CDE, R (on the application of) v NHS North East London Integrated Care Board & Anor

Facts

CDE is a 15-year-old boy who is non-verbal, severely sight-impaired, life-limited and medically fragile. He has Lowe syndrome and requires complex medical care. He brings this claim by his litigation friend and mother, EDC. For approximately nine years until 17 December 2025, CDE had access to specialist hospice short breaks through Richard House, which formed part of his crisis safety net, but Richard House closed in December 2025. By a joint response dated 3 February 2026, the First Defendant, the integrated care board responsible for his health care, and the Second Defendant, the local authority responsible for short breaks and respite care, set out the provision they intended to make for him going forward. CDE issued judicial review proceedings on 2 May 2026, contending that the Defendants had failed to secure a written, child-specific and operationally deliverable pathway, on grounds of illegality, irrationality and procedural unfairness including a failure to give reasons and identify ownership. He was in hospital from 11 April 2026 until 7 July 2026 and, after ten days at home, was re-admitted because of severe pain and deterioration, remaining an in-patient with palliative care input at the date of the hearing. Permission was refused on the papers by DHCJ Vikram Sachdeva KC on 15 June 2026, and CDE renewed his application to an oral hearing.