The High Court has allowed a challenge to an individual funding refusal for a drug to treat a 17 year old girl suffering from narcolepsy and cataplexy: S (A Child) v NHS England [2016] EWHC 1395 (Admin).

In what he described as "a very rare case in which the decision making has gone wrong", Mr Justice Collins:

  • Held that there was a failure to apply the IFR policy correctly; and
  • Took the unusual step of making an interim order requiring NHS England to fund provision of the drug for a three month trial period to be administered under the lead consultant at the hospital which the claimant was attending.

The claimant, S, suffered from narcolepsy and cataplexy. The disability is rare, affecting apparently 31,000 persons in the country. Many sufferers can be treated effectively with a number of drugs but there are some, of whom S was one, for whom the usual treatment was not effective. A different drug, sodium oxybate, is however effective - but is not recommended for children so potentially available only through an Individual Funding Request.

An IFR can be met if the patient has exceptional clinical circumstances, which must be something considerably more than a failure of the usual treatment. However, the Court stressed that exceptional "is not the same as unique and...there should not be an approach that denies that any but an extreme case is regarded as exceptional".

In support of her request the claimant submitted evidence from her hospital consultant. The Court held that the defendant had failed to have regard to this evidence, and had applied "an altogether too restrictive application of exceptionality":

"...The claimant is not only not responding to the usual treatment but is deteriorating. This shows that she is suffering from a particularly severe form of her condition. Her condition is rare, and her failure to respond to the usual treatment is also rare. But she is in a very rare situation in that she suffers from a particularly rare form of the condition. This aspect is not dealt with in the response of the defendant's panel or screening group. Since exceptional cannot mean unique, it is in my view difficult if not impossible to see that the claimant should not be considered to meet the exceptionality test. If she is not exceptional, who is?..."

The Court did not consider the additional grounds of challenge of unlawful discrimination and breach of section 11 of the Children Act 2004 coupled with Article 3 of the UN Convention of the Rights of the Child to treat the claimant's best interests as a primary consideration. But Mr Justice Collins expressed his hope that