Judicial review update: NHS England ordered to fund treatment
In the recent case of S (a child) (by her father and litigation friend M) v NHS England  EWHC 1395, the High Court overturned NHS England’s decision to reject an Individual Funding Request (IFR) for narcolepsy and cataplexy treatment. In an unusual step, the defendant commissioner was ordered to fund a three month trial period of the drug.
S was a 17 year old girl suffering from narcolepsy and cataplexy resistant to the usual drug therapy for these conditions. Her presentation was so severe that it was affecting her mental and physical health. She sought treatment with the drug sodium oxybate, which, it was argued, could provide a chance of her living a normal life. Sodium oxybate is not recommended by NICE for children nor, at the time of the hearing, was there a commissioning policy for NHS England to fund it. There is currently consideration being given as to whether there should be a general commissioning policy for sodium oxybate where children are not responsive to the usual treatment.
The initial IFR was sent to S’s local CCG that refused funding on the ground of cost effectiveness. In any event, the CCG did not have jurisdiction to consider the case because NHS England is responsible for commissioning sodium oxybate for children. Therefore, the IFR was subsequently considered by the appropriate commissioning body, NHS England.
S’s consultant submitted that S’s clinical presentation met the exceptionality test as set out in the Defendant’s policy and that therefore sodium oxybate treatment should be funded. S’s condition was rare in itself but her deteriorating physical and mental health was deemed very unusual in narcolepsy patients. The IFR was rejected on the grounds of lack of exceptionality, and further IFRs and more supporting evidence were submitted to no avail. NHS England maintained its refusal, although there was not always a clear rationale as to why.
S argued that there had been a failure by NHS England to apply its IFR policy correctly.
Mr Justice Collins acknowledged that NHS England has finite resources and has to make utilitarian decisions, which must be very difficult for decision-makers. However, he felt that S’s case fell squarely within the definition of “exceptional” for the purposes of the IFR policy and that the decision to refuse the treatment could not be supportable. He made an interim order for NHS England to fund the provision of sodium oxybate to S for a trial period of three months.
This case is interesting to those making commissioning decisions for a number of reasons. Primarily because Collins J essentially took the decision out of the hands of NHS England, at least in the short term, by ordering the body to fund three months of treatment. Usually the Admin Court does not substitute its own decision for that of the public body and instead quashes the original decision, returning the IFR for reconsideration. The rationale for this is that judicial review is intended to identify where a public body has erred in law, not to allocate public resources. As such, the decision by Collins J to order funding of the drug for three months was a bold one and was despite him being at pains to point out that he must not substitute his own judgment for that of the IFR panel. The judge went on to say that he hoped that there would be no further cases of this kind once the decision had been made as to whether sodium oxybate should be made available to children.
This judgment also highlights the perennial problem faced by commissioners in identifying when an IFR meets the exceptionality test, particularly in view of the complexity of some IFR policies (the explanation of exceptionality in NHS England’s policy ran to four pages).
This case makes clear that when determining whether or not to allow an IFR, commissioners should be clear and consistent in their reasoning and be aware that, if the judge deems a refusal not to be “supportable” on the facts of that specific case, a power may be used to compel funding.
We understand NHS England is appealing this decision and we will provide further updates if and when the matter comes before the Courts again.