Leaders’ Policy Briefing: Key updates

England and Wales

UK Government announces reforms to WaterSure scheme

The UK Government has announced a series of reforms to the WaterSure scheme, which exists to help low-income, high water-usage households by capping their bills. The key changes announced include:

• Households receiving disability benefits will now qualify if their total income is below £25,745 per year.
• Bills will be capped at the lowest average reading, helping those currently paying more.
• People living alone will have their bills capped at the average bill for a one-person household.
• Applicants will no longer need to pay for a doctor’s note to support their claim.

Overall, it is expected that the changes will mean around 300,000 households experience lower bills. To qualify, households must have a water meter and either a qualifying medical condition that increases water usage or three or more children living at home.

You can read the full announcement here.

England

MPs debate the future of palliative care

On Thursday 5 March, MPs debated the future of palliative care in parliament, with many raising key issues concerning children’s palliative care. During the debate, Sir Julian Lewis (Conservative MP for New Forest East), utilised the briefing we had provided in advance to highlight how the way services are planned, funded and provided varies significantly across the country. In particular, he drew members attention to the postcode lottery that exists in children and families’ access to 24/7 end of life care at home, before posing the following six questions to the minister:

Will the Minister confirm that the modern service framework for palliative and end-of-life care, which we heard about from the hon. Member for York Central, will explicitly acknowledge the difference between adult and children’s palliative care and ensure that the needs of seriously ill children are not overlooked?

1. Can the Minister confirm that the framework will take a holistic approach and address the wide-ranging needs of seriously ill children and their families, including medical, emotional, social, psychological and practical needs?
2. Will the Minister commit to using the upcoming 10-year workforce plan to examine how the existing children’s palliative care workforce can be used as equitably as possible, including organising services into NHS-commissioned children’s palliative care operational delivery networks?
4. Can the Minister commit to increasing investment in specialist paediatric palliative medicine training by £2.4 million annually to address the funding gap?
6. Do the Government support the call of the Royal College of Nursing for nurse-to-patient ratios in all health and care settings? Will they commit to tackling the shortage in NHS community children’s nurses?With ICB funding for children’s hospices varying significantly across England, how is the Minister ensuring that every seriously ill child and their family, regardless of where they live, has equitable access to palliative care?

Ben Coleman (Labour MP for Chelsea and Fulham) later reiterated the inconsistencies in the commissioning of children’s palliative care and called for:

• Improved access to 24/7 care;
• Action to address workforce shortages;
• Better neonatal care, noting the progress made at Chelsea and Westminster hospital;
• Support for patient groups; and
• Protection of specialised services when NHS England is abolished.

In response to the debate, Karin Smyth, Minister of State for Secondary Care, responded directly to Sir Julian Lewis, claiming that the government recognises the different needs of children and families in this work. The minister also noted the provision of £80 million for children’s hospices over three years.

Other MPs to raise key points during the debate included:

• Mary Kelly Foy (Labour MP for City of Durham) and Tom Collins (Labour MP for Worcester) both highlighted the strain on hospice care for children.
• Brian Leishman (Labour MP for Alloa and Grangemouth) and Douglas McAllister (Labour MP for West Dunbartonshire) referenced the vital work of CHAS (Children’s Hospices Across Scotland).
• Alison Bennett (Liberal Democrat spokesperson for care and carers, and MP for Mid Sussex) noted the variation in funding for children’s hospices.
• Stuart Andrew (Shadow Secretary of State for Health and Social Care, and Conservative MP for Daventry) cited significant issues in commissioning of children’s palliative care and shortages among community children’s nurses.

You can read the full transcript here.

Government publishes review of CQC Regulation 9A: visiting and accompanying in care homes, hospitals and hospices

The Department of Health and Social Care (DHSC) has published its review of Regulation 9A, the legal standard introduced in April 2024 to protect people’s rights to visit and be accompanied in care homes, hospitals and hospices. The review, which commenced one year after the Regulation was introduced, finds strong support for the principle of open visiting but identifies significant variation, gaps in awareness and weaknesses in enforcement.

