involving the public in helping the decision making process is critical. PAN Members will be a selection of community stakeholders - including local patients, carers, and public, the voluntary sector, community representatives, partners in District and Borough Councils, Faith groups and Patient Participation Groups. Co-design and collaboration is a fundamental principle, as is shared ownership, with all members taking responsibility for actions and improving outcomes including promotion and awareness of death, dying and services which are available. The group will utilise platforms such as Dying Matters Awareness week to promote public awareness on death and dying. Volunteers and training families and the community Volunteers are an underutilised resource that requires further investigation. Many of the volunteers currently assisting in end of life services have a direct experience in death, dying and bereavement. As such volunteers, with the appropriate training and support could be fundamental to the delivery of public and community understanding alongside providing peer support and guidance to patient carers and their families at a challenging time. Participation Action Network will support promotion of opportunities for community/public training that is available. The Six Ambitions local ambitions will support the development of a delivery timetable outlined in Appendix 2; this will enable the Strategy to develop at pace and in tandem with the emerging Locality Care Models. Page 26 of 37 Final Version Issued 26 July 2017

Conclusion Surrey Downs CCG is committed to improving the quality of experience for patients at the end of their lives and supporting carers and families to have a positive experience with their loved ones. This Strategy demonstrates that Surrey Downs needs to take action to improve end of life care for the patient, carer, and their family. This Strategy identifies objectives to ensure that patients experience improved quality of care at the end of life, families and carers are appropriately supported and resources across health and social care are accessed equitably and effectively utilised. The success against the achievement of these objectives will be regularly monitored, evaluated and reported on. To successfully meet these strategic objectives there must be a focus on integration. To achieve whole system change there must be effective and robust partnership working across Health, Social Care, voluntary and private sectors. Surrey Downs CCGs ethos on care and focus on quality recognisis the value of its collaborative and integrative approach adopted through the Locality Models of care and through collaboration with its partners and residents. We will ensure to nurture these commitments across Health and Social Cate and voluntary and private sectors to ensure that the service remains patient, carer and family centred assuring that end of life care is both caring and inclusive. References: The Department of Health. 2008. The National End of Life care strategy. Available at: https://www.gov.uk/government/publications/end-of-life-care-strategy-promotinghigh-quality-care-for-adults-at-the-end-of-their-life accessed on[ 1st April 2017] The National Council for Palliative Care. 2006.End of Life Care Strategy. Available at: http://www.ncpc.org.uk/sites/default/files/ncpc_eolc_submission.pdf The National Archives.1988. Human Rights Act. Available at: http://www.legislation.gov.uk/ukpga/1998/42/section/4 accessed on [1st of April 2017] The National Council for Palliative Care and National Voices.2015. Every Moment Counts. Available at: http://www.nationalvoices.org.uk/sites/default/files/public/publications/every_mome nt_counts.pdf accessed on [ 1st of April 2017] The Department of Health. 2015.The NHS Constitution. Available at: https://www.gov.uk/government/publications/the-nhs-constitution-for-england accessed on: [1st of April 2017] National Council for Palliative Care.2015. The Road Ahead: Strategy 2015-2018. Available at: http://www.ncpc.org.uk/sites/default/files/ncpc_strategy_2015-2018_final.pdf accessed on [1st April 2017] Public Health Surrey.2015. Surrey Downs Health Profile 2015 available at: http://www.surreydownsccg.nhs.uk/media/144405/sdccg_health_profile_2015.pdf accessed on [1st April 2017] Public Health England.2016. Commissioning for Value Long Term Conditions available at: https://www.england.nhs.uk/rightcare/wpcontent/uploads/sites/40/2016/08/cfvharrow-ltc.pdf Accessed on:[1st of April 2017] The National Palliative Care Partnership.2015. The six Ambitions of Palliative Care, 2015-2020. Available at: http://endoflifecareambitions.org.uk/wp-

content/uploads/2015/09/ambitions-for-palliative-and-end-of-life-care. Accessed on:[ 27th April 2017] The National Archives. 2015. The Care Act 2015. Available at: http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted Accessed on: [April 27, 2017] The National Archives. 2010. Equality Act 2010. Available at: http://www.legislation.gov.uk/ukpga/2010/15/part/2 accessed on [April 27, 2017] Health and Social Care Act, 2012. Available at: http://www.legislation.gov.uk/ukpga/2012/7/contents accessed on: [27th April 2017] Mental Capacity Act,2005. Available at: http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf Accessed on:[ 27th April 2017] Appendices Appendix 1 Integration and Urgent Care Governance Structure showing the End of Life Project Group.