Winter policy roundup 2026

Date posted: 29th January 2026

The end of last year brought a wave of important policy activity shaping the landscape for seriously ill children and their families. From major inquiries into maternity and neonatal care, to funding commitments for children’s hospices and the creation of new palliative care frameworks, these developments continue to influence the year ahead. This roundup brings together the key updates from across England, Northern Ireland, Scotland and Wales, and explores what they mean for families.

UK-wide

Chancellor of the Exchequer delivers 2025 Budget

On 26 November 2025, the Chancellor of the Exchequer, Rachel Reeves, delivered the UK Government’s 2025 Budget. She stated that the government is seeking to:

cut the cost of living by tackling inflation and reducing energy bills
cut NHS waiting lists through additional appointments and the creation of neighbourhood health centres~
cut national debt and borrowing to reduce the amount spent on debt interest.

While children’s palliative care was not specifically mentioned in the Budget or in any of the accompanying documents, there were some measures contained within that could have an impact on seriously ill children, their families and the professionals and services that support them. These include:

Freezing personal income tax and national insurance contributions thresholds for a further three years from 2028/30.
Increasing the National Minimum Wage by 4.1% to £12.71 per hour and the National Minimum Wage for 18-20 year olds by 8.5% to £10.85 per hour from 1 April 2026.
Removing the two child limit on the Child Element in Universal Credit.

To help families understand what this means for them, we have published a short blog available here.

Government confirms day-one parental leave rights from April

The UK Government has confirmed that from April 2026, parents will gain day-one eligibility for unpaid parental leave, ending the 26-week qualifying period. It is estimated that this will impact approximately 1.5 million parents, with an additional 32,000 more fathers gaining immediate access to paternity leave. The government estimates this could result in an economic boost of £150 million a year if 1% of those currently out of work due to caring responsibilities return part-time.

As part of the wider reforms, a new Bereaved Partner’s Paternity Leave entitlement will also provide up to 52 weeks of leave for partners whose child’s mother dies within the first year of birth.

Ministers say these reforms, which form part of the Employment Rights Act, will support over 18 million workers, improve job security and help more parents stay in work.

You can read more here.

England and Wales

Terminally Ill Adults (End of Life) Bill continues its committee stage in the House of Lords

The Terminally Ill Adults (End of Life) Bill, which seeks to give terminally ill people over the age of 18 in England and Wales the right to choose to end their life, is currently going through its committee stage in the House of Lords.

So far, more than 1,000 amendments have been tabled by peers. This has raised concerns that the bill could run out of time before the parliamentary session ends in May. To avoid this, members of the House of Lords have voted to allow more time for scrutiny.

As part of this ongoing scrutiny, peers have also recently debated a proposal to raise the minimum age for assisted dying from 18 to 25. Baroness Berger, who put forward the amendment, argued that:

18 is an arbitrary threshold and does not reflect current understanding of brain development, which continues well into the mid-20s;
statutory protections under Education, Health and Care Plans already extend to 25, and that health and justice systems increasingly recognise 25 as a more appropriate marker of adulthood; and
allowing assisted dying at 18 could expose young people to external pressures, including harmful social media content, and risk sending the message that reaching adulthood means considering death rather than being supported to live.
Predicting life expectancy in young people with life-limiting conditions is particularly complex, making decisions about assisted dying more difficult.

In response, Lord Falconer, the bill’s sponsor in the House of Lords, confirmed his position that the minimum age should remain at 18 but acknowledged concerns about emotional immaturity in those aged 18 to 25. He expressed openness to introducing additional safeguards for this age group and committed to consulting with peers to explore a compromise before the Report stage.

You can find out more about the latest status of the bill here.

England

UK Government announces development of modern service framework for palliative care in England

On Monday 24 November, the Minister of State for Care, Stephen Kinnock, announced that the government is developing a new modern service framework (MSF) for palliative and end of life care in England.

Due to be published in Spring 2026, the framework will be aligned with the ambitions of the 10-Year Health Plan, specifically the shift of care from hospital to the community and will set out the roles and responsibilities of the Department of Health and Social Care (DHSC) and integrated care boards (ICBs).

Through the MSF, the government hopes to drive improvements and enable ICBs to address significant challenges facing the sector, including:

Delays in early identification of individuals approaching the end of life.
Inconsistencies in commissioning practices across integrated care boards (ICBs).
Workforce challenges in both universal and specialist services.
Gaps in 24/7 palliative care provision.
Limited uptake and integration of personalised care and support planning, including advance care planning.

Engagement on the framework has already begun and is set to continue, providing more opportunities to further shape the MSF.

You can read our immediate reaction to the news here.

