This autumn has already brought a flurry of policy developments for seriously ill children and their families—and there’s still more to come. So far, we’ve seen multi-year NHS funding announced for children’s hospices in England, a new palliative care strategy launched in Scotland, and Wales formally introducing a national service specification setting agreed standards for palliative and end of life care. With the Autumn Budget still ahead, this roundup looks at the key updates so far and what they mean for families.
UK-wide
King’s College London launches new projects to improve care for children with life-limiting conditions
Researchers at King’s College London have begun work on two new research projects aiming to build an evidence base to improve the support and care available to children with life-limiting conditions and their families across the UK.
Funded by Kentown Support and led by Professor Lorna Fraser, the first project will examine how social care services can better meet the needs of families. Data and insights will be gathered from parent interviews and professional focus groups, with collaborative workshops identifying urgent changes and future research areas.
The second project will explore the education and training needs for parent carers of children with medical complexity. Building on recent work by Dr Bethan Page (Lecturer in Child Health and Palliative care), this project will identify gaps in existing support, and inform the development of improved, more consistent training resources.
You can read more about the two projects here.
England and Wales
Terminally Ill Adults (End of Life) Bill passes second reading in the House of Lords
On Friday 19 September, the Terminally Ill Adults (End of Life) Bill passed its second reading in the House of Lords. The bill was given a second reading in the Lords without a vote and is now set to enter its committee stage from 14 November onwards.
Over two days of debate, nearly 200 peers made their views known on the bill.
While we are disappointed implications of the bill for seriously ill young people, young adults, their families and the professionals and services that support them are yet to be raised during the debate, we remain committed to advocating for certain key amendments.
Our amendments would help to better prepare families and palliative care professionals and services with the skills, knowledge and guidance they will need to hold difficult conversations about the choices available at the end of a young adult’s life if an assisted death was available.
As we progress towards Committee Stage, we are urging peers to work with us, and table our proposed amendments.
England
UK Government maintains and increases funding for children’s hospices in England
On Thursday 16 October, the UK Government announced that it will maintain and increase ringfenced NHS funding for children’s hospices in England, formerly known as the Children’s Hospice Grant, over a three-year period, beginning in 2026/27.
Currently worth £26 million in 2025/26, ministers have committed to extending the funding over a three-year period with inflationary uplifts each year.
Securing this funding commitment represents a significant campaign win for seriously ill children, the children’s hospices who provide them with lifeline care and support and Together for Short Lives.
We will now work with officials to achieve clarity as soon as possible about how and when the funding will be distributed in 2026/27. We will play a full role in working with the government, the NHS and with children’s hospices to make sure the money is distributed equitably.
We will also work constructively with the Department of Health and Social Care as it develops its three-year all-age palliative care delivery plan and its long-term workforce strategy. We remain committed to working with the government to ensure that the momentum created by this announcement is maintained and that other key challenges in workforce, funding and commissioning are also addressed.
You can read our full reaction to the announcement here.
Ending children’s palliative care postcode lottery now Liberal Democrat party policy
At their autumn conference in September, the Liberal Democrats voted to adopt a new policy stating that the postcode lottery in children and families’ access to palliative care must end. Specifically, the policy calls for a national strategy to improve the availability of 24/7 palliative and end of life care support in community settings.
Noting the variation in local areas in England meeting the required standard for 24/7 end of life care for children and young people at home, the policy also calls for a review of the way in which children’s palliative care is planned and funded.
We’re working with the Liberal Democrats and all of the political parties at Westminster to make sure that seriously ill children across England can access sustainable palliative care, when and where they need it, in hospital, in the community and in children’s hospices.
Martha’s Rule rolled out to all acute hospitals in England
NHS England have announced that Martha’s Rule is now available in every acute hospital in England.
Since April 2024, Martha’s Rule has been trialled in 143 hospital sites. New data has now revealed that between September 2024 and June 2025, 4,906 calls were made to the Martha’s Rule helplines to escalate concerns, resulting in 241 potentially life-saving interventions.
According to this new data, nearly three quarters of calls (71.9%) came from families seeking help, with 720 calls leading to changes in care, such as the administration of new medications like antibiotics.
Additionally, 794 calls addressed clinical concerns, including delays in medication or investigations, while a further 1,030 calls helped resolve issues related to communication and discharge planning.
Law Commission recommends changes to disabled children’s social care law
The Law Commission has completed its review of disabled children’s social care law and published its final report.
They have set out dozens of points for the UK Government to consider following a review which has aimed to modernise and simplify the law on disabled children’s social care in England. The commission has sought to better meet the needs of young people and their families and has highlighted some outdated and ‘offensive’ language.
