As we move into the new year, the policy landscape affecting families caring for seriously ill children is continuing to shift. Over the past few months, we have witnessed a flurry of important developments, from government consultations to funding decisions. In this roundup, we’ll explore the latest policy changes, ongoing advocacy efforts, and what they mean for families.
The Autumn Budget and its implications
On 30 October 2024, the Chancellor of the Exchequer, Rachel Reeves, delivered the Labour Government’s first Budget of this parliamentary term.
Included within the Budget were several measures that have potential to improve the lives of seriously ill children. These include a £1 billion uplift for special educational needs and disabilities (SEND) services, and an additional £600 million of new social care funding.
Despite these encouraging inclusions, the Budget also committed to increasing the rate of employer National Insurance contributions (ENICs) from 13.8% to 15% from April 2025. With no exemptions for charities or hospices, this decision will significantly affect the costs that organisations incur in providing children’s palliative care.
For children’s hospices, we estimate that this tax rise will increase their charitable expenditure (the costs incurred in providing children’s palliative care) by an average of £140,000 per hospice. This equates to a sector-wide increase of £4.9 million.
We are also deeply concerned about the impact this uplift could have on non-hospice charitable organisations, such as Rainbow Trust Children’s Charity. According to Rainbow Trust, the increase in ENICs will cost the charity an additional £90,000 each year – which from a direct cost perspective is enough to support around 75 families.
Have your say on the future of healthcare in England
In July 2024, the Secretary of State for Health and Social Care commissioned Lord Darzi to conduct an immediate and independent investigation of the NHS.
Published in September, Lord Darzi’s report highlighted many urgent issues. In particular, the report noted the increasing prevalence of the number of children and young people with life-limiting and life-threatening conditions, and the fact that children face severe delays in accessing community and mental health services.
Following the report, the Government launched a consultation on a new 10-Year Plan for the NHS, inviting the public to share their experiences and ideas for the future. Through this consultation, the Government has been seeking views on three key shifts:
- From hospital to community.
- From analogue to digital.
- From sickness to prevention.
Whilst the organisational consultation has now closed, there are still several ways outlined on the Change NHS platform for families, professionals and the wider public to get involved.
Given the opportunity that this consultation presents to influence the future of healthcare in England, and the emphasis the Government is placing on the importance of public input, we encourage everyone to take part. Afterall, each response increases the likelihood of tangible action in children’s palliative care being committed to in the NHS 10-Year Plan.
The Commission on Palliative and End of Life Care
In December 2024, the Commission on Palliative and End of Life Care was launched, in an effort to develop actionable solutions to ensure every adult, child and family can access the care and support they need, no matter where they live.
Spearheaded by Rachel Maskell MP, the Commission has launched a call for written evidence and is currently holding a series of oral evidence sessions, with a specific session on children’s palliative care planned for 3 April.
These sessions provide a key platform for professionals and advocates to give evidence about the key challenges confronting the sector and the actions that should be taken.
With the call for written evidence still open, we encourage everyone to feed in and ensure your voice is heard. The Commission is particularly interested to hear from:
- Clinicians, commissioners and providers.
- Academics, researchers and others.
- Patients, families and carers.
It is hoped that by gathering sufficient evidence, a report can then be produced towards the end of Spring, which will include recommendations for the Government, NHS and others.
Assisted dying in the UK Parliament
On 29 November 2024, MPs voted to pass Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill, which would legalise assisted dying for terminally ill adults, at second reading.
Together for Short Lives does not have a single agreed view about the ethical or moral philosophical basis for assisted dying or assisted suicide. We represent those who support the general purpose, some who oppose it and some who are uncertain.
Although the Bill’s focus being 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. If the Bill is to progress further, then it is crucial that these implications are fully considered and that appropriate safeguards are put in place, whilst also ensuring young people still have the essential ability to choose their own care.
To this end, we have drafted a series of amendments to the Bill and are urging MPs to table our amendments to ensure sufficient safeguards are incorporated.
