Contact’s campaign to improve Continuing Care support for medically complex children: the latest
3 mins read
Tuesday 19 May 2026
Last year Contact launched its Children’s Continuing Care campaign to improve this vital NHS funded support in the home for children with life threatening conditions.
It followed publication of data we gathered through Freedom of Information requests (FOIs) to all 42 Integrated Care Boards in England about the number of medically complex children receiving continuing care support. This revealed that over half who have been referred for Continuing Care have been rejected and those that do get it worry it will be reduced or removed.
Children have less legal protections
Amanda Elliot, Health policy lead at Contact, said: “The number of children living with life threatening conditions has risen dramatically but support for them when they get home from hospital is patchy. Those who do get it live in fear it will be taken away and those who don’t are doing the most complex nursing procedures at home alone. Children have less legal protections than adults, which is why Contact is calling for a strengthening of children’s Continuing Care to bring it in line with the adult system. Our work over the last nine months is establishing a strong evidence base and growing recognition among decision-makers that change is needed.”
Contact’s Children’s Continuing Care campaign activity includes:
- Secured national media coverage and a response from Number 10. Sky News and Politics Home
- Secured a meeting with the Minister – watch this space.
- Facilitated direct engagement between parent carers and DHSC/NHS England officials and local authorities.
- Submitted FOIs to NHS England about data they have collated about number of CCC packages in each ICB area to get the latest information.
- Influenced discussions within DfE on SEND reform on children with complex needs and provided evidence to parliamentary committees.
- Our research was referenced in a Children’s Commissioner report on children stuck in hospital.
- Begun development of practical resources to support families challenge poor and often unlawful practice.
- Providing support to families formally challenging failures in the Continuing Care system.
- Co-presented our FOI findings with local authority children’s social care leads pressing for improvements in children’s continuing care.
Support the campaign
Our campaign needs your support. We are still calling on parents and carers to add their voice to the campaign by signing our petition.
One family said: “Thank you Contact for launching this campaign it means a great deal to families like ours. Not having appropriate support from NHS Continuing Care for medically fragile children with 24-hour, lifelong needs has a serious impact on the entire family and directly affects the child’s standard of care. Parents are often left struggling to cope without adequate professional support, and instead of receiving help, many are blamed for being unable to manage – even when the underlying issue is a lack of funding or trained carers. Families in our group and across the country live in constant fear that vital support packages will be reduced or withdrawn.”