House of Commons Health and Social Care Committee publishes Expert Panel’s independent evaluation of palliative care

On Friday 28 November, The House of Commons Health and Social Care Committee’s Expert Panel published the findings of its independent evaluation of the state of palliative care in England.

Having previously provided evidence to the Expert Panel, we are pleased to see the report acknowledge many of the significant barriers preventing seriously ill children and their families from accessing high-quality palliative care, when and where they need it.

Key findings mentioned in the report include:

Fragmented commissioning means children’s palliative care is often inconsistently funded across regions. Without clear national standards, families face a postcode lottery in accessing specialist services in hospices and in the community.
Children’s hospices and specialist providers face unstable funding, limiting their ability to plan long‑term. Families report delays in accessing specialist paediatric palliative care, particularly outside of hospital settings.
Community provision is patchy, leaving parents to shoulder significant care responsibilities without adequate support.
Workforce shortages, particularly among paediatric palliative care specialists, nurses, and allied health professionals, undermine service delivery. Training in children’s palliative and end of life care is also inconsistent, leaving many professionals underprepared to support children and families.
Access to children’s palliative care is often unequal, with disadvantaged families, ethnic minorities, and those in rural areas less likely to receive timely, high‑quality support. Furthermore, a reliance on charitable funding for children’s hospices further exacerbates inequities, as provision varies depending on local fundraising capacity.

You can access the full report here.

Government confirms additional £25 million in capital funding for hospices

When giving evidence to the House of Commons Health and Social Care Committee at the start of the year, the Minister of State for Care, Stephen Kinnock, confirmed the government will be providing an additional £25 million in capital expenditure funding for both adult and children’s hospices.

This announcement follows the £100 million of capital funding that was distributed to hospices in 2025.

You can read our reaction to the news here.

National Maternity and Neonatal Investigation launches call for evidence

As part of the National Maternity and Neonatal Investigation led by Baroness Amos, a call for evidence has been launched inviting women and families across England to share their experiences of maternity and neonatal care. The feedback will help shape the investigation’s findings and recommendations.

The call for evidence is open for eight weeks until 11:59 pm on 17 March 2026.

Two surveys are available:

One for women and people who have been pregnant to share their own experiences of maternity and neonatal services.
One for others who supported someone through pregnancy, such as fathers, non-birthing partners, family members, friends, or other support people.

Respondents must be aged 16 or over. Those under 16 can participate only with someone aged 16 or over.

More details, including how to take part, are available here.

This call for evidence follows the publication of the interim report in December 2025, in which Baroness Amos highlighted several concerns, including:

Women not being listened to and concerns about their own bodies being disregarded;
lack of empathy, care or apology both in clinical care or when things go wrong;
failure of regulators to protect women and families, with concerns about organisations ‘marking their own homework’;
failure to address poor behaviour and poor standards of basic care;
and the impact of discrimination against women of colour, working-class women, and those with poor mental health.

Amos also noted the impact of negative publicity on staff, who reported facing death threats and abuse, alongside operational pressures such as inadequate facilities and IT system failures.

The final report and recommendations are expected in Spring 2026.

Northern Ireland

Northern Ireland Health Committee publishes palliative care inquiry report

On Tuesday 2 December, The Northern Ireland Assembly Health Committee published the findings of its inquiry on Access to Palliative Care Services in Northern Ireland. Through this inquiry, the Committee found that children’s palliative care in Northern Ireland is significantly underfunded, creating major barriers to delivering the care children and families need.

Key findings from the inquiry include:

Only 6 out of 10 specialist palliative care beds for children are open due to limited funding.
Community-based and out-of-hours cover for paediatric end of life care is inconsistent and often reliant on the goodwill of professionals.
There is currently no dedicated paediatric palliative care consultant in Northern Ireland (although we know there is a consultant finishing their GRID training, and there is a 12-month locum consultant post at the Royal Belfast Hospital for Sick Children.
Families highlighted difficulties accessing respite services at the children’s hospice due to resourcing issues and funding cuts.
Young people (14+) face a ‘grey area’ between paediatric and adult services, with no clear framework for transition.
Northern Ireland lacks accurate data on children requiring palliative care.
Children with severe neuro-disabilities or rare genetic conditions are less well served compared to oncology patients.

In total, the report includes 27 recommendations. Included within this is a key recommendation calling on the Department of Health to prioritise and invest in children’s palliative care ensuring adequate funding of specialist palliative care beds, a dedicated paediatric palliative care consultant in the hospice and stabilised funding for community-based and out-of-hours cover.

The report also calls for a framework to fully support young people transitioning from children to adult services.

You can read the full report here.

