As summer progresses, the policy environment relevant to families caring for seriously ill children remains active and wide-ranging. The publication of the NHS 10-Year Plan and the conclusion of the government’s multi-year Spending Review mark two major developments with long-term implications for health and care services. But these are far from the only changes we’ve seen in recent months. In this roundup, we take stock of the latest updates, explore what they mean for families, and spotlight key advocacy efforts shaping the future of support.
UK-wide
Spending Review 2025
On Wednesday 11 June, the Chancellor of the Exchequer, Rachel Reeves, announced the outcome of the government’s multi-year Spending Review.
Unlike the annual Autumn Budget, which sets the government’s spending plans for one year, the Spending Review set out the government’s plans for departmental spending for three years until 2028/29, and for capital investment until 2029/30. It also outlined what the Northern Ireland Executive and Scottish and Welsh Governments will receive in block grants for the same period.
Overall, the Chancellor confirmed that total departmental budgets will grow by 2.3% across the Spending Review period. While no explicit references to children’s palliative care were made, there are several announcements that could have an impact on seriously ill children, their families and the services that support them. These include:
- A £29 billion increase per year in real terms to the day-to-day spending of the NHS from 2023/24 to 2028/29, taking the total NHS budget to £226 billion by 2028/29.
- A commitment to reform the current Special Educational Needs and Disabilities (SEND) system, with details to be set out in a White Paper in the autumn.
- £555 million being set aside to reform children’s social care, ensuring families have the right support at the right time.
- A £14.9 billion cash increase for the devolved governments between 2023/24 and 2028/29.
Following the announcement, we issued a reactive statement calling on the government to use the reforms announced by the Chancellor as a platform to meet the funding challenges confronting the children’s palliative care sector. You can read our statement here.
Welfare Reform
Following the Spring Statement, the government introduced the Universal Credit (UC) and Personal Independence Payment (PIP) Bill, aiming to reform key aspects of the welfare system. The bill proposed changes to UC rates and PIP eligibility criteria, prompting significant parliamentary scrutiny.
Prior to the vote at second reading, and following significant criticism from MPs, ministers made several concessions and amended the Bill. These included:
- announcing that a co-produced review of the PIP assessment process will be conducted and led by Minister of State for Social Security and Disability, Sir Stephen Timms MP;
- amending the Bill to ensure the new eligibility requirements for PIP will only apply to new claimants and will not come into force until the PIP assessment review has concluded; and
- ensuring that all existing recipients of the UC health element and new claimants who meet the government’s severe conditions criteria or qualify under the special rules for end of life will see their UC allowances rise at least in line with inflation every year from 2026/27 to 2029/30.
Following these amendments, the bill has passed through both Houses and is now set to receive Royal Assent.
England and Wales
Terminally Ill Adults (End of Life) Bill
Following third reading of the Terminally Ill Adults (End of Life) Bill in the House of Commons, the bill has now progressed to the House of Lords.
According to Hansard Society, Lord Falconer has named Friday 12 September 2025 as the date for the bill’s Second Reading. With Party Conference due to run from Thursday 18 September until Monday 13 October, if the House chooses to agree the second reading, the bill’s committee stage is unlikely to begin until October.
Ahead of second reading, we are urging peers to consider the potential implications of this bill for seriously ill children and young people. Specifically, we are asking them to table key amendments that will ensure vital safeguards are incorporated into the bill.
You can read more about the potential implications of the bill and the amendments we are calling for here.
England
NHS 10-Year Plan published
On 3 July 2025, the UK Government published its long-awaited 10-Year Health Plan for England, outlining a strategic vision for transforming the NHS and wider health system over the next decade.
The Plan is centred around achieving three key shifts in the health system:
- From hospital to community: shifting care closer to home and reducing reliance on hospital-based services.
- From analogue to digital: accelerating the adoption of digital technologies.
- From sickness to prevention: placing greater emphasis on proactive, preventative care.
