Together for Short Lives
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Our strategy

Every child deserves many moments of happiness together with their loved ones. But for many families who need palliative care, the system is falling short, leaving parents and siblings feeling isolated and alone, and children missing out on life-changing support.​​

Our strategy refresh for 2026–2028, shaped by the voices of families and professionals, means that Together for Short Lives is focussed on what matters most: achieving our purpose to ensure every child, and their family, has high quality children’s palliative and end of life care, when and where they need it. With your support, we can make sure every family can live as well as possible as they navigate their child’s life, death, bereavement and beyond.

In the video below, you can hear from the families, professionals and supporters who inspire our work, and find out what Making Every Moment Count means for the next phase of our journey together.

If things get tough or I need to ask questions I know I can call Together for Short Lives. When I need them, it feels like we’re together.

Dee Cowburn, mother to Tilly, who has Rett Syndrome

Our strategic priorities

We published our current 10-year strategy in 2023. Our new, refreshed strategy reflects the work we have done to adapt and shape Together for Short Lives for our next strategic cycle, the period 2026 to 2028. In doing so, we have listened to families of children living with serious illness and the professionals and services who provide them with palliative care, so we can focus on what matters most to them.

Our strategic ambitions are:

  1. Increase equitable access to children’s palliative care.
  2. Improve the quality of care, ensuring the best support for families.
  3. Strengthen sustainability so families can rely on care where and when they need it.

These are big challenges, and they need big and bold solutions. View our strategy on a page, or keep reading to find out more.

There is an amazing network of children's hospices, NHS teams and other charities around the UK who provide children’s palliative care. It's incredible to think that, through Together for Short Lives, we can all speak with one voice.

Clare Buchanan, mother to Oliver, who died in 2023.

The context we are working in

A greater number of politicians and policymakers across the UK are recognising the amazing impact that palliative care can have for families of children living with serious illness. More understand why it is vital that families can access it, and why it is unacceptable that too many are left isolated and alone by a system that is not meeting their needs.

  • In England, a House of Commons Health and Social Care Committee Expert Panel evaluated the state of palliative care during 2025. It found that inconsistent and poorly informed commissioning is a major barrier preventing children living with serious illness and their families from accessing high-quality palliative care, when and where they need it.
  • A 2025 report by the Commission on Palliative and End of Life Care, of which our Chief Executive, Nick Carroll, was a commissioner, found similar challenges.
  • In 2026, the Children’s Commissioner for England published a report revealing that thousands of children in England spend prolonged periods in hospital – sometimes months or years – not because of medical necessity but because the support required for safe discharge is unavailable.
  • A Northern Ireland Assembly Health Committee inquiry report has found that children’s palliative care in Northern Ireland is significantly underfunded, creating major barriers to delivering the care children and families need.
  • Public debates on proposed assisted dying laws in England, Scotland and Wales have put unprecedented focus on how, as a society, we care for people of all ages at the end of their lives.

The UK Government has acknowledged the challenges facing children and families in England and ministers across the UK have already committed to act, including by developing an all-age modern service framework (MSF) for palliative care for England. They plan to shift access to health and care as close to home as possible.

The Scottish Government’s palliative care strategy and a Welsh Government national service specification include ambitions that children will have more equitable access to well-coordinated, timely and high-quality palliative care.

These commitments are welcome and provide important context to our refreshed strategy.

 

What we have achieved already

Thanks to our amazing supporters, we have made much progress in our first strategic cycle to make sure more families get the support they need.

Across our programmes, we have worked to strengthen support for families of children living with serious illness by improving access to children’s palliative care and equipping professionals, and influencing national policy:

  • Our Morrisons‑funded community outreach project focused on areas of highest need, connecting 1,415 families to services
  • To improve understanding of children’s palliative care among non‑specialist professionals, our Learning to Communicate with Families initiative engaged 199 professionals across health, education, social care, faith groups and the voluntary sector.
  • Our 2025 Conference brought together over 400 attendees to explore best practice and innovation in children’s palliative care, inspiring and reinvigorating professionals.
  • Through our energy support work with SGN and Cadent, we advised more than 125,000 families on heating and safety and provided in-depth assistance to 4,500 families, helping to reduce debt, improve safety and ease financial pressures.
  • We secured £80 million in ringfenced NHS funding for children’s hospices for 2026–2029 – described by Derian House as “a huge campaign win… for children living with serious illness and their families.”
  • Thanks to our campaigning, 19% of local NHS bodies in England now formally commission 24/7 end of life care at home in line with national quality standards, up from 14% in 2024.
  • Through the Kentown Wizard-funded Community Palliative Care Programme, we coordinated nursing, social care and hospice support for families who often struggled to navigate fragmented systems.
  • We have generated vital income to sustain children’s palliative care in the UK. In 2024-25, our supporters helped us to raise and distribute over £2.7 million to support children’s hospices, ensuring they could continue to provide crucial care to children living with serious illness and their families.

