Breath-taking budget driven inhumanity: NHS Continuing Healthcare decision making & profoundly disabled children
The treatment of families with profoundly disabled children by increasing numbers of NHS Integrated Care Boards (ICBs) in England and NHS Health Boards in Wales is truly shocking. Children on ventilators, children with tracheostomies, children with complex gastronomy tubes, children with extreme mental impairment related behaviours that pose an immediate danger to themselves, their siblings and other family members; children with rare and highly complex, life limiting neurodegenerative conditions – and much more besides. These are children who are – or clearly ought to be – eligible for NHS Children and Young People’s Continuing Care funding.
It is a complex Cinderella area of the law: a legal backwater that allows NHS bodies to behave with a level of breath-taking budget driven inhumanity. NHS bodies that argue that their 24 x 7 nursing care should be funded by local authorities or by families. NHS bodies that routinely ignore[1] agreements with families and even court orders and – and who, together with local authority children’s services – ‘operate in silos having only regard to their own duties, without any common sense approach to the life of a child, who requires them to work together to protect her’.[2]
To the enormous credit of ‘Contact’, the charity for families with disabled children, and the broadcaster Sky – detailed research has now been published exposing the shocking behaviour of some health bodies in ruthlessly cutting the care and support of profoundly ill children: often children with expected short lives.
- The Contact briefing ‘Thousands of children with life-threatening conditions not getting vital NHS support’ can be accessed by clicking here.
- The Sky News story ‘This mum faces a nightly battle to keep her daughter alive – but the NHS won’t help her’ can be accessed by clicking here.
- The Contact research report ‘How Continuing Care for Children fails those with the most complex health needs (England)’ can be accessed by clicking here.
- To access (and then sign) Contact’s Petition demanding urgent reform of children’s continuing care in England click here.
Background materials
Previous posting on this website on this issue, include:
- Means testing children’s healthcare by stealth
- NHS Continuing healthcare and young-people: R(JP) v NHS-Croydon
- Medically complex children, Children’s Continuing Care, and Children’s Social Care: dispatches from no-man’s land
For the Law Commission’s (2025) recommendations for the reform of NHS Children’s Continuing Care in England (at chapter 14) click here.
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[1] Cwm Taf Morgannwg Health Board v. AB [2025] EWCOP 24 (T3) para 35.
[2] Ibid.
Posted 11 December 2025.