Throughout the plan, many commitments are made that could have an impact on organisations providing palliative care, and on families caring for seriously ill children and young people. For example, central to the government’s plan is the development of neighbourhood health centres designed to deliver integrated care within communities.
Included within this is a commitment for end of life care to be delivered by neighbourhood health centres, with hospice outreach staff forming part of these teams.
Additionally, there are commitments to provide universal access to personal health budgets to all those who would benefit from 2035, and to develop year of care payments through test and learn approaches.
Despite these commitments, we are concerned that in the whole document, children’s palliative care is not specifically referred to once. Equally, it is concerning that funding for children’s palliative care, including the future of the £26 million NHS England funding stream, is not addressed either.
These omissions raise a number of questions that need answering if the plan is to lead to real improvements in children’s palliative care.
Following the plan’s publication, we issued a reactive statement that can be found here.
Rapid investigation into maternity and neonatal care launched
Prior to the publication of the NHS 10-Year Plan, the Secretary of State for Health and Social Care, Wes Streeting, announced that a national, independent investigation is being launched into maternity and neonatal care. The investigation will seek to address serious, systemic failings in how care is delivered to women, babies and families in England.
This will be a rapid investigation and will have two main parts:
- Urgent reviews of up to 10 NHS trusts by the end of 2025.
A rapid, systemic investigation, reporting by December 2025 to consolidate findings and provide a single set of national recommendations. - A National Maternity and Neonatal Taskforce, chaired by the Minister and including families and experts, will oversee this work and develop a new national action plan to drive improvements.
Alongside the investigation, immediate measures are also being taken. These include:
- Holding underperforming trusts to account via the NHS Chief Executive.
- Introducing a real-time early warning system for safety issues.
- Rolling out best practice standards for maternal health.
- Tackling inequalities with an anti-discrimination programme.
You can read the full written statement here.
A review of the effectiveness of Regulation 9A of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Easy read version launched
The Department of Health and Social Care (DHSC) is conducting a review of the effectiveness of Regulation 9A of The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, one year after it came into force on 6 April 2024.
This regulation sets out the requirements for visiting and accompanying practices in care homes, hospitals and hospices.
As part of the review, DHSC has made available an easy read translation of the Call for Evidence for people to share their views.
This version is designed to be more accessible and is open to all people who may find this format more suitable to respond to ensure that everyone has a chance to share their views on the effectiveness and impacts of Regulation 9A.
DHSC are keen to hear views from patients, care providers and professionals, family members, friends, carers and advocates. As such, the survey will be open for 6 weeks, closing at 11:59 on 26 August. You can respond to the survey here.
This survey follows the standard Call for Evidence that was live from 28 May to 9 July. More information on this can be found here.
Children’s palliative care mentioned in general debate on children’s health
On 10 July, a general debate on children’s health, secured by Dr Simon Opher (Labour MP for Stroud) took place. Ahead of this debate, we briefed MPs and worked with Dame Siobhain McDonagh MP to help her prepare for a longer intervention.
Following this and during the debate, Siobhain drew MPs’ attention to the ongoing variation in children and families’ access to 24/7 end of life care at home, before asking if the government will commit to:
- maintaining and increasing the Children’s Hospice Grant beyond 2025/26;
- launching a proper review of how children’s palliative care is funded and planned; and
- holding ICBs to greater account, to ensure they meet their legal duty to commission this care and report transparently on progress.
Responding to the debate, the minister for public health, Ashley Dalton, recognised the importance of children’s hospices, and confirmed that future funding will be announced in due course.
You can rewatch the debate from 15:51:56 here. A transcript is also available here.
Northern Ireland
O’Dowd and Nesbitt launch public consultation on Baby Loss Certificate Scheme
On Tuesday 17 June, Finance Minister John O’Dowd and Health Minister Mike Nesbitt launched a public consultation seeking views on the proposed Baby Loss Certificate Scheme.
