Leaders’ Briefing
Keeping you up to date on sector news and our work
Key updates
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 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 shared a briefing with our members, identifying the key announcements that are relevant to the sector. You can access this briefing here.
We also 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.
England and Wales
Update on the Terminally Ill Adults (End of Life) Bill: Report Stage and Third Reading
On Friday 20 June, MPs voted to pass the Terminally Ill Adults (End of Life) Bill at third reading by 314 votes to 291. The Bill will now proceed to the House of Lords where it will undergo further scrutiny.
We are disappointed that our proposed amendments, which would have incorporated additional safeguarding measures for seriously ill children, young people, their families and the professionals and services that support them, have not been tabled. We are therefore now looking ahead to the stages in the House of Lords where we will continue to work to ensure the Bill is strengthened in this regard.
Prior to the vote, MPs supported an important amendment tabled by Munira Wilson MP. This requires the Secretary of State for Health and Social Care to review the availability, quality and distribution of palliative and end of life care services within one year of the Act being passed.
We are pleased that MPs voted in support of this amendment and are calling for this review to include children’s palliative care.
Other particularly relevant amendments agreed during the report stage include:
- Opt-out provision for professionals: Permits health and care professionals to opt-out of any involvement in assisted dying.
- Restriction on raising the subject with those under the age of 18: Prohibits any professional from raising the subject of assisted dying with a person under the age of 18.
You can read our full reaction to the outcome of third reading here.
England
Progress on the consolidation of integrated care boards (ICBs)
Earlier in June, the Health Service Journal (HSJ) reported that plans are progressing to consolidate integrated care boards (ICBs), reducing the current 42 ICBs to 27 clusters. Evidently, once clustering is complete, around a third of ICBs—primarily those in London, the North West, the North East and Yorkshire—will remain independent, with their existing boundaries unchanged.
With clustering and restructuring proposals submitted to NHS England (NHSE) at the end of May, HSJ notes that formal mergers are expected to take place by April 2026 or by April 2027 at the latest. However, there is currently no confirmed timeline for appointing new leaders or managing redundancies, with NHSE aiming to clarify this in the coming weeks.
This change comes as ICBs have been tasked with halving their running costs. Specifically, ICBs are being required to run at £18.76 per head of population cap set by NHSE.
Ministers sign off capital boost for ‘high-performing’ systems
The Health Service Journal (HSJ) also recently reported that NHS England (NHSE) will allow top-performing integrated care systems (ICSs) to spend up to £25 million above their usual capital limits across 2025/26 and 2026/27, using their cash reserves.
Additionally, trusts that delivered a surplus in 2024/25 will also be able to reinvest it as capital over the next two years.
HSJ notes that eligibility will be based on a new performance assessment framework due to be finalised in July. However, the capital guidance has indicated that only systems in the top two tiers of the upcoming framework, and those that broke-even or delivered surpluses last year, would be eligible.
According to an NHSE spokesperson, “systems that demonstrate strong financial management and delivery will benefit from greater freedoms, while those falling short will receive additional scrutiny and support to recover.”
A review of the effectiveness of Regulation 9A of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
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 launched a call for evidence, seeking feedback on people’s experiences of visiting and accompaniment by family members, friends, advocates, carers, volunteers, or others who provide support or companionship—excluding professional visitors such as care workers.
In this context, ‘accompanying’ refers specifically to individuals who attend non-overnight appointments in hospitals or hospices alongside the person receiving care.
The call for evidence seeks views on:
- Experiences before the regulation was enacted
- The overall impact and effectiveness of the regulation
- How concerns are raised under the regulation
- The impact on both individuals and care providers
Responses are welcome from both individuals and organisations with submissions being treated as anonymous.
The call for evidence will close at 11:59 on 9 July 2025. You can respond 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
Read the Minister’s full statement here.
Scotland
Health and Social Care Service Renewal Framework
The Scottish Government have published the Health and Social Care Service Renewal Framework (SRF) setting out a strategic plan to renew Scotland’s health and social care system over the next ten years.
Building on existing plans such as the Operational Improvement Plan and the Population Health Framework, the SRF aims to deliver a vision of a healthier, longer-living population despite growing financial and demographic pressures.
Included within the SRF are five key principles for renewal:
- Prevention – across all stages of care
- People – care designed around individuals
- Community – more care in the community rather than a hospital-focused model
- Population – planning driven by need, not geography
- Digital – reflecting societal expectations and system needs
The SRF also sets out the following priority areas for change:
- Strengthening prevention and management of long-term conditions
- Delivering health and social care that is people-led and ‘Value Based
- Strengthening integration across the system
- Improving access to community-based services and treatments
- Redesigning hospital services to complement more community care
- Delivering services which are accessible through digital technologies
To implement the SRF, the Framework proposes using a phased, three-horizon model, with a detailed plan for the first year and early actions for the first five.
