Leaders’ Policy Briefing: Key updates

What you need to know

UK-wide

Building a National Vision for Children’s Palliative Care

Together for Short Lives is developing a UK-wide National Vision for Children’s Palliative Care so that, as a sector, we can build a shared case for change.

We want to set out what excellent care should look like for babies, children and young people with serious illness and their families over the next decade. The vision is intended to complement wider policy developments across the UK rather than duplicate them, helping the sector articulate shared priorities and drive system improvement.

We are inviting professionals, families and partners to help shape the work through a short consultation survey. As governments and health systems continue to focus on integration, neighbourhood health, prevention and service reform, this is an important opportunity to ensure children’s palliative care has a clear and compelling vision for the future. The wider context includes growing policy interest in joined-up services and family-centred care.

Find out more
Complete the survey

Abstract submissions now open for Building Tomorrow Together 2027

Professionals, researchers, practitioners, educators and service leaders are invited to submit abstracts for our UK-wide conference.
Building Tomorrow Together will take place on 18 May 2027 at The Vox, Birmingham. The conference will bring together colleagues from across children’s palliative care to showcase innovation, share emerging evidence, discuss practical solutions and explore the future of the sector.

This is an opportunity to demonstrate what works, share learning and contribute to discussions about how services can continue to improve outcomes for children and families.

The deadline for abstract submissions is Friday 18 December 2026.
Find out more

New employment support announced for young disabled people

The government has announced plans to provide fast-tracked employment support for young disabled people and young people with long-term health conditions.

While not specific to children’s palliative care, the initiative is relevant to increasing numbers of young adults living with complex and life-limiting conditions who require support to achieve their ambitions, participate in society and access meaningful employment opportunities.

Prime Minister signals action on locked Child Trust Funds

Families of disabled young people have received fresh hope that barriers to accessing Child Trust Funds will be addressed.

At a recent Prime Minister’s Questions, Andy Burnham acknowledged the complex, lengthy and costly process faced by families when a young person who lacks mental capacity turns 18. He confirmed that ministers are reviewing the system and expect to set out a response within weeks. Contact is supporting calls for a simpler process so disabled young people can access their savings without unnecessary legal barriers.
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Government considering future support for disabled children following closure of Family Fund mobility scheme

The government has confirmed that it is continuing discussions about how best to support disabled children under the age of three following the closure of the Family Fund Mobility Support Programme.

In response to a parliamentary question from Andrew Snowden MP, the Minister for Social Security and Disability, Sir Stephen Timms MP, confirmed that there are currently no plans to change the age restrictions for the mobility component of Disability Living Allowance for Children (DLA). Under current rules, children can only receive the higher-rate mobility component from age three and the lower-rate mobility component from age five.

However, the minister acknowledged the role played by the Family Fund Mobility Support Programme, which operated between 2018 and 2026 with funding from the Motability Foundation. The scheme supported more than 1,800 families with disabled children under three by helping them access leased vehicles before they became eligible for the main Motability Scheme. A £5 million-a-year funding commitment announced in 2022 enabled the programme to continue for a further three years before it closed when funding came to an end.

While the government confirmed that the Motability Foundation has not committed to continuing the programme, ministers stated that discussions with Family Fund are ongoing about future support for children with these needs.

The issue remains significant for families of very young disabled children, many of whom face substantial transport and mobility-related costs before they become eligible for the mobility component of DLA or the main Motability Scheme. The government’s response suggests that while no replacement programme has yet been announced, discussions about future support remain active.
Parliamentary question: Asked by Andrew Snowden MP (Conservative, Fylde) and answered by Sir Stephen Timms MP on 22 October 2026.

England and Wales

Consultation launched on extending Charity Commission powers to tackle extremism

The Department for Culture, Media and Sport has launched a 10-week consultation on proposals to extend the Charity Commission’s powers to tackle extremism. The consultation seeks views on draft regulations that would provide additional powers to disqualify certain individuals from serving as charity trustees or senior managers.

