Leaders’ Policy Briefing: Key updates

UK Wide

New policy report: ‘Vital care, fragile funding: why children’s hospices can’t keep filling the gap’

On 16 June, we published our new report, ‘Vital care, fragile funding: why children’s hospices can’t keep filling the gap’, which examines the funding children’s hospices across the UK received in 2025/26, the impact funding changes had on their services and what they expect to happen in 2026/27.

Specifically, the report has revealed that across the UK children’s hospices are providing more care and support than ever before, including increasing volumes of clinical care that would otherwise fall to the NHS. Yet despite this, statutory funding is failing to keep pace with the rising cost of providing care.

As a result, 60% of children’s hospices finished the financial year with an operating deficit and a third have already had to reduce respite services for families.

The report concludes by providing a series of recommendations aimed at governments across the whole of the UK. You can read the full report here.

England, Scotland and Wales

UK Government launches consultation on employment rights for unpaid carers and parents

The UK Government has launched a consultation on employment rights for unpaid carers and parents of children with serious illness, as part of its Make Work Pay agenda.

The consultation will review existing employment rights and explore whether further support is needed to help people balance work with caring responsibilities.

The government is seeking views on:

• How effectively the Carer’s Leave Act 2023 is working in practice
• Whether additional employment support is needed for unpaid carers
• The adequacy of current rights for parents of seriously ill children
• The quality and accessibility of existing guidance and information
• What further workplace support or flexibility would be most helpful

Views are welcomed from individuals with lived experience, employers and organisations supporting carers. The consultation is open until 1 September 2026.

England and Wales

Resolving Health Disputes Out of Court: A Policy Paper

A new policy paper from the University of Oxford, Resolving Health Disputes Out of Court, has been published, setting out recommendations to improve how disagreements between healthcare professionals, patients and families are managed.

The paper focuses on reducing the need for court proceedings by strengthening earlier, more collaborative approaches to resolving disputes.

Key themes include:

• The importance of early intervention and improved communication to prevent disputes escalating
• Greater use of independent second opinions to support decision-making in complex cases
• Expanding the role of Clinical Ethics Committees to provide ethical advice and support
• Increased use of independent mediation to resolve disagreements outside of court
• The need for better access to information, advocacy and support for families

The paper also highlights wider challenges, including variation in access to services, pressures on NHS resources, and the impact of organisational culture on trust between families and clinicians.

It concludes that stronger national guidance and investment in early dispute resolution could improve experiences for families and reduce the financial and emotional costs of litigation.

England

Interim update on the Modern Service Framework (MSF)

The government has published its interim update on the Modern Service Framework (MSF) for palliative and end of life care. In its update, the government confirmed that the overarching ambition of the MSF is that every person who needs palliative care or care at the end of life will have equitable access to high quality support, shaped by what matters to them, their families and carers.

This represents a shift from the previous long-term ambition, which explicitly referenced babies, children and young people. We are therefore urging ministers to ensure that the ambition clearly includes babies, children and young people so they are not overlooked within an all-age approach.

Alongside the overarching ambition, the interim update sets out five working sub-goals:

1. Support our staff and our population to better understand palliative care, death and dying.
2. Provide a person-centred approach and ensure equitable access to earlier and more effective identification of needs, in all settings of care.
3. Prevent distress through proactive and equitable assessment and management of need closer to home.
4. Ensure equitable access to personalised palliative care.
5. Deliver palliative care response that is timely, effective and equitable, including access to out-of-hours telephone support, within this parliament.

The update also outlines a series of immediate actions intended to begin improving palliative and end of life care. These include requiring ICBs to produce integrated needs assessments, moving towards sustainable contracting of both adult and children’s hospice services, and refreshing national guidance, including service specifications.

A briefing for members on the interim update is available here. We have also published our reaction here.

UK Government publishes formal response to Health and Social Care Committee recommendations on palliative care

The UK Government has published its formal response to the Health and Social Care Committee’s inquiry into palliative and end of life care, accepting the majority of recommendations and setting out plans for reform through the new Modern Service Framework (MSF) due in autumn 2026.

The response confirms a focus on strengthening accountability, improving access, and reducing inequalities, with integrated care boards (ICBs) expected to meet clearer performance and outcome measures under the new framework.

Most recommendations were accepted, including commitments to:

• strengthen system accountability with clearer metrics and oversight of ICB performance
•  improve provision for children and young people, including transition to adult services, by developing specific metrics and updating national guidance
• support 24/7 access to palliative and end of life care, building on existing guidance
• expand the use of data and dashboards to drive commissioning, planning and inequality monitoring
• develop a Single Patient Record to improve coordination across health and care providers
• ensure bereavement services are prioritised and overseen through existing accountability mechanisms
• move towards more sustainable and predictable funding for hospices, with greater use of strategic commissioning

However, not all recommendations were accepted.

