Together for Short Lives
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A more equitable and sustainable approach to statutory funding in England

Families of children with life-limiting conditions rely on the palliative care provided by the voluntary sector, including children’s hospices. Despite their amazing work – and the pressure they take off the NHS – these lifeline services do not receive enough money from the state. The funding they do receive is patchy and unsustainable. We are calling on local NHS organisations and local authorities to fund children’s palliative care – and on the government and NHS England and NHS Improvement (NHSE/I) to make clear to them that they are responsible for doing so.

Together for Short Lives estimates that the cost of providing palliative care to children and young people amounts to hundreds of millions of pounds a year across the UK. The majority of children’s palliative care is funded by organisations spanning the voluntary sector, the NHS and local government.

While the state funds the vast majority of the children’s palliative care directly provided by the NHS, we believe it is right that it also contributes to the costs incurred by voluntary providers, including children’s hospices. The children’s palliative care provided by these organisations helps ease pressure on the NHS. Children’s hospices, for example, make a crucial contribution to local health economies. In total, children’s hospice charities in England provided active clinical support to an estimated 8,160 babies, children and young people in 2018/19. This is based on a mean of 240 children per children’s hospice charity. This includes an estimated:

  • 5,643 who received respite or short breaks (based on an average of 166 children per children’s hospice charity)
  • 2,775 who received support to manage their symptoms (based on an average of 82 per children’s hospice charity)
  • 3,944 who received children’s hospice care at home (based on an average of 116 per children’s hospice charity)
  • 518 who received end of life care (based on an average of 15 per children’s hospice charity)
  • 2,949 who received bereavement care (emotional and/or psychological support, based on an average of 87 per children’s hospice charity)

Without children’s hospices, the clinical aspects of this care would otherwise have to be provided and paid for in its entirety by the NHS.

Voluntary sector providers bring social value to communities. When local NHS organisations remunerate these charities for the children’s palliative care they provide, the funding is matched and exceeded by charitable donations which also contribute to running services. Local volunteers also help to provide children’s palliative care which are part-funded from statutory sources, further adding value.

There is overwhelming public support to make sure that children with short lives are not shortchanged by the state: 78% of the public think that children’s hospices receive too little funding from statutory sources. The public think that children’s hospices receive 38% of their funding from statutory sources, when in reality they only receive 21%. The public also think that children’s hospices should receive more statutory funding (74%, of their total funding).

In addition to these challenges, NHS-provided children’s palliative care services are being funded neither equitably nor sustainably, from CCGs or directly from the NHSE/I specialised commissioning team. The Disabled Children’s Partnership has identified an annual £434 million deficit in the funding that local authorities in England need to meet the demand for social care for disabled children, including short breaks for respite for seriously ill children.

The National Institute of Health and Care Excellence (NICE) published a resource impact template alongside the guideline on end of life care for infants, children and young people. This tool allows local areas to input their population data and it calculates the overall cost and savings of implementing the new guidelines. Using the total population of children in England, NICE calculate that by investing £12.7million in implementing the guidance, non-cash savings worth £34.7million would be released back into the NHS in England.

What do we know about the way in which the state funds children’s palliative care?

2020/21 saw a fantastic response across society, including government, corporate partners and the public, to make sure our children’s hospices could continue to offer vital care to seriously ill children and families. But, without some of these funding streams in 2021/22, children’s hospices will be pushed to the limits.

In April and May 2021, Together for Short Lives asked children’s hospices across the UK how their funding has changed as a result of the COVID pandemic. We asked what impact this has had on the services they have been able to provide to seriously ill children and their families. We also asked them how they expected this to change in 2021/22.

In 2020/21, average income increased, largely as a result of support from government and the wider state, but behind this, charitable sources of income were badly affected. On average, children’s hospices reported an income of £6,954,324.79 for financial year 2020/21. This was 6 per cent greater than the £6,576,501.24 income they reported for 2019/20.

On average, children’s hospices each received £1,330,050.72 in emergency funding for hospices in England from HM Treasury or from the equivalent schemes in the other UK nations and regions in 2020/21. Other forms of funding, including the UK Government’s Coronavirus Job Retention Scheme and local authority retail grants, provided an average of £1,051,432.50 per children’s hospice in 2020/21. Yet two fifths (40 per cent) of children’s hospices reported that their income had decreased between 2019/20 and 2020/21.

