As we head into spring, the policy landscape for families caring for seriously ill children remains as dynamic as ever. From changes in NHS funding and new government consultations to important debates in Parliament, there’s been a steady stream of developments shaping the support that families caring for seriously ill children rely on. In this roundup, we take stock of the latest updates, highlight key advocacy efforts, and look ahead to what’s coming next.
UK-wide:
Spring Statement 2025: Changes to welfare benefits and open consultation on health and disability benefits reform
In her Spring Statement on Wednesday 26 March, the Chancellor of the Exchequer, Rachel Reeves announced significant changes to disability-related welfare support. Among these changes is a decision to freeze the Universal Credit (UC) health element for existing claimants until 2029/30. For new claimants, it will be reduced to £50 per week in 2026/27 and then frozen until 2029/30.
This follows a proposal announced previously to delay access to the UC health element until the age of 22
According to the Government’s impact assessment, by 2029/30, these reforms will result in an additional 250,000 people across the UK, including 50,000 children, living in relative poverty after housing costs, compared to previous projections.
Alongside this, the Department for Work and Pensions (DWP) has launched a UK-wide public consultation: Pathways to Work: Reforming Benefits and Support to Get Britain Working, open until 30 June 2025.
Open to the public, DWP is especially keen to hear from disabled people, those with health conditions, and organisations that support them across England, Scotland and Wales. While social security is devolved in Northern Ireland, responses are still welcome and will be shared with the Department for Communities. You can respond here.
England
Still time to help shape the NHS 10-Year Plan
The Government is continuing to consult on a new 10-year plan for the NHS, which will set out a long term vision for the health service.
There are still several ways outlined on the Change NHS platform for families, professionals and the wider public to get involved.
With the final plan expected to be published in June 2025, now is a crucial time for families, professionals, and the public to make their voices heard. Afterall, every response increases the chance that children’s palliative care will be prioritised in the final plan.
Help us improve the Terminally Ill Adults (End of Life) Bill
On 16 May 2025, the Terminally Ill Adults (End of Life) Bill will return to the whole House of Commons for its report stage. This is an opportunity for MPs to debate, scrutinise and improve the Bill.
Having already undergone scrutiny during the committee stage, several changes have been made to the Bill. These include replacing High Court sign-off with a panel of experts (including a psychiatrist and social worker) and extending the implementation deadline to 2029.
While the Bill’s focus is on adults, we are concerned about its potential implications for seriously ill children, young people, their families, and the professionals and services who support them.
To this end, we have prepared a series of amendments to make the Bill safer for young terminally ill adults, and to ensure families and professionals are equipped with the skills and guidance needed for difficult end of life conversations if assisted death is available.
With the report stage approaching, now is the time to act. You can help by writing to your MP today and asking them to support our amendments. You can do this here.
Children’s hospice funding update – 2025/26
In December 2024, the Government confirmed that £26 million of NHS England (NHSE) funding (formerly known as the Children’s Hospice Grant) will be made available in 2025/26. More recently, the Government has confirmed that this funding will again be disseminated by integrated care boards (ICBs).
To avoid delays like those experienced in 2024/25, NHSE has developed a new assurance system with specific steps and deadlines to ensure the funding reaches children’s hospices in a timely manner. These include:
- Regular oversight sessions with ICBs, regional teams, and hospices;
- a hard deadline in quarter one for ICBs to make payments; and
- escalation processes to ensure hospices receive funds on time if an ICB misses the deadline.
While we are disappointed that the Department of Health and Social Care and NHSE have not fully implemented the call we made for the grant to be distributed centrally, we are pleased that they have listened to our concerns and have acted to try to make sure ICBs pay allocations to children’s hospices much more quickly than has been the case in 2024/25.
The Commission on Palliative and End of Life Care
On Thursday 3 April, the Commission on Palliative and End of Life Care held an oral evidence session specifically on children’s services.
During the session, our Head of External Affairs, James Cooper gave evidence about the current challenges facing the children’s palliative care sector and the action that is needed from government.
In addition to giving oral evidence, we have also provided written evidence highlighting the postcode lottery in children and families’ access to 24/7 end of life care at home and the urgent need for action to address workforce shortages, funding shortfalls and the lack of accountability among local NHS bodies.
An interim report is expected in the coming weeks, with a full report due later this spring. More details about the Commission are available online here.
Health and Social Care Committee expert panel evaluation on the state of palliative care in England
The Health and Social Care Committee, led by Layla Moran MP, and the Committee’s Expert Panel, chaired by Professor Dame Jane Dacre, will be conducting an independent evaluation of the state of palliative care.
The evaluation will result in a published report that will focus on nine ‘statements of intention’ across four broad policy areas:
- Commissioning of palliative and end of life care in England;
- Delivery of palliative and end of life care in England;
- Shifting to community; and
- Workforce, education, and training.
As part of this evaluation, we have provided written evidence echoing the findings from our new report, ‘Built to Last: The state of children’s palliative care in 2025’.
Northern Ireland
Progress on Baby Loss Certificate Scheme in Northern Ireland
On 25 March 2025, the Finance Minister, John O’Dowd, and the Health Minister, Mike Nesbitt welcomed the initial steps that have been taken to introduce a Baby Loss Certificate Scheme in Northern Ireland.
The Deaths, Still-Births and Baby Loss Bill has now been formally introduced to the Northern Ireland Assembly. Under current legislation, only the death of a baby after 24 weeks of pregnancy is officially recognised. However, under the new scheme, parents who experience a loss before 24 weeks will be allowed to receive formal recognition of their baby’s life.
This development comes as over 100,000 baby loss certificates have now been issued in England.
Wales
Welsh Government announces additional £5.5 million of funding for hospices
In April, the Welsh Government announced that they would provide additional funding worth £5.5 million to support Wales’ 12 commissioned hospices, including the two children’s hospices.
The one-off cash injection, which is in addition to the £3 million uplift in recurrent funding announced in the 2025/26 budget, will help the children’s hospices manage growing financial pressures and cover some of the historic rising costs of their care workforce.
As the number of children with life-limiting conditions, and the cost of recruiting and retaining skilled staff continues to rise, it is vital that Welsh ministers now work with Tŷ Hafan and Tŷ Gobaith to put children’s hospice care in Wales on a sustainable financial footing for the future.