Do you have an experience to share about Continuing Care?
2 mins read
Tuesday 23 September 2025
Too many disabled children with complex health needs and their families miss out on vital NHS-funded support due to a postcode lottery of care. This support, known as continuing care, provides tailored care packages for children with complex, often life-limiting, health needs that cannot be supported through normal health services in England.
Children who need continuing care funding require round-the-clock care and support to breathe, eat, move, and manage their pain. Yet this group of children have weaker legal protections than adults who need health-funded support.
As a result, some families are left to provide nursing and complex care for their child, alone.
We are keen to speak to families who have experience of children’s continuing care about the following issues:
- Your child’s continuing care package has been reduced or removed by your local Integrated Health Board (ICB).
- You’ve applied for continuing care support for your child, but been turned down.
- Your child has an agreed continuing care package but there are no nursing carers to deliver the care.
- You live in fear that your child’s continuing care package it will be taken away due to yearly or frequent reviews.
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