Key findings from the review include:

• Across all respondents, there is a strong consensus that visiting supports wellbeing trust and recovery, while restrictions cause distress, isolation and harm to mental and physical health.
• While Regulation 9A has strengthened expectations and consolidated good practice, implementation is inconsistent. 31% of individuals reported experiencing some visiting restriction since it came into force, mostly relating to infection control.
• For most providers, Regulation 9A confirmed existing good practice rather than driving major change.
• Across all engagement, there was strong support for distinguishing general visitors from essential care supporters – family members, unpaid carers and personal assistants who play a critical role in support, communication and safeguarding.
• Awareness of Regulation 9A is inconsistent. Many residents, families and frontline staff are unaware of it, and patients in hospitals often feel uninformed.
• Decision making and communication about visiting policies are variable and often unclear. Some providers treat the regulation as guidance rather than law.
• Monitoring and enforcement are significant concerns. Complaints are rare but this may indicate barriers to raising issues, including fear of reprisals and unclear accountability.

Following this review, DHSC has confirmed it will take forward a programme of improvements to make Regulation 9A more effective and consistently applied. Key actions include:

• Improving data clarity: Revising Capacity Tracker visiting questions to ensure providers understand what constitutes a restriction and to generate more reliable data.
• Raising awareness: Producing tailored communication and awareness materials for care homes, hospitals and hospices to improve understanding of visiting rights and ensure visiting preferences are reflected in care plans.
• Enhancing training: Encouraging providers to incorporate these new materials into staff training to support better decision making and communication.
• Strengthening CQC alignment: Working with CQC so that visiting rights are embedded into its longer-term regulatory reforms and assessment processes.
• Ongoing monitoring: Continuing to track how well the new measures close gaps in practice and protect visiting rights.
• Exploring legislation: Considering future legislative changes to further strengthen visiting rights and formally recognise family members and carers as equal partners in care.

You can read the full review here.

2026 Rare Action Plan for England published

The Department of Health and Social Care (DHSC) has published its fifth and final Rare Diseases Action Plan under the current UK Rare Diseases Framework. The plan updates progress on all 39 existing actions, introduces one new action on health equity, and highlights key developments across the system.

The Plan continues to follow the Framework’s four priorities:

1. Faster diagnosis
2. Increased healthcare professional awareness
3. Better coordination of care
4. Improved access to specialist care, treatment and medicines

It also highlights cross‑cutting themes: health equity and data/digital improvements. Headline updates included in the plan are as follows:

• A NICE Rare Diseases Quality Standard has been published.
• MHRA (Medicines and Healthcare products Regulatory Agency) plans to reform regulations for rare disease medicines, including joint licensing–valuation pathways with NICE by April 2026.
• Funding has been confirmed for two pilot centres for undiagnosed rare conditions, opening autumn 2026.
• Progress is continuing on EquipoISE, a major evaluation of adding new conditions to the NHS newborn screening programme.
• There is continued expansion of whole genome sequencing for newborns to 2027.

The UK Rare Diseases Framework has been extended to 2027.

You can read the full action plan here.

NHS England updates on plans to transfer direct commissioning functions

From April 2027, ICBs are expected to take on commissioning responsibility for vaccination programmes, health and justice services, specified specialised services and primary care services.

When NHS England is abolished, the Department of Health and Social Care (DHSC) will take on national commissioning for:

• Highly specialised services
• High secure mental health services
• Certain specialised services unsuitable for local commissioning
• Armed forces health services
• National reimbursement of highcost drugs and devices

Creation of seven offices for pan-ICB commissioning (OPICs): 

To support ICBs, each NHS region will establish an OPIC – a shared hub of specialist commissioning expertise.

OPICs will:

• Support effective commissioning at scale
• Facilitate multiICB collaboration
• Strengthen patient involvement
• Provide specialist resource and commissioning capability

Each region must identify a host ICB by April 2026, which will receive transferring staff and formally host the OPIC from April 2027.

Preparing regional teams for transfer in 2026/27: 
NHS England has agreed indicative funding envelopes for its regional commissioning teams, including relevant commissioning support unit functions, for 2026/27. These allocations will transfer to ICBs from April 2027 to fund the new OPICs.

The envelopes also include funding for the regional resource that currently supports commissioning of specialised services that will remain nationally commissioned by DHSC in future. As far as possible, this expertise will continue to be provided by OPICs on DHSC’s behalf through servicelevel agreements, although some specialist functions will continue to sit nationally.

With funding envelopes now set, ICBs are expected to work closely with their NHS England regional teams throughout 2026/27 to shape the design of these teams so that fully functioning OPICs can transfer to their designated host ICB in April 2027.

