Thousands of families whose children need palliative care face a postcode lottery as to whether they receive it. This is reducing their choice and control and is causing unnecessary and unplanned emergency admissions to hospital among children and young people with life-limiting or life-threatening conditions, some of whom prefer to access palliative care at home.
Key Issues
- Only a third of local areas in England are meeting the required standard for 24/7 end of life care for children at home.
- There is an estimated £295 million funding gap for children’s palliative care services; if NHS England does not commit to continuing £25 million ringfenced funding for children’s hospices in 2025/26, they will be forced to cut lifeline services.
- There are significant shortages in the children’s palliative care workforce.
Recommendations for the Spending Review
We call on HM Treasury to do the following:
- Review the way in which children’s palliative care is funded and fill the £295 million annual gap in NHS spending on children’s palliative care in 2024/25.
- Fill the £2.4 million annual funding gap in GRID and special interest (SPIN) training for palliative care for paediatric consultants – in addition to other funding gaps in educating and training other professionals, including community children’s nurses.
- Fund lifeline voluntary sector providers in England – including children’s hospices – equitably and sustainably for the long-term as their costs increase. In England, this should include a commitment to maintaining £25 million as a ringfenced, centrally distributed NHS England grant for children’s hospices beyond 2024/25 which increases by at least the rate of inflation.
- Meet the annual £573 million funding gap in funding for social care for disabled children in England. 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, were sustainable for the long-term.
- Mobility benefits: make sure that seriously ill children and their families receive the financial support they need from the benefits system. Children under the age of three who rely on bulky medical equipment need access to benefits to meet their mobility needs for the long-term.
- Support with energy costs: make sure that seriously ill children and their families receive sustainable energy assistance payments. The government should explore the idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability. We also ask for better access to rebate schemes so that families of children and young people who need palliative care are not paying for the cost of running medical devices.
- Make sure that families of seriously ill children have access to childcare: the government should make additional resources available to local authorities to ensure disabled children can access childcare and early years education.
- Give all bereaved parents who need it paid time away from work if their child dies.
- Reduce the financial cost to families when a child dies: the government should make sure that parents who have been full-time carers of a child who has died automatically receive Limited Capability for Work and Work Related Activities (LCWRA) for the first 12 months following the child’s death, if they are in receipt of Universal Credit. The government should also increase the amount of money available for child funeral expenses through the funeral payment in line with funeral cost inflation.
Read our full representation here.