Too many families of children with serious illness may be missing out on the care that helps them spend precious time together at home, our new report has found.
In Home first, except when it matters most, we reveal significant variation in how local NHS bodies in England commission children’s palliative care. Our analysis of Freedom of Information responses from integrated care boards (ICBs) found that just 31% could definitively say they commission 24/7 end of life care at home for children.
Our findings suggest that access to key services can depend on where a family lives. Analysis of Freedom of Information responses we sent to ICBs in England also found that only:
-
33%
could demonstrate that commissioned services provide a named medical specialist to lead and coordinate a child's care.
-
26%
could evidence commissioning multidisciplinary teams that include members of specialist paediatric palliative care teams.
-
43%
of ICBs were unable to provide a service specification, or similar evidence, to underpin claims about what they commission
We believe this shows why babies, children and young people must be explicitly included in the government’s forthcoming Modern Service Framework for palliative and end of life care – a major new policy for the sector.
“Palliative care gave our family choice”
Behind these findings are families like Sarah Buchan Cooke’s. Sarah, a London-based mother-of-two, knows how much difference children’s palliative care can make after her son Dylan was diagnosed at 18 months with Sandhoff disease, a rare neurodegenerative condition.
With coordinated support from specialists at Great Ormond Street Hospital, community nurses, and her local children’s hospice, Haven House, including its hospice-at-home service, Dylan spent most of his life at home with his family, surrounded by the people who knew and loved him best.
We know that this kind of care can help families make the most of the time they have together. For Dylan, it meant receiving the care he needed in familiar surroundings. When he died in January 2023, shortly before his fourth birthday, his parents’ wish for him to die at home was fulfilled. He remained at home for several days afterwards, giving family and friends precious time to say goodbye.
Sarah said: “Palliative care gave our family something fundamental – choice. It helped us understand that hospital was not the only option, and that the right support could keep our family together at home – not just at the end of Dylan’s life, but throughout his life.
And at the end of his life, it was a beautiful thing to have him at home. I can’t really imagine it any other way. It breaks my heart to think of other families in our situation, not being able to have that same level of care and support.
Sarah, Dylan's mum
Why the Modern Service Framework matters
The government is developing a new Modern Service Framework (MSF) for palliative and end of life care. We are warning that if the framework does not clearly include babies, children and young people, the current postcode lottery in children’s palliative care could get worse.
We previously joined Sarah, a coalition of children’s charities and leading children’s health professionals in writing to then-Care Minister Stephen Kinnock, calling for babies, children and young people to be explicitly referenced in the overarching goal of the MSF. We are now calling on his successor Alison McGovern to make them a clear and explicit priority within the framework.
Nick Carroll, Chief Executive of Together for Short Lives, said: “Sarah’s experience demonstrates why access to coordinated children’s palliative care is so important. For families caring for a child with serious illness, the right support can make an enormous difference, helping them navigate complex challenges and make every moment count.
Ministers developing the Modern Service Framework have an unparalleled chance to firmly put babies, children and young people who rely on palliative and end of life care at the heart of it. It would send a clear and vital signal to ICBs that they must plan and deliver for children as well as adults, helping to eliminate the postcode lottery affecting so many families across the country.
Nick Carroll, Chief Executive of Together for Short Lives
