Hospice UK — Written evidence (CHA0130)

1.              About Hospice UK

1.1.              Hospice UK is the national charity for hospice care. We champion and support the work of more than 200 member organisations, which provide hospice care across the UK, so that they can deliver the highest quality of care to people with terminal or life-limiting conditions, and support their families and carers.

2.              About this response

2.1.              Hospice UK welcomes the opportunity to contribute to the Committee’s work. This memorandum draws on the experience of hospices. We have limited our comments to those issues on which we are well placed to contribute.

3.              Background

3.1.              Hospice care began as a community response to the basic human need for dignity and compassion at the end of life. It takes a holistic approach to meeting people’s physical, social, psychological and spiritual needs, and provides support to families and carers before and after bereavement.

3.2.              In 2015 there were 529,655 deaths in England and Wales[1], and the number of people dying is predicted to start rising towards the end of this decade.

3.3.              The final report of the Palliative Care Funding Review estimates that between 70-80 per cent of all people dying would benefit from receiving some palliative care. It also estimates that this means around 355,000 people a year in England need palliative care but each year around 92,000 people are not being reached and so do not access the care they need[2].

3.4.              The increase in the number of older people means that by mid-2037 one in 12 of the population is projected to be aged 80 or over[3].

3.5.              A growing number of older people means an increased demand for care to help with multiple illnesses and chronic conditions common in old age[4].

3.6.              The number of young adults living with life-limiting conditions is also on the increase and there is evidence of growing numbers of young people with highly complex needs moving from children’s services into adult care[5].

4.              The purpose of charities – the contribution of hospices

4.1.              Palliative and end of life care is provided in partnership between the state and the voluntary sector. Hospices are unique among health and social care providers in contributing so significantly to both the provision and funding of palliative and end of life care.

4.2.              It is estimated that the UK currently spends around £4.5 billion to provide current levels of palliative and end of life care[6], although this does not account for unmet needs. The voluntary sector now spends £1 billion a year providing their services[7], and reaches 360,000 people, providing 26 million hours of care, 90 per cent of which is through day care and at home services.

4.3.              On average the NHS in England funds only a third of the expenditure of an adult hospice[8]. Children's hospices are funded differently to adult hospices and on average receive funding equivalent to a fifth of their expenditure from the government[9].

4.4.              Hospices depend on the generosity of their local communities, and fundraised income accounts on average for more than two thirds of the resources required to provide hospice care. Together, hospices in the UK must raise over £2 million each day to fund the care and support they provide.

4.5.              There are 240 organisations providing hospice care in the UK, the majority of which are local charities. Charitable hospices provide 2,570 specialist palliative care beds, representing 80 per cent of the beds within our healthcare system. In contrast, there are just 630 specialist palliative care beds available in the NHS[10].

4.6.              There are at least 125,000 volunteers contributing to the delivery of hospice care in the UK. The equivalent financial value of their contribution is estimated to be £209 million each year[11].

4.7.              Volunteers are vital to the high quality experience of those who receive hospice care. They will play an important role in ensuring the success of hospice care in the future[12].

4.8.              Hospices are major providers of training on end of life care within the health and care system[13], helping to improve care provided in hospitals, care homes and in other settings. They also provide placements for a range of health and care postgraduates and undergraduates.

4.9.              Hospices are well positioned to act as community hubs, empowering and enabling local people, and facilitating the compassionate communities that have been identified by NHS England as key to improving end of life care[14].

5.              The purpose of charities – the impact of the sector

5.1.              According to the National Survey of Bereaved People (VOICES)[15] in England, for those who expressed a preference, 81 per cent of people preferred to die at home while just 3 per cent wanted to die in hospital.

5.2.              According to VOICES, in England in 2015, 22 per cent of people died at home; 6 per cent in hospices; 24 per cent in care homes; and 49 per cent in hospital[16].

5.3.              The quality of care provided by hospices is significantly higher than that provided in hospitals and other care settings[17]. Of respondents who rated care provided by hospices, 76 per cent rated it as excellent. Being shown dignity and respect by staff in the last three months of life was rated highest in hospices – 87 per cent for hospice doctors and 86 per cent for hospice nurses.

5.4.              Hospital is often not appropriate for people’s needs. In 2008, the National Audit Office found that 40 per cent of people who died in one hospital trust had no clinical need to be there, and nearly a quarter of these people had been in hospital for over a month[18].

5.5.              There is an urgent need to improve palliative and end of life care[19]. Around the country, there are numerous examples of hospices working in partnership with hospitals, care homes, primary care and home care services to deliver better care to more people, and helping to reduce the pressure on the NHS. 

5.6.              Hospices pioneer innovative approaches to improve people’s experiences of care. Hospice-led initiatives are helping to:

              Reduce unnecessary admissions to hospital. For example through the placement of hospice nurses in A&E departments to provide immediate palliative assessment and help to avoid admission.

              Facilitate rapid discharge from hospital for people who no longer need to be there. For example, by providing additional inpatient capacity commissioned by the local hospital[20].

              Provide alternative inpatient care for people who are unsuitable for home care.  For example, hospice beds or hospice-supported step down beds in care homes or community hospitals.

              Help provide home based care for people who wish to die at home. For example, hospice at home services that prevent unnecessary admission to hospital, or hospice delivered social care that is available immediately on discharge to support someone at home.

              Deploy telemedicine to support people at home. For example, hospice delivered 24/7 access to palliative care advice and support to patients and professionals[21].

6.              Pressures and opportunities – challenges faced by the sector

Funding

6.1.              In the face of ongoing financial pressures, statutory bodies cannot hope to meet the health and social care needs of local communities on their own.

