What the NHS’s new children’s health plan means for your family
Many families raising a seriously ill or disabled child already know what it feels like when services don’t always join up, when children sit on waiting lists that seem to go nowhere, or when support suddenly stops the moment, a young person turns 18.
NHS England is currently developing the Modern Service Framework (MSF): a blueprint for how health services for children and young people aged 0 to 25 should be designed, delivered and measured.
Think of it as a ten-year plan setting out what good children’s healthcare looks like, and how the NHS will get there. It’s still being shaped which means right now is exactly the right moment for voices like ours, and yours, to be heard.
The picture right now
The Children and Young People’s Health Policy Influencing Group (HPIG) recently published a report setting out the challenges children are currently facing across health services in England.
Together with over 70 organisations, charities, royal colleges, professional bodies and expert organisations including Family Fund, the HPIG report has outlined ten tests that NHS England must meet when building the MSF, to ensure every child’s needs are properly considered.
Did you Know?
- Community waiting lists for children have risen 58% since October 2022, compared to 23% for adults
- 1 in 4 children in England are missing their routine 2-2.5-year development check
- Families raising children with complex needs are already navigating a system under severe strain
Three tests that matter most to you
The ten tests cover a wide range of children’s health needs. Here are three that are particularly relevant to the families we support.
Test 3: All children must be included, especially those with the highest needs
A single, population-wide target risks making the most vulnerable children invisible. The MSF must set different outcome expectations for different groups, ensuring that children living with serious illness, life-limiting conditions or complex disabilities aren’t lost in the data.
For these children, many of whom are supported by Family Fund, faster diagnosis, timely access to specialist services, and proper coordination are essential.
Test 5: Services must work together around the child and family
Too many families are left to navigate health, education and social care on their own with each system having its own referral pathways, waiting times and eligibility criteria. Children with complex or co-occurring needs are often passed between services that each only address one piece of the puzzle.
The MSF must set a clear expectation that care is designed around the whole child and not a single diagnosis. Crucially, it must also recognise the enormous role played by parent carers, siblings and young carers and ensure services support the whole family.
Test 10: Every transition must be properly supported
What happens when a child turns 18 is one of the concerns we hear most often from families. In too many parts of the country, paediatric services stop but adult services aren’t yet ready to accept referrals, leaving teenagers in a gap where neither system takes responsibility.
They happen between hospital and community care, between specialist services, and at every major life stage. The MSF must treat each of these moments as both a point of risk and an opportunity to build young people’s confidence and independence.
Your voice matters right now
While the MSF is still being developed, there is a real opportunity for the experiences of families to shape what it becomes. Family Fund welcomes the development of the framework, and we will be watching closely to see whether it delivers for the families we support as we keep you updated as things progress.
Read HPIG’s full report: Ten Tests for NHS England’s Children and Young People’s Modern Service Framework