The family of a seven-year-old boy whose condition could cause brain damage were challenging an NHS decision not to fund a life-changing drug. The child, “S”, has a rare condition that means he cannot digest protein and he is autistic, which makes controlling his diet difficult for his parents.
The parents of the boy, who has phenylketonuria or PKU, want a drug called Kuvan to help him metabolise protein, which would cost about £100 a day.
The judge found for the parents, quelling the funding decision and sending it for reconsideration.
But Mrs Justice Andrews said: “Whilst this judgment is bound to give rise to a degree of optimism, I must caution against raising hopes too high. The fact that this claim for judicial review has succeeded does not mean that there will necessarily be a favourable outcome to this IFR (individual funding request) application.”
The judge rejected the claimant’s argument that NHS England had breached section 11 of the Children Act 2004 or the Human Rights Act.
Jenni Richards QC was instructed by Blake Morgan for NHS England.
See below for media coverage of the case: