Parents and carers say they are fighting “unlawful” cuts to NHS continuing healthcare budgets that will leave children with disabilities “at risk”.
The families say the cuts will lead to “harrowing and costly hospital readmissions”.
They have come together to form the Continuing Care Parents Group, based in South West London,
Through their lawyers, Rook Irwin Sweeney (RIS), they are threatening legal action against the South West London Integrated Care Board (ICB).
They have set up a CrowdJustice page to help fund their challenge to the ICB.
The South West London Continuing Care Parents Group has raised just over £9,000 towards its battle with the ICB
Process is ‘rigid and unlawful’
RIS have written to the ICB. The lawyers challenged the Board’s use of a standardised tool to cut vital care packages for disabled children.
The law firm argues the ICB is applying the process rigidly and unlawfully.
The parents’ group demands a reversal of the cuts. It also insists that each child affected over the past 18 months be individually assessed.
Issues are ‘systemic’
The families say that since news of their action spread, it has become clear that the issues raised are not isolated, but “systemic”.
Their children have complex learning and health needs and depend on continuing healthcare funding to “live safely and thrive”, the families claim on their crowdfunding page.
The families insist that an alarming number of children have had their support cut without any change in need.
They accuse NHS administrators of hiding behind red tape and using “legal threats to bully parents into accepting less than their children desperately need”.
Nearly at the target
By today (24 April), they had raised more than £9,000 towards a target of £10,000.
In a statement, a spokesperson for the ICB said it took its duties to provide continuing healthcare for children “very seriously”.
The statement added that it follows “national guidance for assessment and funding”.
Related:
- Continuing healthcare fails families
- Adults fear death in poor healthcare
- New home joy after ‘horrific’ care
Published: 24 April 2025