You can read the full update here.

Government publishes Neighbourhood Health Framework

The government has published its neighbourhood health framework, providing guidance for ICBs, local authorities and wider system partners as they look to deliver the vision of the 10-Year Health Plan. The framework seeks to organise GP, community health, social care and voluntary services around local populations to deliver more preventive, joined up care closer to home to improve outcomes, reduce inequalities and relieve pressure on hospitals.

To deliver the aims of neighbourhood health, the framework outlines three reform agendas:

1. Improving routine healthcare by improving GP access through better digital tools and streamlined approaches, expanding Pharmacy First services and access to diagnostic services, and reforming out-of-hours and 111 services.
2. Improving proactive care by requiring integrated neighbourhood teams (INTs) to coordinate multidisciplinary support for priority cohorts including children and young people and individuals approaching the end of life. INTs will be expected to provide timely access to paediatric expertise in the community and to support families to manage conditions safely at home where appropriate. The framework states that by 2028/29, every child who needs access to an INT will have it. For people nearing the end of life, neighbourhood teams will play a central role in earlier identification, better proactive planning and improved access to palliative and end of life care, supporting the framework’s national goal to increase identification of those approaching end of life by 10% and reduce nonelective admissions and bed days for this cohort by 10% by March 2029. This agenda also includes improved data sharing across settings and the introduction of a new planned-care model with GPs leading referral optimisation.
3. Delivering better alternatives to hospital care by expanding urgent community response, scaling up virtual wards, increasing step-up/step-down intermediate care and piloting 24/7 neighbourhood mental health centres.

To make this model work in practice, the framework sets out new ways for services to be organised. While GP and hospital core national contracts will remain in place, the framework introduced three new population-based contracting options:

1. Single Neighbourhood Providers (SNPs) will deliver neighbourhood services and INTs for a population of about 50,000.
2. Multi‑Neighbourhood Providers (MNPs) will coordinate service delivery across several neighbourhoods, typically around 250,000 people.
3. Integrated Health Organisations (IHOs) will take responsibility for a whole‑population health budget and lead system redesign across community, neighbourhood and hospital care; these contracts can initially only be held by NHS organisations.

Over time, primary care networks may evolve into SNPs as neighbourhood arrangements mature, enabling stronger integration without changing national GP contracts.

The framework also outlines the physical and workforce infrastructure needed to support neighbourhood health. Central to this is a commitment to develop 250 Neighbourhood Health Centres (NHCs) by 2035 using a mixture of repurposed estate and new builds. These centres will collocate GP, community, local authority, VCSE and wider support services such as Family Hubs, housing services and employment support, with early development focused on areas of highest deprivation.

Financially, ICBs will be expected to shift resources away from hospitals and into neighbourhood based care, implement core foundations in 2026/27 and then deliver the full neighbourhood health plans by 2029.

The full neighbourhood health framework is available here.

Government finalises new Maternity and Neonatal Taskforce

The Department for Health and Social Care has finalised the new Maternity and Neonatal taskforce to deliver improvements in maternity care and tackle deep‑rooted inequalities affecting women, babies and families. The panel brings together harmed and bereaved families, senior NHS leaders, royal colleges, researchers, campaigners and international experts.

The taskforce will:

• Act on the recommendations from Baroness Amos’ independent national investigation into maternity and neonatal services.
• Address long‑standing safety issues and inequalities across maternity and neonatal care.
• Respond to findings from recent maternity inquiries.

Alongside setting up the taskforce, the government has also released an additional £25 million for NHS Trusts to:

• Tackle key causes of maternal death.
• Improve and expand bereavement facilities for families experiencing loss.
• Strengthen maternity triage services for women experiencing unexpected complications.

You can read the full announcement here.

Government consults on school medical conditions guidance

The Department for Education has launched a consultation on updated statutory guidance for how schools support pupils with medical conditions and allergies. The draft guidance replaces the 2015 version and applies to children with a wide range of health needs, including asthma, epilepsy, diabetes, allergies and long term conditions.

Some of the key proposed changes include:

• A new, detailed section on allergy safety.
• A requirement for schools to publish their medical conditions policy.
• A clearer process for identifying pupils with medical needs.
• A clearer definition of who requires an Individual Health Plan, what it must contain, and how often it should be reviewed.
• A stronger emphasis on inclusion, wellbeing and full participation in school life.

