Leaders’ Policy Briefing: Key updates

UK-wide

Review of employment rights for unpaid carers

The Department for Business and Trade (DBT) is reviewing employment rights for unpaid carers to determine whether current provisions are sufficient and where improvements may be needed.

Currently, unpaid carers who are employees have the following rights:

• Up to five days of unpaid carer’s leave per year under the Carer’s Leave Act 2023.
• The right to request flexible working arrangements and take emergency time off for dependants.
• Parental leave for those caring for an ill or disabled child.

This review will explore options such as introducing paid leave, with the aim of ensuring carers have rights that reflect modern working practices and can remain in employment if they choose.

The Terms of Reference for the review were published on 19 November, and a public consultation is set to take place in 2026. You can access the Terms of Reference here.

UK Government launches new Child Poverty Strategy

The UK Government has published its long-awaited Child Poverty Strategy, identifying child poverty as a key focus for this parliament. Currently, almost one third (31%) of children live in relative low income, with rates significantly higher among families affected by disability.

The strategy seeks to lift 550,000 children of our relative low income and raise household incomes for 7.1 million children, including 1.4 million in deep material poverty.

Key measures in the strategy include:

• Scrapping the two-child limit for Universal Credit claimants from April 2026.
• Introducing an above inflation increase to the basic rate of Universal Credit, estimated to be worth annually in cash terms £725 for a single parent aged 25 or over or £1135 for a couple with children by 2029/30
• Expansion of free school meals to all children in households in receipt of Universal Credit.
• £600 million investment in the Holiday Activity and Food programme in England over the next three years.
• Extension of the Warm Homes Discount to an additional 2.7 million households in Great Britain.
• Increasing the maximum amount of childcare costs that can be reimbursed when more than two children are in childcare.
• Best Start Family Hubs – improving support locally with SEND co-ordinator.

You can access the full strategy here.

England & Wales

House of Lords debate amendment to increase minimum age requirement of Terminally Ill Adults (End of Life) Bill

On Friday 5 December, the House of Lords debated Baroness Berger’s amendment to raise the minimum age for assisting dying from 18 to 25. During the debate, Baroness Berger set out the rationale behind the amendment, arguing 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 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.

Ultimately, the amendment was withdrawn after debate, with Lord Falconer reiterating his commitment to consider safeguards for those aged 18 to 25 ahead of the next stage.

You can read the full transcript here.

England

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.

Baroness Amos publishes interim report from maternity services review

Baroness Amos has published the first report from the rapid national investigation into maternity and neonatal services in England, launched by the Health Secretary, Wes Streeting in June.

In her initial reflections, Baroness Amos described the situation as ‘much worse’ than anticipated, citing unacceptable care, preventable tragedies, and ingrained poor practices despite 748 previous recommendations since 2015.

Key issues highlighted include:

• 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.

As the review progresses, next steps involve more site visits to hospital trusts and the launch of a call for evidence for families in January 2026. This call for evidence will be open for 8 weeks. The final report and recommendations are still set for publication in Spring 2026.

Government launches national conversation on SEND and announces £3 billion of investment

The UK Government has launched a national conversation on reforming the SEND system. As part of a public engagement campaign, the Minister for School Standards, Georgia Gould, will host nine face-to-face events and five online sessions in partnership with the Council for Disabled Children.

These events will seek to involve families directly in shaping the reforms and will cover the department’s five key principles of reform:

• Early intervention – providing support earlier in children’s lives when it can have the greatest impact.
• Local provision – enabling young people to learn close to home alongside peers, while recognising the vital role of specialist provision for complex needs.
• Fairness – ensuring schools have the resources and capability to meet changing needs, with clear legal safeguards for children and parents.
• Effective practice – embedding evidence‑based approaches to secure strong long‑term outcomes.
• Shared working – strengthening collaboration between education, health, care services, local government, families, teachers, experts and representative bodies.

Following the publication of the Schools White Paper early next year, a formal consultation will also follow to continue the conversation on reform.

Alongside this engagement, on Thursday 11 December, the Department for Education announced a £3 billion investment to create around 50,000 specialist places in mainstream schools.

This comes as the number of young people with SEND has risen to at least 1.7 million—an increase of 400,000 pupils since 2020. The investment is intended to reduce travel times for children, provide tailor‑made spaces with appropriate facilities, and enable integration into other classes where suitable.

Final draft of Career Pathway and Education Framework for palliative and end of life care released

NHS England (NHSE) has released the final draft of a Career Pathway and Education Framework for palliative and end of life care, incorporating a Qualification in Specialism Standard (QSS). This national framework outlines a structure for how the workforce can be developed to meet rising demand and address critical skills gaps.

The framework includes:

• A career pathway identifying the seven levels of practice, from supportive roles to consultant level, with clear expectations for knowledge, skills, and qualifications.
• Core Capabilities in Practice (CiPs) setting standardised competencies across four pillars—clinical care, leadership, research, and education—to ensure safe, person-centred care.
• An education framework and qualification in specialism standards outline Structured learning routes, including ‘Foundations’ and ‘Fundamentals’ modules, plus postgraduate options for advanced and consultant roles.

The framework aims to help practitioners develop their careers, strengthen service quality, and ensure every person receives compassionate, evidence-based care at the end of life.

For more information, watch the recording of Hospice UK’s Big Conversations webinar from Tuesday 9 December, where Professor Vanessa Taylor discussed the new framework.

Update on NHS England’s plans to progress the neighbourhood health model

At a recent Health Policy Influencing Group meeting, NHS England (NHSE) provided an update on its plans to progress the neighbourhood health model. Here, NHSE confirmed that integrated care boards (ICBs) are expected to implement six key steps by April 2026. These steps include:

1. Agreeing neighbourhood footprints of around 50,000 people.
2. Agreeing a plan to tackle unwarranted variation in access to general practice.
3. Continuing to improve interfaces between primary, community, mental health and secondary care.
4. Agreeing plans with local partners to establish integrated neighbourhood teams for high-priority cohorts.
5. Agreeing an initial plan to reduce non-elective admissions.
6. Starting to plan for a new neighbourhood approach for elective pathways.

NHSE also noted that Health and Wellbeing Boards are being asked to develop and publish an initial strategic neighbourhood health plan by April 2026, followed by a more comprehensive plan in April 2027.

To assist with the development of neighbourhood health centres, NHSE also outlined five archetypes including refurbished hubs, repurposed civic spaces, cohort-specific facilities, purpose-built centres and virtual models

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 access the full report 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 now yet been published, official indications suggest the final debate may take place in late February or early March.

Wales

Senedd to vote on powers to shape Assisted Dying Law

On Tuesday 20 January, members of the Senedd will vote on a Legislative Consent Motion (LCM) relating to the Terminally Ill Adults (End of Life) Bill.

Importantly, this vote does not decide whether assisted dying should be legal in Wales. Instead, it will determine whether Wales has the powers to shape how the law is implemented for its people.

The LCM covers a small number of clauses designed to ensure Wales can tailor its own approach to assisted dying. These include:

• Ensuring people can provide information, undergo assessments, and receive reports in Welsh.
• Allowing Welsh Ministers to issue guidance that reflects the needs of Welsh communities.
• Enabling the Welsh healthcare system, including NHS Wales, to provide assisted deaths.
• Ensuring Wales is involved in monitoring and reporting on how the system operates.

If the Senedd refuses consent but the Bill passes at Westminster, Wales will lose the powers required to develop a public service‑led, Wales‑specific system.