Leaders' Briefing: Key updates - Together for Short Lives

Keeping you up to date on sector news and our work

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 & 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.

The funding is 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 about how and when the funding will be distributed in 2026/27 as soon as possible. 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.

Adjournment debate on government support for children’s hospices in the South East

Later in the day on Thursday 16 October, Alison Bennett, Liberal Democrat MP for Mid Sussex and spokesperson for care and carers, secured a House of Commons debate on government support for children’s hospices in South East of England.

During the debate, Alison welcomed the Government’s announcement that morning of £80 million of support for children’s hospices. She stated that the three-year settlement would allow hospices to plan and deliver services over a longer timeframe, ensuring continued access to hospice care for seriously ill children and their families. However, despite acknowledging it as a step forward, she stressed it would only slow the rate of service cuts rather than solve the underlying financial instability.

Citing our figures, Alison also outlined issues facing the wider children’s palliative care sector and repeated our calls for urgent reforms in commissioning, workforce investment, and equitable funding distribution to ensure sustainability and fairness across the children’s palliative care sector.

In response, Minister for Care Stephen Kinnock reaffirmed the UK Government’s commitment to long-term support, confirming the continuation of the £26 million annual revenue funding for children’s hospices until 2028/29. He acknowledged the sector’s challenges and outlined plans for strategic commissioning, improved data collection, and integration of hospices into the broader neighbourhood health strategy.

While adult hospices were not included in the same funding model, he indicated ongoing discussions about their financial framework.

You can read the full debate transcript here.

Commons oral question further presses government on children’s hospice funding

On Tuesday 21 October, the MP for Poole, Neil Duncan-Jordan welcomed the announcement of up to £80 million in funding for children’s hospices over the next three years during House of Commons Health and Social Care Oral Questions.

However, recognising that many challenges are still in need of addressing, Duncan-Jordan cited key issues in accessing funding from local NHS bodies and councils, addressing workforce shortages and holding ICBs to account for the way in which they commission children’s palliative care.

You can watch the oral question here.

Government launches call for evidence on 10-Year Workforce Plan

The UK Government is seeking views and evidence from healthcare organisations and those with expertise in workforce planning to help shape the new 10-Year Workforce Plan.

This workforce plan will build on the vision outlined in the 10-Year Health Plan and set out how a new workforce model will be delivered to support the three key shifts:

Hospital to community
Analogue to digital
Sickness to prevention

Rather than a formal consultation on specific proposals, this call for evidence seeks views on the government’s plans for the next decade and invites responses to share examples and case studies that will support the delivery of the plan.

The government wants to hear from anyone with relevant evidence, including:

Trade unions
Royal colleges
Employers
Charities
Those with expertise by experience

The call for evidence will close at 11:59pm on 7 November 2025. More information and ways to respond can be found here.

Education Select Committee publishes report on solving the SEND crisis

The Education Select Committee has published a new report outlining the findings from its inquiry into the SEND system. Recognising that the number of children with SEND has grown, the report notes the significant challenges facing families and offers several recommendations for how the SEND crisis might be solved.

Key issues and recommendations mentioned in the report include:

Inclusive education: Despite significant numbers of children with SEND in mainstream schools, they lack the design and resources needed for inclusion. National standards are needed alongside investment in whole-school approaches to reduce reliance on EHC plans.
Trust and accountability: Inconsistent provision, delays in support, lack of transparency in decision-making and a failure to deliver on legal duties has meant confidence in the system is low. Stronger accountability of mainstream schools, ensuring inclusive practices are crucial to ensuring policies and reforms are implemented.
Workforce and capacity: Realising an inclusive vision also depends on equipping professionals, across education, health and social care, with better training and support. With shortages in educational psychologists and therapists contributing to assessment delays, a dedicated SEND workforce plan is needed.
Funding stability: Local authorities face growing deficits and uncertainty. A long-term funding strategy is therefore vital to ensure sustainable, high-quality provision.
Cross-sector collaboration: Collaboration must be strengthened if the vision of inclusive mainstream education is to be achieved. Clear statutory duties for health and social care services in relation to SEND should be introduced along with a national SEND lead in health.
Specialist capacity: Oversubscribed specialist state schools is resulting in a reliance on costly out of area or independent specialist placements. A coordinated approach by implementing longer funding cycles and comprehensive data collection is needed.
Early years: Despite its importance, early intervention is underfunded. Programmes like ELSEC and NELI should be universally rolled out, and the Best Start for Life initiative must fully include SEND.
Post-16 support: Young people face a ‘cliff edge’ after 16. The system must offer broader pathways and reform GCSE resit policies to better support SEND learners.

