• NHS England has agreed to commission sodium oxybate routinely for children with narcolepsy
  • NHS England will continue with Court of Appeal bid over judicial review decision to prescribe the same drug to a child
  • High Court said the national body’s decision was “thoroughly bad” and ordered to commission 17 year old’s treatment

NHS England will press ahead with a Court of Appeal case against a judge’s ruling that it should commission a drug for a teenager with narcolepsy that it has since decided to routinely provide.

Earlier this month NHS England confirmed it would routinely commission 10 new specialised treatments – including sodium oxybate to treat children with narcolepsy.

Bottles of pills and medicine

Bottles of pills and medicine

NHS England will routinely commission 10 new specialised treatments

The parents of a 17 year old girl with a severe form of the disease had to pursue a High Court judicial review earlier this year to force the national commissioning body to make the drug available to their daughter.

NHS England refused to consider prescribing the drug despite the fact that between 180 and 200 adults and children receive it as a result of decisions by clinical commissioning groups and primary care trusts.

In 2015, HSJ revealed the Department of Health was using taxpayers’ money to fund private prescriptions for sodium oxybate for narcolepsy sufferers whose condition was caused by the swine flu vaccine Pandemrix.

In May, Mr Justice Collins criticised NHS England and called the organisation’s policy as “absurd”. He said it was a “thoroughly bad decision” to refuse funding for the drug, which ignored the exceptional situation the teenager was in as her condition was deteriorating. He said the only proper course of action based on the facts was to order that the drug be provided.

NHS England has launched an appeal against the decision but confirmed it will not seek to prevent the girl from receiving the drug.

An NHS England spokeswoman said: “NHS England has sought leave to appeal this decision and we’re waiting to hear if this is granted – we can’t comment further until the decision of the court has been received.”

The family have criticised NHS England for pursuing the appeal, accusing it of “an abuse of public money”.

Other specialised treatments NHS England has agreed to fund include everolimus for people with tuberous sclerosis complex.

Experts warned last year that the failure to prescribe everolimus risked preventable deaths.

Following the announcement, Chris Kingswood, trustee of Tuberous Sclerosis Association and an NHS consultant, said: “It is excellent news that NHS England have recognised that this extremely effective and affordable treatment should be funded for the 20 young people who would otherwise die. The hall mark of a civilised society is how it looks after its most vulnerable members.”