The Law Commission recommends keeping disabled children within Children Act protections while introducing a discrete set of rights and entitlements for disabled children into the Act. It is said that the new, unified legal framework would establish England-wide eligibility criteria, ending the current postcode lottery where a disabled child in one part of the country will have their needs met but a child in another part of the country with identical needs will not.
Children’s commissioner publishes new report setting out how the education system could be reformed
Dame Rachel de Souza, the Children’s Commissioner for England, has published a new report outlining the findings of a survey issued to schools and colleges across England. The report notes some of the significant challenges schools face in meeting children’s needs, explores the factors driving these challenges, and proposes a series of recommendations.
Recognising the fact that the proportion of pupils with EHCPs has continued to grow over recent years, the survey asked schools about the barriers they face to fulfilling an EHCP. Here, it was found that the main barrier for both primary and secondary schools was funding not matching need. A lack of specialist staffing was the second biggest reason.
The report also proposes a series of recommendations ahead of the government’s white paper on education expected later this year. Recommendations include:
- A national statement of ambition for all children.
- A new focus on a broader range of additional needs for those who need support inside and outside the classroom.
- Extra help for schools to deliver targeted and specialist support where needed, and deepen their role, impact and orientation in communities.
- A new approach to statutory education support: Education, Health and Care Plans.
- Delivering opportunity locally – Local Opportunity Mission Delivery Boards.
- The critical role of special schools and alternative provision.
- Services beyond the school gate.
Northern Ireland
Access to palliative care services inquiry report expected this autumn
Over the past year, the Committee for Health in Northern Ireland has been undertaking an inquiry into accessing palliative care services. As part of the inquiry, the Committee has gathered the views of families, professionals and organisations.
On 3 July 2025, the Committee concluded its evidence gathering and is now working to compile this into a report which will be presented to the Northern Ireland Assembly in the Autumn Session.
More information can be found here.
Review of population health needs of children with complex medical needs attending Special Education Needs (SEN) schools
The Department of Health has published a report on the health needs of children with complex conditions in Northern Ireland’s SEN schools. While only 4.55% of pupils need intensive medical support, care quality is affected by regional inconsistencies, workforce pressures, and a lack of coordinated policy.
Key issues identified in the report include:
- Despite the principle that all children with SEN must receive the right care, at the right time, by the right person, in the right place to ensure equitable access to education, significant regional variation in care models undermines this.
- Currently 884 classroom assistant support 341 children with delegated healthcare tasks overseen by just 69 community children’s nurses (CCNs), adding pressure to both education and health staff.
- Only 17.5% of special schools have an on-site CCN nurse, despite no formal commissioning or governance structure. The lack of a regionally agreed policy contributes to confusion among families, educators, and health professionals.
- The Department of Education allocates £77.5 million for classroom assistants, but the Department of Health lacks a commissioned service to support medical needs in schools.
- Education collects data through the census and SARS, but Health lacks a centralised system. A unified, standardised data approach is needed to inform service design and resource allocation.
The report also makes a series of recommendations to enhance the capturing of lived experience to inform personalised care, review workforce capacity, improve training to support staff in managing complex health needs and strengthen partnerships between health and education.
Scotland
New palliative care strategy launched alongside delivery plan for 2025-28
On 10 September 2025, the Scottish Government launched its new palliative care strategy, ‘Palliative Care Matters for All (2025-30)’, alongside a three-year delivery plan (2025-28). The strategy aims to ensure that by 2030:
- Adults and children have fair access to timely, high-quality palliative care and bereavement support.
- Families and communities feel empowered to plan ahead and talk openly about serious illness, dying, and bereavement.
- People can plan for future changes in health and care with their loved ones.
Eight outcomes underpin the strategy, including one focused on babies, children and young people. It commits to improving support for families and ensuring paediatric palliative care needs are recognised, including during transitions to adult services.
Key actions include:
- Building on existing local and national telephone services to expand 24/7 access to support and advice.
- Further developing the national Paediatric Palliative Care Clinical Advisory Service so staff providing palliative care for children have 24/7 access to specialist paediatric palliative care telephone advice supported by a consultant.
- Developing guidance to support improved care transitions for babies, and for young people who have life shortening conditions.
- Developing an agreed Scottish minimum dataset for all paediatric palliative care services that is used to support service commissioning, delivery, monitoring, and reporting.
- Establishing a strategic collaborative planning group to support commissioning, financial and services planning, delivery and reporting of measurable outcomes data for paediatric palliative care services across Scotland.
It is said that strategy delivery reports will be published on an annual basis to provide updates on progress to implement individual actions. These reports will also include any measurable changes in nationally available data and other relevant measures.