The consultation is open until 11:59pm on Friday 1 May 2026. More information and ways to respond can be found here.

UK Government announces investment for kinship carers

The government has announced seven new Kinship Zones across England in an effort to provide earlier, more consistent support for thousands of children being raised by kinship carers. Kinship carers are adults who step in to provide a loving and supportive home to children in their family whose parents are unable to care for them full-time for a wide range of reasons. They are often grandparents, aunts, uncles or family friends.

Recognising that kinship carers do not receive consistent financial support, unlike foster carers and adoptive families, the government has launched the launch of a new pilot financial allowance for eligible kinship carers. Backed by £126 million, the pilot is expected to support around 5,000 children and will run for three and a half years across seven local authorities:

• Bexley (Greater London)
• Bolton (North West)
• Newcastle (North East)
• North East Lincolnshire (East Midlands)
• Medway (South East)
• Thurrock (East of England)
• Wiltshire (South West)

These Kinship Zones will test how best to deliver financial support and wider help for kinship families, with local authorities given flexibility to tailor support to their communities.

You can read the full announcement here.

Northern Ireland

Health Minister announces Core Grant funding for 2026/27

Northern Ireland’s Health Minister has announced that over 70 community and voluntary organisations are set to receive Core Grant funding in 2026/27, increasing from 26 in the previous year. For 2026/27, the £1.8 million budget has been restructured and capped at £50,000 per organisation to ensure support reaches a wider range of groups, including smaller organisations struggling with core costs.

In total, 247 organisations applied for the funding. 70 scored highly enough for full funding and six will receive partial funding, pending financial checks. Unsuccessful applicants will be offered feedback, and a further funding call is expected in autumn 2026 for support from April 2027.

You can read the full announcement here.

Scotland

Scottish Parliament votes against Assisted Dying for Terminally Ill Adults (Scotland) Bill

On Tuesday 17 March, Members of the Scottish Parliament (MSPs) voted to block the Assisted Dying for Terminally Ill Adults (Scotland) Bill by 69 votes to 57, making clear their decision not to legalise assisted dying services in Scotland.

The vote followed days of debate during Stage Three, in which over 175 amendments were agreed by MSPs. Some of the key amendments agreed to during Stage Three included:

• A requirement for the Chief Medical Officer to issue specific guidance for assessments involving under25s with conditions of a fluctuating nature and an unpredictable prognosis.
• The mandatory involvement of social work and psychiatry professionals when assessing under25s with conditions of a fluctuating nature and an unpredictable prognosis.
• A requirement for Scottish Ministers to assess the impact of the Act on hospices and other palliative care providers, particularly considering the impact on staffing, funding and the operation of services.
• A requirement for Public Health Scotland to record the number of people under the age of 18 who request an assisted death as part of its data capture on who is seeking assisted dying services.

Scottish Government launches consultation on right to breaks for unpaid carers

The Scottish Government has opened a consultation on implementing the right to personalised short breaks support for unpaid carers under the Care Reform (Scotland) Act 2025. Building on the Carers (Scotland) Act 2016, the change will ensure carers can access personalised short breaks when they are not currently getting ‘sufficient breaks.’

Under the proposed changes, local authorities and Health and Social Care Partnerships will be required to assess whether carers have enough breaks and provide support if not, as part of preparing Adult Carer Support Plans (ACSPs) and Young Carer Statements (YCSs). The legislation will also introduce timescales for preparing these plans and require clearer local information on available short breaks.

Open until 22 May 2026, the current consultation is now seeking views on:

• The definition of ‘sufficient breaks’
• The types of breaks that should be included
• Timescales for ACSPs and YCSs
• Transitional arrangements.

More information and ways to respond can be found here.

Scotland publishes Rare Disease Action Plan progress report

Scotland has published its second – and likely final – progress report under the current UK Rare Diseases Framework, updating progress on all 18 actions in the 2022 Action Plan.

Key updates include:

1. Faster diagnosis: Progress includes benchmarking Scotland’s genomic testing system, planning investment to align testing with the rest of the UK, mapping over 1,000 genomic training resources, and preparing for newborn screening expansions.
2. Raising awareness: Recommendations from a major report on healthcare professionals’ experiences are being considered. New educational animations for professionals and patients have also been released.
3. Better coordination of care: A pilot support officer role is helping families navigate rare conditions; Scotland has introduced Future Care Planning for all ages, published a national strategy for disabled young people transitioning to adulthood, and launched MyCare.scot as part of a new digital health service.
4. Access to treatment: The UltraOrphan Pathway has been updated and is under review. Scotland is participating in the refreshed ILAP process, and a new Horizon Scanning Advisory Board is assessing high impact new medicines.

