• NHS England faces threat of judicial review over refusal to fund treatment for teenager
  • DH and NHS England are funding Xyrem for hundreds of other narcolepsy patients
  • Lawyers argue the decision is unlawful and discriminatory

NHS England has asked doctors to resubmit a bid for funding to treat a 16-year-old girl with a drug already available to hundreds of NHS patients to stave off a judicial review over its decision.

A High Court imposed deadline for NHS England to reconsider its position passed on Friday. The national commissioning body has confirmed that it has asked doctors treating the girl, who has severe narcolepsy, to resubmit their application.

Royal Courts of Justice

Royal Courts of Justice

Source: Freefoto

The judge said it was ‘arguable’ the commissioning policy was wrong and unlawful

Last month lawyers acting for the teenager won permission for a judicial review after it emerged the drug clinicians wanted to use, Xyrem (sodium oxybate), was already being funded for hundreds of patients using public money.

HSJ revealed in July that the Department of Health had launched an “ex gratia” scheme to fund Xyrem for patients with narcolepsy as a side-effect of the swine flu vaccine Pandemrix, which was rushed into use amid fears of a pandemic in 2009.

During this court case NHS England said 194 adult patients were receiving NHS funding for Xyrem despite the individual funding request to treat the teenager being turned down in May.

The application was refused on the grounds that because she was not an exceptional case. The request did not meet the criteria for individual funding requests, which are limited to only a handful of applications a year.

Mr Justice Collins said it was “arguable” that NHS England’s commissioning policy was wrong and unlawful, and that it was potentially discriminatory that the teenager was being denied the drug while other patients were not.

Her lawyers said she was suffering severe disruption to sleep, fatigue, hallucinations and cataplexy, which can cause people to collapse without warning.

Sodium oxybate is not routinely commissioned by the NHS and has not been approved by the National Institute for Health and Care Excellence.

NHS England said the drug was being considered for a commissioning policy.

An NHS England spokesman said: “These are incredibly difficult decisions, and we have every sympathy with all patients with rare conditions for which no reliable treatment exists. After reconsidering the original [funding request] we have asked the patient’s clinician to submit a fresh application supported by detailed evidence, and invited their representatives to agree to a stay [of legal proceedings] while this is being explored.”

A spokesman for the patient’s legal team said they were considering NHS England’s response and no decision had yet been made.