The challenges we still face

NHS and voluntary sector children’s palliative care professionals in hospitals, children’s hospices and the community go above and beyond to meet the needs of children living with serious illness and their families. Yet families continue to face a series of challenges in accessing high quality, sustainable support when and where they need it because the system does not work for them.

We have listened to families of children living with serious illness and those who support them, hearing their stories and gathering data to build our insight of the state of children’s palliative care across the UK.

We have grouped these insights by our three strategy priority areas of access, quality and sustainability. Across each one, we are clear about the challenges, why they are important, and what statements we will be able to make if we are successful in achieving our three strategic priorities:

Increase equitable access to children’s palliative care

Key challenge: This is a problem because: If we are successful over the course of our next strategic cycle, we will be able to say:
Less than half of families feel well supported: too many feel isolated and abandoned after their child is diagnosed, lack emotional, practical and financial support, and cannot easily access information and guidance. Without access to palliative care, children living with a serious illness and their families are less likely to have an opportunity to live as well as they possibly can. A majority of families feel well supported with access to care, emotional, practical and financial support and help to connect with other families.
There is a postcode lottery in planning which means that not all families can access palliative care that meets standards for each part of the UK.

For example, only one fifth of local NHS bodies in England commission 24/7 end of life care at home provided by nurses and supported by specialist consultants.

Too many families will continue to experience poor health and wellbeing outcomes. All local NHS bodies across the UK plan children’s palliative care that meets standards.
Access varies according to families’ ethnic and socio-economic background, and transition: we have qualitative evidence to support this, but do not know enough about the full scale of the challenge. Without better evidence and action there will be a widening health inequality and increasing numbers of families will be unable to benefit from the best care and support. We know the full scale of inequalities of access to children’s palliative care and have worked with those impacted to reduce them, to receive equitable care.

Improve the quality of care, ensuring the best support for families

Key challenge: This is a problem because: If we are successful over the course of our next strategic cycle, we will be able to say:
Vacancy rates among the groups of all health and care professionals needed to provide palliative care to children living with a serious illness are too high (including social care and allied health professionals) Workforce challenges mean too many children and families cannot access the palliative care they need, when and where they need it. Vacancy rates are lower among the groups of health and care professionals needed to provide palliative care to seriously ill children (and encompass retention plans, service resilience and digital innovation in use of workforce)
Too few health and care professionals who could provide palliative care to children living with a serious illness have the skills to do so due to inconsistent education and training. If professionals lack the right skills and knowledge, the quality and safety of care for children living with a serious illness is compromised, and providers face higher costs to recruit and retain from a limited pool. All health and care professionals who could provide palliative care to children living with a serious illness have the skills and knowledge needed to do so, underpinned by the right evidence, national frameworks and standardised education and training.
The existing children’s palliative care workforce is not organised effectively across the UK. There is no nationally agreed framework for workforce standards and service models, leading to inconsistency in care quality. A lack of standardisation in service provision, models and frameworks causes many professionals to feel disempowered and lack confidence in caring for children living with a serious illness. The children’s palliative care workforce is organised into regional and national delivery networks across the UK. Sector-wide standards for workforce and service models are defined and embedded through regional and national networks.
There is inconsistent use of data and evaluation of outcomes, and a comparatively low evidence base (compared to adult palliative care) It prevents the ability to replicate and fund the most effective work Nationally agreed quality benchmarks and outcome measures in place, monitored through a shared data and improvement framework and a framework of research priorities and digital tools

Strengthen sustainability so families can rely on care where and when they need it

Key challenge: This is a problem because: If we are successful over the course of our next strategic cycle, we will be able to say:
The NHS does not provide enough funding to sustain services across the voluntary or statutory sector, or to enable children’s palliative care standards to be met across hospitals, communities and children’s hospices: in England, the funding gap is £310 million. If children’s palliative care services are not financially sustainable, they will be unable to provide the support that families need, leaving them without access. The gap in NHS funding for children’s palliative care is filled.
NHS bodies do not have the data they need to show them how many children could benefit from palliative care, or what the complexity of their needs are, in part because there is no clear definition of the population. As the costs incurred by children’s palliative care providers grow, they will be forced to cut the services they provide or restrict families’ access. NHS bodies have access to data about the volume and complexity of the population of children living with a serious illness who could benefit from palliative care, underpinned by a clear definition.
There is no consistent way for children’s palliative care providers to record and report the volume and complexity of the support they are providing. Local NHS bodies are unable to plan and fund children’s palliative care services effectively because they do not know what the demand for this care is. Children’s palliative care providers are funded according to the volume and complexity of the support they provide, based on activity data recorded and reported using consistent approaches.
Funding for children’s hospices from UK-wide charitable sources is not enough to meet growing demand and complexity or deliver non-specialist services. NHS funding for children’s palliative care providers does not match the volume or complexity of the support they are delivering and also does not facilitate the delivery of non-specialist support / services. Children’s hospices receive more money from UK-wide charitable sources.