Charities, trustees, senior leaders and charity advisers may wish to review the proposals and consider responding.
Read the consultation

England

Modern Service Framework presents a major opportunity, but delivery remains key

The forthcoming Modern Service Framework (MSF) for Palliative Care and End of Life Care remains the most significant national policy development affecting children’s palliative care in England. Officials advise us that they now expect it to be published in December.

The government and NHS England have confirmed that the framework will be the principal vehicle for improving access to palliative care, reducing inequalities, strengthening care coordination and supporting community-based services across all age groups. Babies, children and young people are expected to be included within the framework, reflecting sustained engagement by Together for Short Lives and sector partners.

However, publication of the framework alone will not improve services. Significant questions remain about implementation, accountability and investment. We remain concerned about the extent to which it will emphasise to ICBs that babies, children and young people should be prioritised alongside older adults. We are continuing to make this case to officials.

Further information:
The government’s MSF update from June
NHS England commissioning guidance 

Growing national attention on the children’s palliative care provision gap

New national media coverage has highlighted growing concerns about the gap between demand for children’s palliative care and the services available to families.

Together for Short Lives has secured more coverage in the New Statesman, highlighting increasing pressure on children’s palliative care services, workforce shortages, inconsistent funding arrangements and significant variation in access to care. The article reflects many of the concerns that Together for Short Lives continues to raise with government, NHS England and policymakers.

As more children are living longer with increasingly complex conditions, demand for specialist support continues to grow. Yet many families still face unequal access to respite care, symptom management, care coordination and family support depending on where they live.
Read the article

Health Bill amendments address palliative care and children’s services

A series of amendments to the Health Bill proposed by peers could strengthen the way in which palliative care is commissioned. Proposals include requiring integrated care boards to commission sufficient specialist palliative care, improving access to medicines for voluntary hospices and introducing safeguards around changes to specialised commissioning.

We will follow the Bill’s progress closely. Next month’s Leaders’ Briefing will update members on whether peers vote to include these changes in the Bill and how ministers respond to the proposals.

Read the latest list of amendments

New report maps children’s health and care system in England

A new report from The King’s Fund explores how health, education, social care, local authorities and voluntary organisations work together to support children and young people. The report highlights the importance of joined-up, family-centred care and early intervention, while also noting the challenges created by growing demand, workforce pressures and long waits for support. It argues that improving children’s outcomes depends on effective collaboration between services rather than healthcare acting alone.

The report reflects growing policy emphasis on prevention, integrated care and neighbourhood-based approaches, themes that are increasingly relevant to children with life-limiting and life-threatening conditions and their families.
Read the report

Neighbourhood health reforms continue to gather pace

Government reforms continue to shift services towards neighbourhood-based care and greater integration between health, social care and community support.

Recent policy developments demonstrate growing emphasis on delivering support closer to home, improving care coordination and reducing reliance on hospital-based care. Neighbourhood Health Trailblazer programmes are testing new community-based approaches, including models focused on end of life care and support outside hospital settings.

These reforms could have significant implications for children’s palliative care services, many of which already provide highly integrated care in community settings.

New integrated mental health and social care pilot announced

The Government has announced a £9.4 million pilot bringing mental health professionals directly into children’s social care teams in Greater Manchester.

The Care Together programme will provide integrated support for up to 7,000 children and young people supported by social care services. Mental health professionals will work alongside children’s social care teams to improve access to support, reduce fragmentation and provide more coordinated care for children and families.

The programme reflects wider policy priorities around prevention, early intervention and integrated support.
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Children’s social care reform remains high on the political agenda

Officials have provided further insight into the government’s plans for implementing the Law Commission recommendations on social care. At a recent engagement with charities and family organisations, civil servants indicated that a response is expected within the next few months and suggested that a number of the recommendations are likely to be taken forward.

Key areas highlighted included earlier transition planning from age 14, stronger cross-service coordination beyond social care, clearer information about families’ entitlements to support, improved statutory guidance, and greater access to key workers for families. Officials also appeared receptive to discussions about improving assessments for disabled children and their families.

However, questions remain about how reforms will be implemented in practice. Participants noted concerns about a lack of coordination across different strands of the SEND reform programme, while there is currently no substantive discussion on short breaks funding. Officials are also resisting proposals for national eligibility standards, and are instead pointing to the government’s devolution agenda.

