Leaders’ Policy Briefing: Key updates

Building Tomorrow Together: bookings now open

Join us for the Together for Short Lives UK-wide conference, Building Tomorrow Together, on 18 May 2027 at The Vox, Birmingham, and help shape the future of children’s palliative care.

It’s a unique opportunity to connect with colleagues from across the sector, hear from leading voices, share ideas and explore practical solutions to the challenges and opportunities facing children’s palliative care today.

Through inspiring keynote speakers, thought-provoking discussions, practical learning and opportunities to share ideas with colleagues from across the sector, Building Tomorrow Together will empower you with fresh perspectives and insights to help drive meaningful change for you, your colleagues and the children and families you support.

Whether you work in clinical practice, service leadership, research, education or policy, this is your opportunity to be part of the conversation shaping the future of children’s palliative care, together.

Book your early bird tickets today

New review identifies what joined-up care for children with life-limiting conditions should look like

A new study led by researchers including Lorna Fraser has examined how health, social care, education and voluntary sector services can work together more effectively for children and young people with life-limiting conditions. The review finds that successful integrated care depends on strong relationships between organisations, clear care coordination, shared goals and effective communication between professionals and families.

The authors conclude that while integrated care is widely supported in principle, it requires sustained investment, leadership and collaboration across multiple sectors to deliver meaningful improvements for families. The findings are particularly relevant as governments across the UK continue to pursue neighbourhood health and integrated care reforms.

Reference: Multisectoral Integrated Care for Children and Young People with Life-Limiting Conditions: A Realist Review, published 8 September 2026 in Palliative Medicine.

Progress on access to Child Trust Funds for disabled young people

Contact has shared encouraging progress in its campaign to make it easier for families to access Child Trust Funds and Junior ISAs belonging to disabled young people who lack the mental capacity to manage their finances. Currently, families can face a lengthy, costly and stressful Court of Protection process to access their child’s savings once they turn 18.

The House of Lords has backed an amendment which would establish a legal framework allowing financial providers to release funds directly to families in these circumstances. If the change is also approved by the House of Commons, it could provide families with a clearer and more consistent route to accessing their young person’s savings.

Alongside this, the Financial Conduct Authority (FCA) is reviewing unclaimed Child Trust Funds and will investigate the barriers faced by parents seeking to access funds belonging to disabled young people. The review is expected to conclude in 2027. Nationwide has also introduced dedicated guidance and support for families navigating access to Child Trust Funds and Junior ISAs. Together, these developments represent welcome progress towards reducing unnecessary barriers for disabled young people and their families. Read the full update from Contact

Assisted dying bill falls, but focus on palliative care must remain

The failure of the Terminally Ill Adults (End of Life) Bill in Parliament has prompted renewed discussion about the future of palliative and end of life care services. In our response to the vote, Together for Short Lives emphasised that, regardless of the outcome of assisted dying legislation, the urgent need to improve access to high-quality palliative care remains unchanged.

We called on policymakers to maintain focus on the issues that matter most to children with serious illness and their families, including sustainable hospice funding, improved care coordination, equitable access to services and delivery of the forthcoming Modern Service Framework for Palliative Care and End of Life Care. We also highlighted the importance of ensuring that every family can access the care, support and choices they need throughout their child’s illness and at the end of life.
Read our response.

Children’s hospice funding and services discussed in Parliament

Recent parliamentary questions have focused on the sustainability of hospice services, specialist palliative care provision, commissioning responsibilities and access to palliative care services. Government responses have reiterated commitments to hospice funding and confirmed ongoing work to develop the Modern Service Framework for Palliative Care and End of Life Care, which will cover both specialist and generalist services across all age groups.
https://questions-statements.parliament.uk/written-questions/detail/2026-09-08/HL3278
https://questions-statements.parliament.uk/written-questions/detail/2026-09-08/HL3279
https://questions-statements.parliament.uk/written-questions/detail/2026-09-08/HL3280
https://questions-statements.parliament.uk/written-questions/detail/2026-09-08/HL3281
https://questions-statements.parliament.uk/written-questions/detail/2026-09-08/HL3282

Neighbourhood Health Trailblazers announced

The Department of Health and Social Care has announced six Neighbourhood Health Trailblazer sites to test new approaches to community-based care. Several include a focus on frailty, cancer and end of life care, while the Bristol programme specifically aims to improve end of life care and support more people outside hospital settings.