For the period beyond Year 5, detailed actions will be shaped by evidence of progress made, engagement with delivery partners and evolving population needs.
Audit Scotland NHS Scotland Governance report
A new report has been published by Audit Scotland highlighting growing concerns about the governance of NHS Scotland, and warning that governance arrangements will need to be strengthened to deliver the scale of reform that is needed across the health service.
Specifically, the report notes that the governance and planning landscape for healthcare in Scotland is becoming increasingly complex, involving a range of local, regional, and national partners, which in turn creates unclear lines of accountability and decision-making.
It also raises concerns about weaknesses in national scrutiny and the risks posed by the Director General for Health and Social Care also serving as Chief Executive of NHS Scotland —a dual role that combines responsibility for both setting NHS Scotland’s direction and holding it to account.
Overall, Audit Scotland calls for stronger governance to support the scale of reform needed to keep NHS services sustainable and affordable, including better use of the Blueprint for Good Governance.
Update on the Scottish palliative care strategy
In response to a written parliamentary question tabled by Jackie Baillie in May, the Minister for Public Health and Women’s Health, Jenni Minto confirmed that responses to the consultation have now been analysed, and the final version of the strategy and analysis report are due to be published in the summer.
Minto also stated that the strategy will be published alongside a delivery plan, which will set out the Scottish Government’s approach to ensuring that everyone who needs it can access timely palliative care and care around dying.
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.
Together we support
Marking the final milestone in a transformational partnership
At the end of May, we paid the sixth and final instalment of Morrisons fundraising to hospices. This unrestricted funding was raised by colleagues at Morrisons stores and sites, and their customers, between 1 August – 31 November 2024. Over the course of the partnership, we paid out £859,743, bringing the total amount of unrestricted funds paid to children’s hospices during the partnership, to £5.45 million.
This is in addition to the £150k awarded in Making Memories Together grants, and the £960k of capital funding distributed through the ‘Building a Legacy Together’ grant programme. Thanks to all of your teams for your support during the Morrisons partnership – we achieved so much together, and it wouldn’t have been possible without you. It was a pleasure working with everyone on this once-in-a-lifetime opportunity.
Bolstering improvements in transition care for young people
At present, we are actively contributing to two key national research projects aimed at improving care for children with life-limiting conditions: the NIHR-funded HOPSCOTCH study and Hospice UK’s Transitions in Children’s Palliative Care project.
HOPSCOTCH (Helping Optimise Primary Care Support During Transition from Children’s Hospice Care) is a national NIHR-funded study led by the University of York. It aims to improve how primary care services, such as GPs and community health teams, support young people with life-limiting conditions as they transition from children’s hospice care into adulthood. We are contributing to this research by amplifying the voices of families and professionals, ensuring the findings are informed by real-world experiences and have practical relevance for children’s palliative care services. Learn more about the project.
We are also a partner in Hospice UK’s project on Transitions from Child to Adult Services in Palliative Care, which aims to improve support for young people moving from children’s to adult palliative care services. This work involves building evidence, sharing good practice, and identifying the gaps and challenges that families and professionals face during transition. We are contributing our sector expertise and networks to inform guidance, national learning, and future service development to ensure smoother, person-centred transitions. Learn more about the project.
Together we unite
Identifying which children need palliative care in the UK
We wanted to update you on the work underway to develop the categories for children with a life limiting or life-threatening illness. Phase 1 of this work has now been completed, with engagement from over 200 professionals across the children’s palliative care sector; for which we are extremely grateful. This consultation has resulted in a summary of the engagement with the sector and a series of recommendations for how the categories could be updated to better reflect the complexity and diversity of children’s needs and experiences.
The project is now moving into Phase 2, which will involve working in partnership with the Association for Paediatric Palliative Medicine (APPM), the national network of doctors, nurses and allied health professionals working in the area of Paediatric Palliative Medicine; to design the next phase, and undertake its development and rollout to the sector.
The aim is to ensure these revised definitions are robust, inclusive, and usable across all settings, from hospices and hospitals to community teams. Once finalised, they will be launched and disseminated nationally to support better service planning, data collection, and care coordination. The joint project team are meeting on 15th July and further updates will then follow.
Together we campaign
See the latest Leaders’ Briefing bulletin for updates.