A combination of COVID-related statutory funding schemes coming to an end and the uncertain economic outlook mean that 2021/22 is likely to be much more challenging for children’s hospice income. On average, children’s hospices expect their income to decrease to £5,805,250.72 in 2021/22, a fall of 17 per cent. Over three quarters (77 per cent) expect their income to fall. On average, children’s hospices expect to report a net deficit of £324,307.97 in 2021/22.

Together for Short Lives’ survey also highlighted that local authority funding for children’s hospices in England is not enough to make sure all seriously ill children and their families can access the breaks they desperately need.

Despite the welcome 29 per cent increase in local authority funding for children’s hospices between 2019/20 and 2020/21, it was still a small proportion (4 per cent) of the charitable costs incurred by children’s hospices in 2020/21. It is also small considering the proportion of children’s hospice activity that short breaks for respite represents – and the fact that local authorities have a legal duty to ensure disabled children can access short breaks.

What is the UK Government and NHSE/I doing to improve the way in which children’s palliative care in England is funded by the state?

There have been positive developments in NHS funding for children’s palliative care services in the past two years. In July 2019, NHSE/I decided to increase the Children’s Hospice Grant to £25 million by 2023/24 and ringfence this money specifically be for children’s hospices. The planned Children’s Hospice Grant amounts during this period will be:

  • 2020/21: £15 million
  • 2021/22: £17 million
  • 2022/23: £21 million
  • 2023/24: £25 million.

In addition, the NHS Long Term Plan commits NHSE/I to match up to £7 million of CCG funding for children’s palliative care, including children’s hospice services, by 2023/24. The funding amounts during this period will be:

  • 2020/21: £2 million
  • 2021/22: £3 million
  • 2022/23: £5 million
  • 2023/24: £7 million.

In August 2019, the Prime Minister announced that the government would allocate £25 million to CCGs to distribute to palliative care services for children and adults – including hospices – during 2019/20.

In April 2020, the Chancellor of the Exchequer decided to provide up to £200 million to enable the NHS to buy capacity from children’s and adults hospices during the first phde of the COVID-19 pandemic. This was so hospices could facilitate early discharges from hospitals and prevent admissions by providing palliative care, including end of life care, in hospices and in people’s homes.

Subsequently – and in response to COVID-19 Wave 2 and winter pressures – the government announced that a variation of the first hospice grant agreement would provide up to £125m grant funding to Care Quality Commission (CQC) registered charitable hospices in England for November 2020 – March 2021. This would be to secure and increase NHS capacity. These arrangements consider business as usual levels of funding received by hospices from CCGs, which CCGs are expected to continue.

In contrast, this government has not provided ringfenced funding for the social care elements of children’s palliative care. The most recent package allocated by the UK Government to local councils specially for the purpose of funding short breaks was in December 2010. This is when the government committed £800 million to make sure local authorities could meet their legal duties under the short break regulations.

In addition to providing the Children’s Hospice Grant, NHSE/I has developed and published a children’s palliative care funding currency. In simple terms, this a formula which describes for local planners and funders of healthcare (known as clinical commissioning groups, or CCGs) how the cost of providing children’s palliative care varies depending on a number of factors. The currency provides official recognition that the NHS has a role in funding children’s palliative care in England, and could help CCGs to better understand their responsibilities for supporting these vital services. The guide also usefully sets out:

  • details of the currency formula model and how it helps commissioners to pay for local children’s palliative care services
  • the data needed to use the currency formulas
  • an Excel template to help collect data
  • tools to support providers to collect and validate data
  • advice on sharing information with commissioners.

The guide also recommends that while bereavement counselling does not form part of the currency model, commissioners should think about the excellent value that these services provide when they commission services.

What would Together for Short Lives like to happen?

  1. We are calling on HM Treasury to fill the £434 million disabled children’s social care funding gap in England by creating an annual ring-fenced disabled children’s grant. From this, local authorities would be able to make an equitable and sustainable funding contribution to short breaks for seriously ill children.
  2. The government should also establish a £41 million Disabled Children’s Innovation Fund in England. This would provide financial backing to organisations delivering ground-breaking support and approaches in early intervention, such as short breaks for respite.
  3. The growth in the Children’s Hospice Grant is helping to make NHS funding for children’s hospices more equitable and sustainable. But we call on the government and NHS England and NHS Improvement to hold NHS CCGs, local authorities and integrated care systems (ICSs) to greater account for the way in which they fund children’s palliative care services, including children’s hospices.
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