Surrey Downs Clinical Commissioning Group End of Life Care Strategy
End of life care strategy2017/18 – 2020/21
May 2017
Page 22 of 37 Final Version Issued 26 July 2017
Surrey Downs Clinical Commissioning Group End of Life Care Strategy
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
Equality statement:
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 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
· 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 high-quality 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)
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.
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.
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 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 CCGNumber of Deaths
Gender / Place of Death / < 64 Years / 65-69 / 70-74 / 75-79 / 80-84 / 85+ / Grand Total
Males / 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
Females / 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 / Place of Death / < 64 Years / 65-69 / 70-74 / 75-79 / 80-84 / 85+ / Grand Total
Males / 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%
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.