How we will deliver the next stage of our strategy

We will achieve our goals by focussing our work on three priority areas: direct support, system change and income generation:

Focus area Who we will reach What we will do
Direct support Children living with serious illness and their families Providing information and support directly to families of children living with serious illness (signposting and referring into existing services and working to fill gaps in provision).
System change Policy and decision makers; regional co-ordination A renowned Centre for Evidence and Practice, collaborating, commissioning and sharing significant research and evidence to drive clinical excellence and policy design.
Working with leaders in governments, the health service, commissioning bodies and delivery organisations to improve the funding, quality, and consistency of children’s palliative care.
Income generation Children’s hospice member organisations The children’s hospice partnership fund: a leading fundraising scheme, working together with children’s hospices to secure national corporate partnerships.

 

What our strategy means for you

For families of children living with serious illness and professionals who we will reach through our direct support

We will:

  1. Map the resources and support available to families of children living with serious illness across the whole system, then develop support tools for families where we can add value and signpost and refer to others where support is already available.
  2. Consult families to assess what they need and want, including the support they need with the cost of living and the additional costs of caring for their child.
  3. Provide equitable access to our Family Support Hub, making sure those with the greatest need can receive our direct service offer, which will include support with energy costs.
  4. Pilot artificial intelligence tools (alongside the skills, knowledge and experience of our sector) to develop new guidance and resources for families, professionals and services.
  5. Improve the way we involve families in co-creating our services, our resources and our projects.

For families – and the professionals and services who support them – who we will reach with our work to change the system

We will:

  1. Lead the sector to set shared research priorities (and establish a Centre for Evidence and Practice that improves the sector’s evidence base)
  2. Complete and roll out the new Categories of Care (with the Association of Paediatric Palliative Medicine (APPM). Defining which children may benefit from palliative care, what services should be provided, and what standards professionals should be educated to.
  3. Lead the sector to develop a whole-system vision for the future of UK children’s palliative care.
  4. Develop and implement an effective membership offer that provides clear value across the whole sector.
  5. Ensure balanced and equitable representation for children, families, professionals, and service providers through sector wide consultation (and a strengthened Advisory Council) so that our policy positions and campaigns reflect their views and bring about the change they need.
  6. Lead the development of guidance on service models and workforce standards; sharing best practice in planning, funding and providing children’s palliative care across hospitals, community and children’s hospice settings.
  7. Develop and implement the most effective way for our sector to meet, learn and share through UK-wide events, both online and in-person.

Developing impactful ways for our supporters to connect with our cause

We will:

  1. Conduct a review to reframe our National Fundraising Scheme as a strategic programme that generates income for children’s hospices. We will Identify ways of diversifying our sources of income for the programme and explore opportunities to utilise social impact finance and volunteering to enhance the programme.
  2. Develop a strategy to recruit and retain an active community of patrons and ambassadors to help us deliver our income generation aspirations.
  3. Explore UK-wide opportunities to raise funds for our non-children’s hospice member organisations and teams.
  4. Develop a new income generation strategy and case for support that recognises and prioritises funding needs across the breadth of Together for Short Lives
  5. We will inspire you to support us. And we will show you the amazing impact you are having on families.

For politicians and policymakers

We will help you make sure the families you serve receive high quality, sustainable children’s palliative care they need, when and where they need it – in ways which reduce pressure on the NHS and deliver the best possible value for taxpayers’ money.

Working together as staff and trustees

Delivering this strategy well depends on how we work. We will:

  • Produce a plan for improving and maintaining the wellbeing of our staff, making sure they have the skills they need and develop continuously.
  • Revise the way our Board of Trustees governs the charity.
  • Implement a new process for approving projects and campaigns that ensures they achieve impact, are sustainable and are co-created with families.

Together for Short Lives are an amazing organisation and I’m proud to think that we can make a difference together.

Francesca Lennon, children’s nurse and fundraiser

Contact us, join us and support us. Together we will make sure that children living with serious illness and their families get the care and support they need, when and where they need it.

Because the number of children living with serious illness is so small compared to adults, we need your help so we can shout louder with them. With your support, our refreshed strategy will mean that they can access high quality children’s palliative care, when and where they need it.