• NHS England faces judicial review over decision not to fund drug for 7-year-old boy
  • Lawyers will argue NHSE should have considered the boy’s welfare under the Children Act
  • Victory could create a new duty on NHS England when making commissioning decisions affecting children

Lawyers have been granted permission to challenge NHS England over its decision to refuse a drug for a seven-year-old boy in a case which could have far reaching consequences.

Last week the High Court granted permission for a judicial review to go ahead against NHS England including allowing lawyers to argue that NHS England has not considered the welfare of the child under the Children Act and human rights legislation.

If the case succeeds on those grounds it could open the door for widespread changes to the way NHS England commissions drugs and services for children. It could effectively create a new duty on the national body to consider the welfare of the child as a paramount consideration.

Last week’s High Court ruling was the second defeat for NHS England in the case after it lost a previous judicial review application in November. At that stage it had argued the boy, who has a condition known as phenylketonuria, was not exceptional and therefore did not qualify for the drug, which is not routinely available on the NHS.

Judges rejected that and after the ruling NHS England changed its stance, accepting the boy was in fact exceptional but that the drug being requested by his doctors, called Kuvan, had not been proven clinically or cost effective. This was a defence it had not previously relied on.

Lawyers for the family returned to court last week to seek permission for a new judicial review against NHS England’s revised grounds. Deputy high court judge Mr Andrew Grubb granted the request and ruled the case should be fast tracked meaning it will be heard in July.

The boy, known as A, has a genetic condition called phenylketonuria which means he cannot metabolise phenylalanine, a substance contained in protein-rich foods. Untreated, phenylalanine will accumulate in his blood in dangerous concentrations and can cause serious cognitive impairment and brain injury.

A consultant from Birmingham Children’s Hospital has advised he should be prescribed Kuvan which would reduce the danger to him and allow him to lead a more normal life. The consultant believes the clinical effectiveness of the drug is well established but NHS England is maintaining that it is not cost effective.

A’s father said: “No family should have to fight with the NHS for over 18 months to ensure that their child is given proper treatment. We, as a family, have found the whole process extremely frustrating, unfair and inhumane. Our treatment has been exacerbated by NHS England’s approach. For 18 months’ they have refused treatment based on this not being an exceptional case yet have now admitted it is an exceptional case but, have introduced a raft of new reasons to justify their refusal. It is clear to me they do not want to fund this life-changing drug and are prepared to put my family through a court case.”

The family’s lawyer Peter Todd, of Hodge Jones & Allen, told HSJ: “The parents of this 7-year-old boy are delighted the court gave permission for there to be a judicial review of NHS England’s refusal to fund Kuvan for him.

“They are grateful for the support of their treating NHS clinicians who have recommended this treatment for him and helped challenge the refusal. They feel NHS England have not considered their child’s best interests to be the paramount consideration. They hope the High Court will make a mandatory order for funding after the forthcoming hearing.”

A spokesman for NHS England said: “In making this sort of complex decision, NHS England must consistently apply its policies and consider the evidence presented before it, as to whether or not the requested treatment will be clinically beneficial and cost effective.

“In this case there were a number of different stages at which the requested treatment was considered. The panel determined there was not sufficient evidence to make funding for the treatment available. It’s this decision which is being challenged in the legal proceedings and which will be considered by the court in due course. It would not be appropriate for NHS England to discuss this case any further at this stage.”