NHS commissioning of children’s palliative care in England 2026
Every child deserves many moments of happiness together with the people they love. For many, children’s palliative care is what makes those moments possible – bringing together a range of professionals and services to support families through their child’s life, death, bereavement and beyond.
Often spanning many years from diagnosis through to end of life and bereavement, the fundamental aim of children’s palliative care is to promote the best possible quality of life. Giving families real choice is therefore key: a choice of place of care, a choice of place of death; and a choice of emotional and bereavement support.
Unfortunately for many, real choice is hard to come by. Our new report, ‘Home first, except when it matters most’, reveals that the commissioning of children’s palliative care remains highly inconsistent across England. Despite national quality standards and a legal duty on integrated care boards (ICBs) to commission palliative care that meets local need, there is significant variation in how key services are formally planned and funded.
This variation is particularly stark when it comes to the commissioning of 24/7 end of life care at home, provided by nurses and supported by advice from specialist consultants in paediatric palliative medicine.
Read our full report here.
Our research has found
- Only 31% of ICBs provided evidence that they formally commission 24/7 end of life care at home in line with national quality standards. More than a third (36%) were unable to provide evidence that they commission this support.
- There is a postcode lottery in children’s palliative care commissioning. We have found significant variation in the extent to which ICBs commission services in line with national quality standards covering advance care planning, specialist medical leadership, emotional and psychological support, multidisciplinary care involving specialist paediatric palliative care teams, bereavement support and respite care.
- Evidence gaps undermine confidence in commissioning arrangements. While all ICBs responded to our Freedom of Information requests, 43% were unable to provide a service specification or similar documentation showing how their commissioning aligns with national quality standards.
- Managed Clinical Networks are under threat. These networks help coordinate children’s palliative care services across regions, reduce fragmentation and improve quality. However, some ICBs have begun withdrawing funding, putting progress at risk.
Explore children’s palliative care commissioning in your area
Our interactive maps allow you to explore how children’s palliative care is commissioned across England.
Use the maps below to compare local commissioning arrangements and see how ICBs are performing against key national quality standards.
You can view:
- The extent to which ICBs commission 24/7 end of life care at home and how they perform against other key NICE quality standards.
- ICBs that were able to provide a relevant children’s palliative care service specification, evidencing their commissioning claims.
- ICBs that have completed an Ambitions for Palliative and End of Life Care self-assessment and were able to provide this.
Read the full FOI responses in our ‘Home first, except when it matters most’ report.
➡️ Use the arrows below to explore the maps.
*Please note that these findings are based on responses to freedom of information requests sent to ICBs in October 2025. Because the requests were issued before ICB clustering arrangements were finalised, they relate to the 42 ICBs in existence at the time.
Local NHS commissioning of children's palliative care across England in 2025/26
This map shows the extent to which integrated care boards (ICBs) could evidence commissioning children’s palliative care services in line with national quality standards.
Integrated care boards that possess a relevant children's palliative care service specification
This map shows the extent to which integrated care boards (ICBs) possess service specifications that are relevant to children’s palliative care and can evidence their commissioning claims.
Integrated care boards that have completed an Ambitions for Palliative and End of Life Care self-assessment
This map shows the extent to which integrated care boards (ICBs) have completed an Ambitions for Palliative and End of Life Care self-assessment and were able to evidence this.
Our recommendations
The government’s forthcoming Modern Service Framework (MSF) for Palliative and End of Life Care provides a vital opportunity to address variation in children’s palliative care commissioning.
While the government’s interim update on the MSF was welcome, we are concerned that babies, children and young people are no longer explicitly referenced in the framework’s overarching palliative and end of life care goal. Without a clear requirement to consider their needs, there is a risk that children’s palliative care will continue to be overlooked in future commissioning decisions.
We therefore call on the government to:
- Ensure babies, children and young people are specifically mentioned in the wording of the government’s overarching palliative and end of life care goal within the MSF.
- Examine whether children’s palliative care would be more effectively commissioned at a national or regional level to create economies of scale and reduce variation.
- Consider a model in which specialist paediatric palliative care, as defined in the specialist tier of NHSE’s children’s palliative care service specification, is commissioned at a regional or national level to reduce variation and improve accountability.
- Direct ICBs to work with neighbouring ICBs in their region to commission targeted and universal tiers of children’s palliative care as set out in NHSE’s service specification.
- Establish clear accountability mechanisms to underpin the MSF and ensure its implementation, including actions that will be taken if ICBs do not meet the required expectations.
- Provide ringfenced funding, that increases in line with inflation, to secure the future operation and sustainability of paediatric palliative care managed clinical networks.
Children with life-threatening conditions, life-shortening conditions and severe medical complexity deserve access to high-quality palliative care regardless of where they live.
Whether a family can access emotional support, respite care, specialist multidisciplinary services or end-of-life care at home should not depend on their postcode.
Read our full report here.
Previous reports and submissions examining the state of the children’s palliative care sector are available here:
Built to Last? The state of children’s palliative care in 2025
Short lives can’t wait: the state of children’s palliative care in 2024
A workforce in crisis: children’s palliative care in 2019
The state of the UK children’s hospice nursing workforce: A report on the demand and supply of nurses to children’s hospices: April 2017
Reforming healthcare education funding: creating a sustainable workforce: A written submission from Together for Short Lives
Facing the facts, Shaping the Future: A response from Together for Short Lives