• The government rejected calls to retain local authority representation on ICB boards, arguing collaboration will instead be strengthened at “place” level through other structures
• The government rejected introducing a formal target for identifying people in the last year of life on palliative care registers, though it signalled an ambition to improve identification rates over time
• On workforce, the government partially accepted proposals, committing to action through a forthcoming 10-Year Workforce Plan but declining to set national staffing targets or mandate competencies centrally.

You can read the full response here.

Local Government Association publishes independent analysis of government’s proposed SEND reforms

The Local Government Association (LGA) has published its response to the Government’s proposed SEND reforms. The proposals aim to help more children and young people receive support in their local settings, while ensuring specialist resources are focused on those with the most complex needs.

Key findings from the report include:

• The reforms are seen as potentially transformational, but only if delivered as a fully integrated system rather than in isolation
• There is strong confidence from councils that the reforms will improve early intervention and outcomes for children and young people
•  A clear commitment to inclusion is welcomed, particularly supporting more children in mainstream education
• The introduction of National Inclusion Standards and a revised SEND Code of Practice is viewed as key to improving consistency and fairness
• The current system is seen as discouraging early intervention, and reforms could help address this by supporting needs earlier without requiring statutory plans
• Successful delivery will depend on clear national expectations, accountability, and sufficient resources across the system

The LGA emphasises that successful implementation will be key, particularly ensuring clear national standards, adequate resourcing, and strong partnership working across services.

Scotland

Palliative Care Strategy Equality Impact Assessment published

The Scottish Government has published the Equality Impact Assessment (EQIA) for its Palliative Care Strategy, setting out how the strategy is expected to impact different population groups.

The assessment considers the impact of the strategy across all protected characteristics and draws on evidence from research, engagement and consultation activity.

Key findings include:

• The strategy is not expected to have a negative impact on any protected characteristic groups
• Evidence highlights ongoing inequalities in access to palliative care for some groups, including people with disabilities, severe mental illness and LGBTQ+ individuals
• The importance of culturally competent care and inclusive services for minority ethnic and faith groups
• Recognition of the need to improve experiences for children and young people and their families

The strategy includes actions to improve workforce knowledge, data collection and service design, with the aim of delivering more equitable and person-centred palliative care.

Young Lives vs Cancer launch open letter calling on Scottish Government to prioritise children with cancer

Young Lives vs Cancer has launched an open letter, calling for children and young people with cancer to be prioritised across government policy and services.

The letter highlights the distinct challenges faced by children and young people with cancer, including long treatment far from home, lasting impacts on education and wellbeing, and significant financial pressures on families. It also raises concerns about gaps in support after treatment and barriers such as delays in diagnosis.

Through this letter, the charity is calling for a new Children and Young People’s Cancer Strategy and expansion of financial support to all under-25s receiving treatment.

To sign the open letter, please click here.

Wales

Young Lives vs Cancer launch open letter calling on Welsh Government to prioritise children with cancer

Young Lives vs Cancer has launched an open letter to Wales’ First Minister, calling for children and young people with cancer to be prioritised.

The letter highlights the unique challenges faced by young people with cancer, including disruption to education, long-term impacts on wellbeing, and financial pressures on families. It also points to gaps in support and the need for more coordinated services.

Through the letter, the charity is calling for stronger government action to improve care, support and outcomes for young people and their families.

To sign the open letter, please click here.

Together We Campaign

Thank you to everyone who invited their MP to attend the APPG for Children Who Need Palliative Care reception

On Tuesday 16 June, the All Party Parliamentary Group for Children Who Need Palliative Care hosted a parliamentary reception to mark Children’s Hospice Week. Thank you to everyone who joined us at the event and invited their MP to attend.

During the reception, we heard from Paul Woodward, who shared his experience of accessing seven years of support from Derian House Children’s Hospice before his son, Kalel died aged 11 in 2019. In doing so, Paul spoke about the reality of children’s hospices and the impact they have for children with serious illness. Paul also showed the trailer for a documentary on children’s hospice care, called The Little Things, that he has produced.

We also heard from Nick Carroll, chief executive of Together for Short Lives, who shared findings from a new report, and the Minister of State for Care, Stephen Kinnock. Here, the minister acknowledged the critical role of children’s hospices and recognised the significant financial challenges facing the sector. He then went on to outline the work the government is doing, including recent investment in hospices and the forthcoming Modern Service Framework (MSF) for palliative and end of life care, expected to be published in full later this year.

Importantly, the minister reassured attendees that the MSF will reflect the needs of babies, children and young people and stated that integrated care boards (ICBs) have been asked to produce integrated needs assessments to gain a detailed understanding of local populations.

You can read the minister’s full speech here. You can find a full list of MPs and peers that attended the event here.