You can access the full report here.

Northern Ireland

Review of population health needs of children with complex medical needs attending Special Education Needs (SEN) schools

The Department of Health has published a detailed report reviewing the population health needs of children with complex medical conditions attending Special Educational Needs (SEN) schools across Northern Ireland. The report reveals that while only 4.55% of pupils require intensive medical support, regional inconsistencies, workforce pressures, and a lack of coordinated policy are impacting care quality and access.

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:

Develop mechanisms to capture lived experiences to inform personalised care.
Review the CCN and classroom assistant workforces collaboratively and in line with increasing demand.
Commission a regionally agreed training programme—potentially via the HSC Clinical Education Centre (CEC)—to support staff in managing complex health needs.
Strengthen partnerships between Health and Education to ensure multi-disciplinary support is embedded in the statementing and review process.
Develop consistent, multi-disciplinary models to meet both health and therapeutic needs.
Include Health and Social Care professionals in statutory assessments to better inform SEN statements.
Establish a minimum data set and protocols for data sharing across sectors to support evidence-based planning.
Ensure the NIPEC framework includes delegation of healthcare interventions within SEN settings.
Create cross-departmental policies with clear commissioning agreements and funding streams to support consistent service delivery.

You can read the full report here.

Scotland

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.

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

In addition, the specification notes the importance of:

Ensuring access to the expertise of specialist palliative care teams that function as integrated services across different care settings.
Delivering the vision for Wales as outlined in the National Framework for the Delivery of Bereavement Care in Wales.
Providing enhanced support, training and respite services to ease the emotional ad physical burdens faced by 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.

You can access the full service specification here.

New national guidance to support bereaved children and young people in Wales

The National Programme for Palliative and End of Life Care has issued new guidance to support bereaved children and young people up to the age of 25 in Wales. Developed by the National Bereavement Steering Group, this guidance sets out a clear framework for Local Health Boards and multi-agency partners to create regional pathways of support that are compassionate, inclusive, and tailored to developmental needs.

The guidance includes:

Practical support for children and young people before and after a bereavement
Advice on trauma-informed and culturally responsive care
Alignment with the NEST Framework and Whole School Approach
A strong focus on equity, Welsh language provision, and multi-agency collaboration

This work has been shaped by the voices of bereaved children and young people, their families, voluntary organisations, and professionals across Wales. Their input ensures the guidance reflects real experiences while remaining ambitious and practical to implement.

You can access the guidance here.

Welsh Government continues bereavement support for families

To mark the start of Baby Loss Awareness Week, the Welsh Government has 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.

With new bereavement care standards due to be published soon, Sands has also been commissioned to engage families and train healthcare professionals to ensure the new standards are implemented.

Together we support

Energy poverty training

Our Services and Impact team has successfully delivered our final Cadent event to help professionals identify and support families of seriously ill children who are facing energy poverty. These received excellent feedback from attendees.

Don’t worry if your team missed out – you can access the training here.

Supporting care professionals

We know that too many families struggle to get the lifeline care they need. That’s why we champion and campaign for children’s palliative care services and professionals, to help children get the best support possible. Find out about the many ways Together for Short

Leaders’ Briefing: Key updates