A more 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 (NHSE) to make clear to them that they are responsible for doing so.

Funding is one of the most significant barriers to 24/7 children’s palliative care being provided at home in every part of England. Based on the specialist and core professionals that NICE state should comprise children’s palliative care multidisciplinary teams – and the population that needs access to them – we estimate that the NHS should spend approximately £385million every year to meet this standard .

There have been positive developments in NHS funding for children’s palliative care services in recent years. In July 2019, NHSE decided to increase the Children’s Hospice Grant to £25million by 2023/24 and ringfence this money specifically for children’s hospices. Through the hospice at home services they provide, often in collaboration with NHS community teams, children’s hospices can play an important role in making sure 24/7 palliative care is available to children who need it. The planned Children’s Hospice Grant amounts during this period are:

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

In addition, the NHS Long Term Plan commits NHSE to match up to £7million of CCG funding for children’s palliative care, including children’s hospice services, by 2023/24. The money is available to NHS and voluntary sector providers and is already being used to fund some new and existing specialist children’s palliative care services. The funding amounts during this period are:

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

In 2022/23, NHSE funded a dedicated children and young people’s palliative care lead in each of the seven palliative and end of life care strategic clinical network (SCN) regions in England.

In April 2020, the government’s Emergency Coronavirus Fund for charities included a commitment of £200million for hospices, including children’s hospices. In November 2020, the government announced that it would provide an additional £205million of support for the NHS for the winter 2020/21. This included up to £125million to secure additional hospice capacity and up to £148million for the period December 2021-March 2022 to secure and increase NHS capacity to enable hospital discharge.

Despite this progress – and the money which we estimate that the NHS is also spending on funding specialist paediatric palliative medicine consultants, community children’s nurses and (through individual CCGs) children’s hospices – we still approximate that the NHS will be spending only £84million every year on children’s palliative care by 2023/24 . We therefore estimate that there is a £301million gap in NHS spending on children’s palliative care in 2023/24.

Our mapping shows that, in some areas, standards are being met without commissioned service specifications being in place. This suggests that the costs of some children’s palliative care services – particularly some specialist services provided by NHS acute trusts – are being absorbed by the NHS trusts themselves or funded from charitable sources without being fully reimbursed by CCGs.

It is not right that in some areas, the sustainability of core and specialist care for seriously ill children and their families depends on the generosity of individual donors, sales made in charity shops and the success of fundraising events. ICBs should have access to the financial resources to meet their legal duty to commission palliative care for children and young people.

We are also concerned that NHSE has only committed to the Children’s Hospice Grant until the end of 2023/24. The grant remains vital to the sustainability of children’s hospices. It underpins their ability to work with their statutory sector partners to ensure that seriously ill children can exercise choice over how and where they receive palliative care.

As the government increases NHS funding by a total of £10.8billion in the period to 2024/25 , we believe the NHS should fund the lifeline 24/7 palliative care they need regardless of whether it is provided in hospitals, at home and in children’s hospices:

• We call on the government to ensure that the NHS invests an additional £301million in children’s palliative in England every year to meet the gap.
• We call on the government to ensure that NHSE maintains existing children’s palliative care funding streams for the long term as a priority, beyond 2023/24, including match funding and the Children’s Hospice Grant.
• We call on NHSE to model for each ICB how much it should be spending on children’s palliative care – and then hold them to account for the extent to which they spend money for this purpose.

We recommend the following action to make sure that children’s hospice care is in England is sustainable for the long-term – and funded on a more equitable basis:

Children’s hospice funding in England

Children’s hospices across England are providing more and more complex care and support to children and young people with life-limiting or life-threatening conditions, offering a lifeline to their families and taking pressure away from the NHS. The demand for children’s hospice is increasing; their costs are rising rapidly as inflation and the price of recruiting and retaining skilled and experienced staff soars.

Children’s hospices have warned that if they are unable to access the Children’s Hospice Grant as a centrally-distributed grant from NHSE in 2024/25, they will be forced to cut vital care and support for children and families.

Local NHS funding for children’s hospices from integrated care boards (ICBs) in England is patchy and unsustainable and fell on average between 2021/22 and 2022/23.

In April 2023, NHSE wrote to children’s hospices to state that 2023/24 is the final year of the Children’s Hospice Grant, which has been a vital source of funding for services to children and families since 2006/7.

However, following a campaign by Together for Short Lives, children’s hospices and local MPs, Minister of State for Social Care Helen Whately has now gone on record to state that NHSE has confirmed that it will be renewing the grant for 2024/25, once again allocating £25 million grant funding for children’s hospices. However, the minister states that NHSE has not yet confirmed the funding mechanism or individual allocations.

Together for Short Lives understands that officials are strongly considering an option whereby the funding is distributed to integrated care boards (ICBs) to allocate to children’s hospices.

This approach could have serious consequences for the sustainability of children’s hospices and undermine support for children and young people with life-limiting conditions: ICBs are yet mature enough to become fully responsible for providing all NHS funding to these crucial services.

In the past, even when children’s palliative care funding has been available for clinical commissioning groups (CCGs) and ICBs from the UK Government and NHSE, such as the NHS Long Term Plan children’s palliative care match funding, not all CCGs – or subsequently ICBs – have chosen to access it.

The current way in which NHSE distributes the Children’s Hospice Grant means that money intended for children’s hospices goes directly to children’s hospices, until ICBs have matured and can plan and commission these services effectively. It is also the most cost-effective means of distributing the funding.

We recommend the following action to make sure that children’s hospice care is in England is sustainable for the long-term – and funded on a more equitable basis:

1. Protect and extend the NHSE Children’s Hospice Grant: with patchy local NHS funding and the negative experience that some children’s hospices have reported in trying to access the NHS Long Term Plan match funding and £25 million non-recurring funding in 2019/20, we call on ministers and officials to maintain the Children’s Hospice Grant as a ringfenced, centrally distributed funding stream from NHSE. This will make sure that NHS funding meant for children’s hospices reaches children’s hospices.
2. Hold ICBs to account: the Secretary of State for Health and Social Care to use their powers in the Health and Care Act 2022 to direct NHSE to make sure that all seriously ill children in England and their families should be able to choose to receive palliative care from children’s hospices, if it is in their best interests. This should build on the legal duty on ICBs in the Health and Care Act to commission palliative care as they consider appropriate for meeting the reasonable requirements of the people for whom they are responsible.
3. Local and regional action: ICBs should take our findings into account as they determine the health and healthcare needs of their population. They should commission children’s hospice and palliative care services in a way which meets the NICE standards. NHSE should regularly monitor the extent to which ICPs and ICBs do this through the new strategic clinical networks (SCNs) – and hold them to account if they fail to do so.
4. Government funding for short breaks: HM Treasury should meet the annual £573 million funding gap in social care for disabled children in England identified by the Disabled Children’s Partnership; local authorities could use this funding to make sure that short breaks for respite for families of seriously ill children, including those provided by children’s hospices, are sustainable for the long-term.

If government, NHSE and ICBs fail to take this action, seriously ill children and families’ access to crucial hospice and palliative care services like end of life care and short breaks could be put at risk. Seriously ill children do not have time to wait for hospices to receive this reassurance.

You can find out how children’s hospices are funded by the state in Northern Ireland, Scotland and Wales from our other policy pages.