Together for Short Lives will continue to monitor developments closely, including the government’s forthcoming response to the Law Commission recommendations, and will keep members updated on any implications for our sector.

Children’s communication and SEND concerns highlighted

A major new report has warned that around 1.3 million children and young people with Developmental Language Disorder (DLD) risk being overlooked within current SEND reforms.

Speech and Language UK has highlighted concerns that DLD remains poorly recognised despite affecting around two children in every classroom. The charity is calling for greater awareness, earlier identification and stronger support pathways.
These findings contribute to wider discussions about SEND reform and support for children with additional needs.

Northern Ireland

New vision aims to address inequalities in palliative care

Political focus on palliative care continues to grow in Northern Ireland.

Alongside development of a strategic action plan for palliative care, Hospice Alliance Northern Ireland has published a new vision for hospice and palliative care services. The organisation has highlighted concerns about variation in access and is calling for action to address inequalities in provision.

These developments build on recommendations from the Northern Ireland Assembly Health Committee’s inquiry into access to palliative care services and reinforce the need for sustainable, equitable access to care across Northern Ireland.

Scotland

Child health inequalities remain a major concern

New analysis from the Royal College of Paediatrics and Child Health has highlighted continuing health inequalities affecting children in Scotland.

The report identified persistent disparities linked to deprivation across a range of indicators, reinforcing concerns about child poverty, prevention and equitable access to services. These issues remain highly relevant to children with serious illnesses and complex health needs.

National hospice funding framework under development

The Scottish Government has confirmed work is underway on a new national framework for hospice commissioning and funding.
Ministers have reiterated their commitment to working with hospice leaders and Hospice UK to develop more effective planning and commissioning arrangements for hospice services. The work aims to improve sustainability and longer-term certainty for providers.

The Minister for Community Care, Alison Thewliss MSP, has also confirmed that £9.4 million is being distributed to Scotland’s independent hospices to help them provide NHS pay parity for staff delivering essential palliative care services. The funding is being allocated through NHS boards for immediate onward payment to hospices, including £1.54 million for Children’s Hospices Across Scotland (CHAS).

Wales

Pressure grows for sustainable hospice funding

Hospice funding has moved further up the political agenda in Wales.

Hospice UK and Hospices Cymru have called for an additional £30 million to secure fair and sustainable funding for hospice care for the remainder of the current Senedd term. The campaign reflects growing concern about workforce pressures, increasing demand and financial challenges facing hospice services.

The Senedd has held a cross-party debate on the future of palliative and end-of-life care in Wales, with MSs from all parties calling for action to secure sustainable funding for hospices and improve access to care.

Speakers recognised the vital role that hospices play in supporting children, young people and adults with serious illnesses, as well as providing essential respite, bereavement and family support. There was broad agreement on the growing demand for palliative care, the financial pressures facing hospices, workforce challenges and the need for greater certainty around future funding.

Several MSs paid particular tribute to Tŷ Hafan and Tŷ Gobaith, recognising the outstanding care they provide to children with life-shortening conditions and their families across Wales.

Responding on behalf of the Welsh Government, Cabinet Minister for Health and Care Mabon ap Gwynfor acknowledged the pressures facing the sector, reaffirmed the Welsh Government’s commitment to developing more sustainable funding and commissioning arrangements, and announced plans for a national summit on palliative and end-of-life care next year.We welcome the strong cross-party recognition of the importance of children’s palliative care and the need for sustainable, long-term investment in hospice services.

We will continue to amplify Tŷ Hafan and Tŷ Gobaith’s work to campaign for families of children in Wales with serious illness to receive sustainable, high-quality children’s palliative care when and where they need it.

You can read a transcript of the debate here.

Together We Unite

Children’s Hospice Income Generation Benchmarking

db associates is restarting its income generation benchmarking survey for UK children’s hospices, which previously ran with 12 children’s hospices.  Using 2025/26 accounts, it will compare each hospice’s legacy, general fundraising, lottery and retail income per head of adult population, alongside return on investment and other supporting statistics and measures.