McArthur sets out amendments to assisted dying bill
On Friday 10 October, Liam McArthur MSP lodged a series of amendments to his Assisted Dying for Terminally Ill Adults (Scotland) Bill ahead of Stage 2 scrutiny by the Health, Social Care and Sport Committee, which begins on 4 November.
Relevant amendments lodged by McArthur include:
- Clarifying that Scottish Ministers can determine the required level of qualification and experience for registered medical practitioner or registered nurses performing the role of authorised health professionals.
- Replacing the previous conscientious objection provision with a ‘no-duty to participate directly in assisted dying’ clause. Alongside the training that any health care professional will complete in order to undertake assisted dying provision, this has the effect of creating an ‘opt in’ system rather than it being the responsibility of medical professionals to ‘opt out’.
- A duty on Scottish ministers to provide accessible and understandable information to terminally ill adults, health and care professionals and the general public.
- Inclusion of the approved substance provided to an individual in addition to the terminal illness that contributed to their death on the death certificate.
Additionally, McArthur has confirmed his support for an amendment from Sandesh Gulhane MSP to raise the minimum age of eligibility to 18, having previously indicated openness to such a change.
Scottish Health Secretary seeks UK Government view on legislative competence of Assisted Dying Bill
The Cabinet Secretary for Health and Social Care, Neil Gray, has confirmed that a formal request will be made by the Scottish Government to the UK Government to address legislative competency issues surrounding the Assisted Dying for Terminally Ill Adults (Scotland) Bill.
Gray confirmed that discussions with Westminster are ongoing and that proposals are being developed to resolve areas of the Bill that fall outside devolved powers. These include the regulation of health professionals and the specification of the substance used in assisted dying, both of which are reserved matters.
In June, Gray wrote to the Health, Social Care and Sport Committee noting that he had asked the UK Government for its views on what steps it might take to help resolve these issues. He also acknowledged the tight timeline ahead of the May 2026 Holyrood election.
You can read his letter to the Health, Social Care and Sport Committee here.
Wales
New national service specification for palliative and end of life care launched
The new national service specification for palliative and end of life care has been officially launched, establishing clear standards for the provision of high-quality, equitable and person-centred care. At the heart of the specification are five key service features:
- Timely and equitable access to palliative care
- Personalised, holistic and compassionate care
- Coordinated and integrated services
- Skilled workforce and continuous learning
- Leadership, governance and quality improvement
It also emphasises the importance of specialist palliative care teams working across all settings, delivering Wales’ bereavement care vision, and providing better support and respite for unpaid carers.
Recognising current challenges and demographic projections, the specification lists several priority actions for NHS Wales to focus on:
- Expand capacity of community teams to support growing demand for home-based care and ease hospital pressures.
- Strengthen access to district nurses (DN) / Community children’s nurses (CCN) and clinical nurse specialists (CNS) to ensure consistent 24/7 access to palliative care.
- Establish sustainable, equitable funding models to ensure reliable hospice access across Wales.
- Expand provision for patients with complex needs and multiple conditions to address existing gaps where available services fall short of this specification now and as it evolves.
- Increase access and funding to Allied Health Professional roles, embedding in teams to support holistic care.
- Enhance telehealth and remote monitoring to improve access, particularly in rural areas.
- Improve data collection and use, including activity, cost, outcomes and experience areas where gaps remain.
Establishment of a Maternity and Neonatal Oversight Panel
In May 2025, the Welsh Government launched a nationally commissioned assurance assessment of maternity and neonatal services to evaluate their safety and quality. This assessment will focus on measuring services against the criteria within the National Quality Statement and Quality Standards to identify areas of good practice and areas of concern.
Earlier in September, the Cabinet Secretary for Health and Care, Jeremy Miles MS announced the appointment of a Maternity and Neonatal Oversight Panel. Made up of experts in healthcare, social care and patient experience, the panel will be a time limited group to provide an independent assessment of Wales maternity and neonatal services.
The panel, chaired by Professor Sally Holland, will begin work in September 2025 and deliver initial advice by 31 December 2025.
The Minister has offered to meet with families once recommendations are made and is open to further statements or questions from Members when the Senedd returns.
You can read more about the panel appointments here.
Welsh Government continues bereavement support for families
During Baby Loss Awareness Week, the Welsh Government announced the extension of baby loss bereavement care support for families affected by:
- Miscarriage
- Termination for foetal anomaly
- Stillbirth
- Neonatal death
- Sudden unexpected death in infancy
The initiative includes developing pathways to support access to:
- Counselling
- Memory-making opportunities (e.g. handprints, photos, keepsakes)
- Tailored information resources
- Referrals to charities and support organisations
A £35,000 investment is being made to support SANDS, a leading baby loss charity, in delivering this care. Sands has also been commissioned to engage families and train healthcare professionals to ensure the new standards are implemented.