The programme provides a further indication of the government’s commitment to neighbourhood health and a shift towards care delivered closer to home, with potential implications for future palliative care commissioning and service delivery.

Health Bill debate highlights support gap for families of children with serious illness

During Report Stage of the Health Bill, MPs debated proposals aimed at improving support for families of children with serious illness. Chris Hinchliff MP highlighted the challenges faced by parents who must simultaneously manage their child’s care, employment, finances and wider family responsibilities, arguing that existing systems are often fragmented and difficult to navigate. He cited evidence showing poorer health outcomes among mothers of children with life-limiting conditions and called for a more joined-up approach to family support.

His proposed new clause would have introduced a named co-ordinator to help families access financial support, employment rights advice and signposting to relevant services and charities through a single family support plan. Although the proposal was not adopted, the debate brought parliamentary attention to the needs of families caring for seriously ill children.

Responding for the government, Karin Smyth MP acknowledged that support for families of children with life-threatening illnesses is often not proactive or joined up, leaving parents to navigate systems themselves. She confirmed that the government-commissioned Hugh’s Report, examining the mental health impact of life-threatening childhood illness on families, is progressing and will be published during this Parliament, with a formal government response to follow within three months. She also stated that maternal and child health has been made a departmental priority and committed to exploring more coordinated support for families.

Family voice at the centre of patient safety reforms

A new way for urgent concerns to be raised about a mother or baby’s health is being rolled out in hospitals across Wales. Call for Concern gives women, parents and families a clear route to ask for urgent help if they’re worried that someone’s health is getting worse.
Families are often the first to notice when something isn’t right, whether that’s a mother becoming increasingly unwell or a baby behaving differently. Call for Concern makes sure those concerns are heard and acted on quickly.

The scheme has two parts: recording how a patient is feeling, and a clear route for patients and families to ask for further clinical review. Call for Concern adds to checks already used by hospital staff to spot the signs that a patient’s health is deteriorating, including the all-Wales Maternity Early Warning Score and the Neonatal Early Warning Trigger and Track tools. The scheme is similar to Martha’s Rule in England and Ryan’s Rule in Australia.

It is being introduced across adult, paediatric, maternity and neonatal wards in hospitals across Wales. Read more here.

Hospice UK and Hospices Cymru call for £30m to protect palliative care in Wales

Hospice UK and Hospices Cymru are calling on the Welsh Government to provide an additional £30 million to secure fair and stable funding for hospice care for the remainder of the current Senedd term. They warn that without further investment, essential palliative and end of life care services will become increasingly difficult to sustain.

Hospices across Wales support more than 20,000 children and adults each year, but rising demand, increasingly complex needs and growing pressure on community services are adding to financial challenges. Hospices currently rely on charitable fundraising for around two thirds of their income, alongside annual Welsh Government grants without guaranteed continuation.

The call follows a joint briefing at the Senedd, where patients, families and hospice staff shared their experiences with Members of the Senedd. More than 7,000 people have also written to their MS calling for stable hospice funding. A new Cross-Party Group on Palliative and Hospice Care will help keep funding and access to palliative care on the political agenda. Read more here. 

Taking our message to Reform UK

Earlier this month, James represented Together for Short Lives at the Reform UK National Conference 2026 in Birmingham as part of our commitment to engaging with decision-makers and influencers from across the political spectrum.

The conference provided useful insight into how Reform UK is developing its policy platform ahead of the next general election. In particular, Danny Kruger MP argued that the UK needs a smaller state, with greater responsibility devolved to families, communities, civic institutions and voluntary organisations. He suggested that government should focus on functions that only the state can perform, while reducing bureaucracy and creating more space for community-led solutions.