Results will be shown both as they stand and adjusted for local context. Each participating hospice will receive an individual report as well as the overall findings. There will also be a virtual event to discuss the results and hear from stand out performers.The cost is £495 plus VAT, and the survey will go ahead if at least eight hospices take part.

To find out more, contact David Burland at dburland@dburlandassociates.co.uk by 20 November. 

Together We Campaign

Across the political spectrum: reflections from conference season

Every autumn offers an opportunity to step back from day-to-day policy discussions and hear directly from the people shaping Britain’s political future. This year’s conference season was particularly valuable because it highlighted not only differences between parties, but also some striking areas of agreement about the challenges facing public services, families and communities.

Over the past few weeks, James attended both the Labour Party Conference 2026 and the Reform UK National Conference 2026 on behalf of Together for Short Lives. While the two events reflected very different political traditions and priorities, both provided useful insights into the policy environment in which children’s palliative care will need to make its case over the coming years.

Labour: prevention, families and fixing the system

At Labour Party Conference, much of the discussion focused on reforming public services so they work more effectively around people’s lives. Across sessions covering health, maternity services, child health and wider public service reform, ministers and policymakers repeatedly returned to themes of prevention, early intervention and integrated support.

One of the ideas James heard most often was the need to “fix the wiring” of public services. The argument was that families should not have to navigate multiple disconnected systems to get the support they need. Instead, health services, social care, education and community organisations should work together more effectively behind the scenes.

James attended a range of discussions and fringe events featuring senior ministers and decision-makers, including Yvette Cooper and Alison McGovern. What stood out across many of these conversations was the recognition that outcomes are shaped not just by individual services, but by how well those services connect with one another.

Child and maternal health featured prominently throughout the conference. There was a clear emphasis on giving every child the best possible start in life, reducing inequalities and strengthening preventative support. Ministers also spoke frequently about neighbourhood health services and the ambition to deliver more joined-up care closer to home.

For Together for Short Lives, these discussions were encouraging. Families of children with life-limiting and life-threatening conditions consistently tell us how difficult it can be to navigate fragmented systems. The government’s focus on coordination, prevention and family-centred services aligns closely with many of the changes we have long argued are needed.

Reform UK: communities, civic institutions and the role of the state

James also attended the Reform UK National Conference 2026 in Birmingham.

The atmosphere and policy discussions were very different, but equally informative. Rather than focusing on expanding public service delivery, many speakers emphasised the role of families, communities, voluntary organisations and civic institutions in addressing social challenges.

One of the most interesting contributions came from Danny Kruger MP, who argued that government should concentrate on the functions only the state can perform while creating more space for families, communities and voluntary organisations to play a leading role in supporting people. It was a vision that placed significant emphasis on civil society and local action.

In his closing speech, Nigel Farage outlined Reform UK’s ambitions for major public service reform, including the NHS. While maintaining support for a tax-funded health service free at the point of use, he argued that greater attention should be paid to workforce expansion and addressing capacity pressures.

Although the policy prescriptions differed significantly from those discussed at Labour Conference, there were some common themes. Questions about how services are organised, how support reaches vulnerable families and how communities can be strengthened were evident across both events.

What this means for children’s palliative care

Issues such as sustainable children’s palliative care funding, workforce capacity, care coordination, support for family carers and access to community-based services matter regardless of which party forms a government.

Whether the conversation is framed around prevention and integrated public services, or around stronger communities and civic institutions, there are opportunities to make the case for children’s palliative care.

Across both conferences, we were struck by how often speakers talked about supporting families, reducing complexity and improving outcomes for people who rely on multiple services. Those priorities resonate strongly with the experiences of the children, young people and families we represent.

As Together for Short Lives continues to influence the development of the Modern Service Framework for Palliative Care and End of Life Care, neighbourhood health reforms and wider children’s policy, maintaining relationships across the political landscape will remain essential. Conference season provided a valuable reminder that while politicians may disagree about how change should happen, there is often more consensus than might appear at first glance about the problems that need solving.

For our sector, that creates an important opportunity to ensure that the voices of seriously ill children and their families continue to be heard, whatever the political weather.