With the right support, seriously ill children and their families can experience moments of happiness and joy, creating memories that will last forever. But for many, it’s a lonely and isolating experience with many struggling in a system that doesn’t meet their uniquely challenging needs.
Across the UK, these families’ access to sustainable, high quality children’s palliative care depends on where they live. This is reducing their choice and control, is causing unnecessary and unplanned emergency admissions to hospital, and means that too few families can receive care at home or at a children’s hospice if that is where they wish to be.
Furthermore, the current postcode lottery in access to children’s palliative care is a threat to the shifts that the Government wants to achieve in healthcare in England from hospitals to the community and from treatment to prevention.
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; while the £26 million of NHS England (NHSE) funding for children’s hospices and £100 million for both adults and children’s hospices represent good news, they are only short-term solutions, leaving great uncertainty about funding that will be available beyond 2025/26.
- Furthermore, we are concerned about the impact that the increase in employer National Insurance Contributions (ENICs) will have on non-hospice charitable organisations providing children’s palliative care, such as Rainbow Trust Children’s Charity, who estimate an additional cost of £90,000 a year.
Recommendations for the Spending Review
To improve outcomes for seriously ill children and their families, and to achieve the Government’s key shifts, we call on HM Treasury to do the following:
1. NHS funding: Review the way in which children’s palliative care is funded, fill the £295 million annual gap in NHS spending on children’s palliative care in 2024/25 and commit to ringfencing and centrally distributing the £26 million of NHS England funding for children’s hospices for 2025/26, and ensure this funding is maintained and increased by at least the rate of inflation for years beyond 2025/26.
2. Workforce: 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.
3. Children’s social care funding: 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.
4. 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; in November 2020, the Social Security Advisory Committee recommended that the government consider extending the higher rate disability living allowance (DLA) mobility component to children under the age of three.
5. 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.
6. 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.
7. Give all bereaved parents who need it paid time away from work if their child dies:
- Enable Her Majesty’s Revenue and Customs (HMRC) to offer more flexible, daily payments so that parent carers are not forced to take bereavement leave in one-week blocks.
- Extend statutory parental leave and payments to self-employed people.
- Enable parent carers who are bereaved of young people with life-limiting conditions up to the age of 25 to be able to access parental leave and payments.
8. 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.