In his closing speech, Nigel Farage set out Reform UK’s ambition to reshape public services, including the NHS. While stressing continued support for a tax-funded NHS free at the point of use, he argued that the health service should focus more strongly on workforce expansion.

For Together for Short Lives, engagement across all major political parties remains essential. As children’s palliative care continues to face challenges relating to funding, commissioning and workforce capacity, we will continue to build understanding of the needs of children with serious illness and their families regardless of political affiliation.

Calling for better social care for disabled children

Together for Short Lives has joined more than 50 organisations supporting the Disabled Children’s Partnership’s open letter calling on government to reform social care for disabled children.

The campaign highlights growing concern that too many disabled children and their families are unable to access the support they need, leaving parents exhausted and children unable to take part fully in family and community life. It calls for a long-term plan for disabled children’s social care, sustainable investment and improved access to short breaks and family support services.

Recent evidence across the sector provides further context. New analysis has highlighted ongoing challenges facing children and young people with SEND within education systems, while debate continues around the future of disability benefits and wider support available to families.

For Together for Short Lives, this is a critical issue. Children with serious illness and their families cannot access truly holistic palliative care without strong social care and family support services sitting alongside healthcare provision.

More policy news and updates

New child health report highlights widening inequalities 

The Royal College of Paediatrics and Child Health’s new State of Child Health 2026 report provides a stark assessment of children’s health across the UK. The report finds that outcomes have either worsened or stalled across many key indicators, with widening inequalities linked to deprivation, workforce pressures and gaps in services. Areas highlighted include mental health, obesity, immunisation uptake and child poverty.

Growing concerns about outcomes for children and young people with SEND

Alongside wider concerns about children’s health inequalities, recent analysis highlighted significant challenges facing children and young people with special educational needs and disabilities (SEND). The Children’s Commissioner for England has highlighted higher rates of severe absence among college students with Education, Health and Care Plans (EHCPs), while analysis by Ambitious about Autism estimates that almost 56,000 children with SEND could miss school this September despite being enrolled. These findings reinforce ongoing concerns about access to education and support for children with complex needs.

Parliamentary proposal on communication with parents of critically ill children 

The Bill also included discussion of a proposed new clause on communication with parents of critically ill children. The proposal would have required guidance for integrated care boards covering parental involvement in major treatment decisions, access to independent second opinions, mediation where disagreements arise and arrangements to enable families to spend time with a child before death, including in a children’s hospice where appropriate. While the proposal was not incorporated into the Bill, it reflects continuing parliamentary interest in parental involvement and decision-making for critically ill children.

Modern service framework remains central to reform

Ministers have confirmed that the forthcoming Modern Service Framework for Palliative Care and End of Life Care will cover both specialist and generalist services across all age groups and will consider issues including access, quality, outcomes and identification of need. The government has also reiterated ambitions to increase identification of people approaching the end of life and reduce avoidable hospital admissions and bed days through stronger community-based services. As we continue to influence development of the framework, these exchanges provide further evidence that the MSF remains the key national policy vehicle for reforming palliative and end of life care services in England.

UK Government announces new bereavement leave rights

The UK Government has today announced new statutory bereavement leave rights which will come into force from April 2027. These will provide a legal right to bereavement leave following the death of a spouse or partner, parent, adult child or sibling, and introduce leave for parents and partners who experience pregnancy loss before 24 weeks.

This is an important policy development and one which reflects a long-standing position advocated by Together for Short Lives.

When parental bereavement leave and pay was introduced in 2018, we welcomed the legislation while highlighting an important gap: advances in medical care mean that many young people with serious illness survive into adulthood. We therefore called for bereavement leave and payments to be extended to parents whose children die up to the age of 25.

 

Today’s announcement is an important step towards recognising the experiences of these families. It acknowledges that the death of a young adult can have the same profound impact on parents and family members as the death of a younger child.

 

The announcement also sits alongside the UK Government’s wider review of parental leave and pay, including consideration of support for parents of terminally ill children as part of the Hugh’s Law campaign. We will continue engaging with policymakers to ensure the needs of families caring for children with serious illness are part of these discussions.