You can access the full report here.

Wales

Senedd votes to give consent to Terminally Ill Adults (End of Life) Bill

On Tuesday 24 February, the Senedd voted to give its consent to Westminster’s Terminally Ill Adults (End of Life) Bill, moving Wales closer to offering assisted dying services through the NHS. The vote – 28 in favour, 23 against, two abstentions – allows Welsh ministers to set up and regulate assisted dying services if the UK-wide bill becomes law.

Had the Senedd rejected the motion, assisted dying services – if legalised by the UK Parliament – would likely have been available only through private providers in Wales rather than the NHS.

The bill now continues its progress through the House of Lords, where a large number of amendments are still under consideration.

Supporters have expressed concern that extensive proposed changes could delay or jeopardise the legislation.

Wales publishes Rare Disease Action Plan progress report

Wales has published its latest progress report on the refreshed Rare Diseases Action Plan, highlighting strong progress across all priorities. Key achievements include establishing the UK’s first commissioned SWAN (Syndrome Without A Name) Clinic, creating a national rare disease data dashboard and adult rare disease register, and launching the Wales Rare Disease Research Network. The report concludes that these developments have strengthened evidence, improved diagnostics, and reinforced Wales’ commitment to delivering high quality, compassionate rare disease care.

Further progress includes appointing a Clinical Lead, expanding data and genomics work, and refreshing the Genomics Delivery Plan (2025–2030).

Key updates for each priority area include:

• Faster diagnosis: New funding for a Wales Rare Disease Research Hub; preparations for adding SMA and SCID to newborn screening.
• Raising awareness: Workforce education strengthened through the Genomics Workforce Plan.
• Better coordination: SWAN clinics have seen 100+ patients with a 30% diagnostic rate; a digital Rare Care Centre and patient passport are being piloted.
• Access to treatment: Wales is shaping national pathways for complex and novel therapies.

You can access the full report here.

Together We Support:

Demand for our cost of living support rises

Cost of living challenges have been the main reason for families of seriously ill children contacting Together for Short Lives’ Helpline, and we have seen a high number of first-time callers making contact to find out what support we are able to offer.

The expense of hospital stays also continues to see families reaching out to us. For example, just this week we were contacted by two families staying at Bristol Royal Hospital for Children seeking help with food costs.

Families and professionals can call our friendly, accredited helpline team on 0808 8088 100, drop us an email to helpline@togetherforshortlives.org.uk or visit our Family Support Hub at www.togetherforshortlives.org.uk/get-support It’s always there when they need us.

Together We Campaign:

Register your interest in attending our APPG reception during Children’s Hospice Week

On Tuesday 16 June 2026, the APPG for Children Who Need Palliative Care will hold a parliamentary reception from 3pm to 5pm in Terrace Dining Room A of the House of Commons. Speeches will begin at 4pm.

Held during Children’s Hospice Week, the reception will be an opportunity to celebrate the extraordinary care and support provided by children’s hospices across England and the wider UK. It will also be an opportunity to hear about Together for Short Lives’ latest report, which will be launched during the event and will highlight how children’s hospices are currently funded across England and the wider UK.

During the event, attendees will hear directly from senior children’s hospice leaders, a parent of a seriously ill child who accesses children’s hospice care and colleagues from Together for Short Lives. We have also invited Stephen Kinnock MP, Minister of State for Care, to speak about the action the government is taking – including the development of a Modern Service Framework for all age palliative and end of life care – to help secure a sustainable funding solution for children’s hospices and children’s palliative care more broadly.

As the venue has a limited capacity, we only have a select number of spaces available. If you would like to attend, please complete this registration form with an expression of interest by 5pm on Monday 11 May.

Spaces will be allocated on a first-come, first-served basis, while ensuring that as many organisations as possible are represented. If your organisation would like to send more than one representative, please ensure that each representative completes the registration form. Priority will be given to the first person from each organisation to complete the form; all subsequent registrants from the same organisation will be placed on a waiting list, with spaces offered if capacity remains after the initial allocation.