Finance Minister launches public consultation on draft multi-year budget for 2026-2029/30

Finance Minister, John O’Dowd, has launched a public consultation on his draft multi-year Budget for 2026-2029/30, urging people from all sectors to help shape the future of public services.

According to O’Dowd, a multi-year budget will offer government departments the stability required for long‑term planning and transformational reform. However, he has warned that reallocating resources will also involve difficult choices, as increases in one area inevitably mean reductions elsewhere.

Under the draft Budget proposals, around £26 million is earmarked for the health services over the next three years, including £495 million to reduce waiting lists, while almost £10 billion is set to be allocated to education. To improve support for children and young people with Special Educational Needs, the draft Budget so far includes £24 million for the SEN schools estate.

The consultation runs from 6 January to 3 March 2026 with full details available here.

Scotland

Assisted Dying for Terminally Ill Adults (Scotland) Bill completes Stage Two

The Assisted Dying for Terminally Ill Adults (Scotland) Bill has now completed Stage Two, where the Health, Social Care and Sport Committee debated and voted on amendments. Transcripts and videos of the four committee meetings are available here, and the amended version of the bill can also be accessed here.

Key amendments agreed to during Stage Two include:

Increasing the minimum age from 16 to 18 and clarifying that disability or mental health conditions alone do not constitute terminal illness.
Requiring death certificates to list both the underlying illness and the approved substance under ‘other medical information.’
Requiring referral to a psychiatrist if capacity is in doubt and removing the need for nurses acting as authorised health professionals to assess capacity at the time assistance is provided.
Replacing ‘conscientious objection’ with ‘no duty to participate’, while ensuring staff who opt out face no detriment and clarifying that doctors are not obliged to raise assisted dying.
Adding new reporting requirements for doctors to record complications, submit anonymised reports and for ministers to assess the impact on hospices and palliative care, followed by the creation of a code of practice outlining how the services should interact.

You can read more about the amendments agreed to here.

The bill has now entered Stage Three, which allows further amendments to be proposed and voted on by the full chamber, followed by a final debate and vote. While timelines for Stage Three have not yet been published, official indications suggest the final debate may take place in late February or early March.

Scottish Government publishes draft Budget for 2026/27

The Scottish Government has published its draft budget for 2026/27 with a total of £22.5 billion allocated for the health and social care portfolio. This includes approximately £17.6 billion for NHS Boards alongside £2.3 billion for social care and integration. Additional funding aims to support improved terms and conditions for the social care workforce, enhanced primary care access, investment in mental health services, and capital commitments worth £1 billion for hospital replacements and community health infrastructure.

Within the budget, the government has also committed to providing £6.5 million for hospices in 2026/27, with further engagement planned to help achieve pay parity in the sector with NHS staff.

You can access the full draft budget here.

Disability and carer benefit transfer now complete in Scotland

More than 700,000 disability and carer benefit awards have now been successfully transferred from the Department for Work and Pensions to Social Security Scotland, as part of a major multi‑year programme. This means that every carer and disabled person in Scotland who previously received Disability Living Allowance, Personal Independence Payment, Attendance Allowance or Carer’s Allowance is now supported directly through the Scottish system, without needing to reapply or experiencing any break in payments.

The completion of case transfers now covers carers, child disability and working age disability benefits. By the end of December 2025, over 99% of pensioners receiving Attendance Allowance had also moved to the new system, with only the most complex cases remaining.

Wales

Senedd debate on financial support for the hospice and palliative care sector

On 21 January, Members of the Senedd debated the financial pressures facing hospices and palliative care services across Wales. During the debate, members highlighted the importance of hospices in providing holistic care, supporting families, and enabling people to remain at home where possible.

Key points raised by MSs during the debate included:

In November 2025, both Tŷ Hafan and Tŷ Gobaith, were still waiting for confirmation of their share of the £3 million allocated in the Welsh Government’s budget, including timing of payments.
They are calling for sustainable, ring-fenced funding, aiming for funding to cover 30% of care costs by 2030, though this would still be below the average for adult hospices.
Funding for children’s hospices in Wales lags behind funding provided to adult and children’s hospices in England, and that lower spending risks long-term sustainability.

You can read the full transcript here.

Welsh Government publishes final budget for 2026/27

The Welsh Government has published its final budget for 2026/27, providing a total of £27.5 billion. Key allocations in the budget include:

An additional £180 million for the NHS with the health and social care budget increasing by 3.6% to £12.6 billion.
£112.8 million additional funding for local government, with all councils receiving increases of 4% or above.
£4.2 million to support children with additional learner needs.

For commissioned hospices, the budget continues with the additional £3 million of recurring funding that was committed to in 2025/26.