Parents of child with autism win court battle
Parents have won a court battle after their autistic son was denied access to a “life-changing” by the NHS.
The boy, known as ‘A’, has severe autism and phenylketonuria (PKU), a rare disease which inhibits the metabolism of phenylalanine.
If left untreated, phenylalanine – which is found in protein-rich food – can accumulate in the blood and cause serious cognitive impairment or permanent brain injury.
People suffering from PKU often have to remove protein-rich food from their diet and take supplements instead.
However, because of A’s severe autism, his parents have difficulty persuading A to take the supplements.
On delivering the verdict, the Judge 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 added: “However much one might hope that on the next occasion the panel will decide that the net additional expenditure of treating S with Kuvan would be justified, having regard to the likely clinical benefit of keeping his blood phenylalanine levels consistently within the range that would avoid his suffering any additional neurological impairment, thereby potentially enabling him to realise his maximum functioning potential, they could still lawfully decide to refuse funding.”