Part of the Deaths, Still-Births and Baby Loss Bill, the scheme would offer certificates to parents who experienced the loss of a baby before 24 weeks of pregnancy.
The consultation is running from 17 June to 12 September 2025 with the scheme expected to be in place by the end of the year. Further information and consultation documents are available on the Department of Finance website.
Archibald announces new proposals to support school leavers with special educational needs
Also on Tuesday 17 June, Economy Minister Dr Caoimhe Archibald announced a series of new proposals in an effort to improve access to education, training and careers support for young people with special educational needs (SEN) after they leave school.
The plans announced include:
- A new Transition Support Service to help school leavers move into further learning.
- Increased investment in accessible provision in further education.
- New legislation to support learners in further education with additional needs.
- Measures to boost access to apprenticeships and higher education for young people with learning disabilities.
- Enhancements to the Careers Service, including tailored software for autistic people and a new inclusive careers portal.
You can read the Minister’s full statement here.
Scotland
Scottish Labour pledges pay boost for hospice doctors and nurses
On 15 July, Scottish Labour deputy leader, Jackie Baillie, pledged that, if elected, the party would ensure hospice-based doctors and nurses in Scotland are paid at NHS levels.
The party says it would invest in Scotland’s hospices to support pay parity for Agenda for Change staff, in an effort to tackle recruitment and retention challenges without risking service cuts.
You can read more here.
Assisted Dying for Terminally Ill Adults (Scotland) Stage 1 report and vote
On Tuesday 13 May, Members of the Scottish Parliament (MSPs) voted to pass Liam McArthur’s bill to legalise assisted dying in Scotland. The vote on the bill’s general principles passed by 70 votes to 56.
This vote follows the publication of the Committee for Health, Social Care and Sport’s Stage 1 report on the bill. Having responded to the written call for evidence last year, we are really pleased to see a number of the concerns we raised reflected in the report. These include:
- The bill’s definition of terminal illness is extremely broad which could lead to ambiguity when assessing the eligibility of young people with life-limiting and life-threatening conditions, whose prognosis is often uncertain.
- There is a need for greater clarity on the skills, experience and training that a professional should have to make the preliminary assessments and in turn, assist someone to die.
- The importance of strengthening the process for assessing capacity.
It is also good to see the Committee acknowledge concerns about the Bill’s potential impact on provider organisations, including children’s hospices and the wider palliative-care sector.
The bill will now proceed to Stage 2 where it will return to the Health, Social Care and Sport Committee for detailed scrutiny. During this stage, any member of the Parliament may lodge amendments to alter the bill.
You can read the Committee’s Stage 1 report here.
Wales
Welsh Conservatives pledge to increase hospice funding
On Saturday 14 June, the Leader of the Welsh Conservatives, Darren Millar, announced the parties’ intention to invest £40 million of additional funding for hospices over the duration of the Senedd term.
This includes a pledge to ringfence funding for Wales’ children’s hospices to meet 50% of their operating costs.
You can read the full article here.
New report by RCPCH shows massive increase in waiting times for children’s community health services across Wales
On Tuesday 17 June, the Royal College of Paediatrics and Child Health (RCPCH) published a new report highlighting the consequences of underinvestment in community healthcare, and the growing waiting lists faced by children and young people across Wales as a result. The report is based on freedom of information data from all health boards.
Key findings from the report include:
- Enormous increases in waiting lists for community paediatrics, with Betsi Cadwaladr seeing a 1016% rise since 2018 and Cardiff a 302% increase.
- Significant rises in waits for autism and ADHD assessments, especially in Hywel Dda and Powys.
- Average waiting times in Swansea have more than doubled since 2020, reaching 80 weeks.
Overall, RCPCH stresses that community child health services are vital for children with complex needs. The College therefore calls on the Welsh Government to deliver on its long-standing ambition of care closer to home by investing in early years support and ensuring adequate staffing across disciplines like community paediatrics, speech and language therapy, and mental health.
Read the full report here.