6.2.              Hospices bring a strong combination of expertise, innovation, local engagement and resources to the table, and a desire to work in partnership to develop and deliver care. In some localities such partnerships are being established and are working very effectively. However these instances are sadly few and far between.

6.3.              NHS and local authority funding for hospice care varies considerably between localities, and a variety of commissioning and contracting practices now exist[22]:

6.4.              More than two-thirds of hospices had their funding from local NHS clinical commissioning groups (CCGs) either frozen or cut in 2014/15. More than 8 in 10 hospices (85%) do not think their hospice is funded fairly and sustainably by the NHS and local authorities.

6.5.              By investing in hospice care, the NHS and government can reduce the number of people in hospital at the end of life with no clinical need or wish to be there, helping to relieve financial pressure on the NHS and the strain on A&E and acute wards.

Commissioning

6.6.              In our most recently published survey of charitable hospices in England[23], we found a significant proportion of hospices experiencing frozen or reduced funding, increasing complexity of commissioning arrangements and overall an absence of proportionality in the contractual arrangements being required by many NHS commissioners.

6.7.              On average, hospices in England have to work with four different local CCG commissioners. To secure funding from CCGs – and manage the various different commissioning and contracting agreements – hospices have to commit resources which are disproportionate to the limited funding contributions they are receiving.

6.8.              Hospice UK believes that there are a number of steps that should be taken by the NHS to make immediate improvements to the commissioning of hospice care. Our recommendations, based on our research around the experience of the hospice sector are that:

6.8.1.              NHS England should ensure that commissioning practices reflect a proportionate approach to commissioning, contracting and monitoring arrangements. Guidance to commissioners and their support teams should be strengthened to give them confidence in using appropriate funding arrangements. For example recognising that the NHS Standard Contract is not always an appropriate tool for arrangements with hospices and other voluntary sector providers. Building on previous guidance and tailored arrangements around the NHS Standard Contract and model grant agreements.

6.8.2.              Local commissioners should seek to engage with partner organisations, including other health and social care commissioners to collaborate (for example through lead commissioner arrangements), to help improve efficiency and better support strategic planning of hospice and palliative care services.

6.8.3.              Local commissioners should use contracting arrangements with hospices which are proportionate to the contribution they are making towards hospice care costs; consistent with NHS England guidance, this should include grant agreements.

Partnership-working

6.9.              Some localities have entered in to partnership arrangements between hospices and the NHS to maximise the impact of the available resources (both statutory and charitable) to deliver better end of life care[24]. These ‘co-commissioning’ arrangements often better reflect the partnership that exists between the NHS and hospices as major funders of care. 

6.10.              For example, St Helena Hospice in North East Essex, has entered into a joint commissioning relationship with their CCG. Believed to be the first arrangement of its kind in the country between a CCG and a hospice it recognises the hospice as a lead provider in the community and a significant funder of services. The relationship aims to utilise the social value benefits of a joint NHS and voluntary sector-led approach to planning for, and meeting, increasing demand for non-acute end of life and palliative care services.

6.11.              The benefits of this approach have included: significant cost savings per annum; the delivery of the local End of Life Care strategy; and enabled a key contribution to the local Keogh Action Plans – e.g. more people being cared for, and dying, in their place of choice; further integration of end of life care pathways; phased reduction in unmet need in the community; and greater patient choice and individualised care.

7.              The role of government – local statutory organisations and end of life care

7.1.              We know that palliative and end of life care in this country can be the best in the world[25]. However, too many reports in recent years have shown that the care experienced by dying people and those closest to them can vary depending on where they live, their particular condition, age or ethnicity.

7.2.              In a health and social care system where decisions about what services are provided, and for whom, are devolved to the local level, local decision-makers and commissioners need to have a clear picture of the needs of people in their areas. Our recent report on how local statutory structures address end of life care needs within their planning and decision-making indicates that they do not have this picture[26].

7.3.              For example, through our freedom of information request we found that:

              1 in 3 (34 per cent) of Health and Wellbeing Boards (HWBs) do not consider the needs of dying people when assessing the health and care needs of their local populations.

              Progress on improving local care and support for people approaching the end of life has stalled; almost 6 in 10 (57 per cent) HWBs do not include the needs of dying people in their key strategies – the same as in 2014.

              More than 1 in 4 (27 per cent) CCGs do not have a strategy for addressing end of life care in their area.

              Over 7 in 10 (71 per cent) CCGs do not have a strategy for children and young people living with life-shortening conditions.

              Children’s palliative and end of life care needs receive much less attention than adults’ needs; 78 per cent of CCGs have a nominated lead for children and young people, compared to 96 per cent for adults.

Our findings show a significant inconsistency in the consideration of adults and children with palliative care needs in the building blocks of health and care planning.

7.4.              Local health and social care leaders should work with the local charitable providers of hospice and palliative care to better understand the needs in their communities. Hospices and other charitable palliative care providers have huge amounts of data – across demographics, activity, and outcomes – which could support Health and Wellbeing Boards (HWBs) and Clinical Commissioning Groups (CCGs) in developing their needs assessments and strategies.

7.5.              All HWBs and CCGs should develop palliative and end of life care strategies. They should do this in a way that brings health, social care and public health systems together in response to the increasingly complex experiences of our ageing population.

7.6.              Improving people’s access to high quality palliative and end of life care will not only lead to better outcomes for people, families and carers, it will also help to address some of the wider structural challenges that our health and care system is facing. For example, equitable provision of hospice care can mean people’s needs are met in a timely way, with appropriate services, rather than having to access inappropriate acute care. This is essential in a period of growing demand for health and social care services.

5 September 2016

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