Children’s Hospice Funding Update – 2025/26
On 19 December 2024, the UK Government formally announced a significant investment in hospice care in England. This includes:
- £26 million of NHS England funding (formerly known as the Children’s Hospice Grant) for children’s hospices in 2025/26.
- An additional £100 million in capital funding for all children’s and adults’ hospices in England this year and next, enabling improvements in facilities, IT systems, and outdoor spaces to enhance palliative and end of life care.
This funding is very welcome. However, we acknowledge that it is a further one-year solution, and that we still need a longer-term commitment to sustainable funding for children’s palliative services, in hospitals, children’s hospices and in the community, across the voluntary and statutory sector.
Additionally, this funding is only for hospices. Non-hospice charitable organisations will be significantly affected by the increase in employer National Insurance Contributions, however, it remains to be seen what, if any, support will be made available to them.
Our engagement with the UK Government
On Monday 3 February, we met with Stephen Kinnock, Minister of State for Care and his officials alongside representatives from Hospice UK, MacMillan, Marie Curie and Sue Ryder to discuss challenges facing the palliative care sector.
In the meeting, the Minister reaffirmed his commitment to identifying and removing stress points in palliative and end of life care across England. He emphasised that he never wants to see a repeat of the situation in December, where palliative care services were left uncertain about their funding just three months before the start of the next financial year.
To this end, officials at the Department of Health and Social Care (DHSC) and NHS England (NHSE) have been tasked with developing a clear funding plan for 2026/27 by the autumn. The plan will define high quality palliative care, and outline how it will be funded and delivered.
It was also confirmed that the NHS 10-Year Plan, due in May, is likely to outline a long-term strategy for palliative and end of life care, followed by the Government’s multi-year Spending Review in June, which will set broader NHS funding priorities.
While uncertainties remain, these commitments signal progress toward better palliative care planning and funding. More details will emerge in the coming months, and we will continue advocating for children and families requiring palliative care.
The Scottish Budget
On Wednesday 4 December, Finance Secretary, Shona Robison delivered the Scottish Budget. Within the Budget is a commitment to provide £4 million for the hospice sector and from 2025/26, to align the support provided for pay uplifts in the Hospice sector to the outcomes of the NHS Agenda for Change negotiations.
We join CHAS (Children’s Hospices Across Scotland) in strongly welcoming the Scottish Government commitment to link hospice funding to NHS pay awards from next year, but urgent help is also needed right now.
The crisis in hospice funding has been caused by soaring NHS pay awards over many years. The underlying gap is much greater than the additional sums proposed in the draft budget so must be a key focus for MSPs from all parties.
On pay parity, much detailed work is needed to get the baseline right ahead of next year. This requires focused engagement between hospices and civil servants and inevitably some in-year support.
Scottish hospices also face over £2.5m of additional National Insurance contributions next year. If the Scottish Government intend to cover these costs in the NHS using Barnett consequentials, they should do so in hospices too.
The Welsh Budget
On Tuesday 10 December, Mark Drakeford MS, Cabinet Secretary for Finance and Welsh Language published the Welsh Government’s Draft Budget for 2025-26.
Alongside a significant funding boost for the NHS in Wales, the Budget commits to providing £3 million to support hospices in 2025/26 on a recurring basis.
Unfortunately, there is nothing in the Budget that indicates additional support will be provided to help hospices with the rise in employer National Insurance Contributions nor the knock-on effect of the 2025/26 pay award for the NHS.
Help shape the new service specification for palliative and end of life care in Wales
The National Service Specification for Palliative and End of Life Care (PEoLC) aims to ensure that children, young people, and families facing life-limiting conditions receive high-quality, person-centred care wherever they live.
Developed by the National Programme for Palliative and End of Life Care in collaboration with key stakeholders, a consultation was launched earlier this year to ensure the specification reflects the needs of those it serves. However, the consultation has now been temporarily paused.
Before this pause, the Programme team expressed a particular interest in seeking feedback from the following:
- Healthcare professionals.
- Voluntary organisations.
- Statutory bodies.
- Parents, carers, and those with lived experience.
We therefore encourage everyone to monitor the consultation process and be ready to respond when the consultation resumes. You can monitor the process here.