NHS England will be ordered by the High Court to provide funding to treat a teenager with a severe neurological condition after a judge criticised its “thoroughly bad decision” and “absurd” policy.
Mr Justice Collins said he would issue a mandatory order against NHS England within weeks, after deciding it had acted unlawfully in its decision to deny funding for the drug sodium oxybate to treat a 17-year-old’s severe narcolepsy.
NHS England was accused of misapplying its policy and discriminating against the girl because hundreds of other NHS patients already receive the drug. The government is also funding private prescriptions of the drug to people whose narcolepsy was caused by the swine flu vaccine Pandemrix in 2009-10.
The judge said it was a “bad decision” by NHS England to refuse funding for the drug, and it ignored the exceptional situation the teenager was in. He said the only proper course of action based on the facts was to order that the drug be provided.
Throughout the hearing he criticised NHS England’s justification for refusing the drug and said it was “arguable” that the decision was “totally irrational”, adding: “One wonders whether the policy is itself irrational in this respect.
“Any lay person looking at the facts of this case would not take the view that this was a reasonable decision to have made because it destroys this girl’s life.”
The national commissioning body faced sharp criticism from the judge throughout Thursday’s hearing and was given several opportunities by the judge to reconsider its stance. He urged “someone very senior at NHS England” to think again. He described NHS England’s position as “nonsense” in relation to its stance on the girl’s condition and whether it should be deemed exceptional.
NHS England will now be required to fund a three month trial of the drug for £2,000. A written judgment is expected in coming weeks.
The court was told the teenager, who cannot be named, was deteriorating despite her existing treatment and her doctors believed sodium oxybate was the most effective treatment available. Her narcolepsy is causing her chronic sleep deprivation, fatigue, hypnogogic hallucinations and uncontrolled collapsing.
The court heard she was due to take her AS Levels in coming weeks and wanted to be a neurosurgeon.
The legal argument focused on NHS England’s use of its policy on individual funding requests and whether the girl was an exceptional case within the cohort of children with narcolepsy because she was getting worse.
NHS England accepted the drug was likely to be effective in treating her and that cost was not a factor.
The judge said ignoring the girl’s condition was a “perversion” of what the NHS Act said the health service should provide to patients, adding that a clear case of exceptionality appeared to have been “totally ignored”.
He said refusing the drug would have a “disastrous effect on this girl’s future life.”
Ian Wise QC, acting for the family, said: “We saw that initially the application was refused on a costs basis, it was then refused on the basis that to allow funding would be a service development and it is now refused on the basis she is not exceptional so there have been three separate rationale for refusing this treatment.”
He said the decision of the individual funding requests panel to refuse the application from a specialist consultant was “perverse” given that the only two clinicians on the panel were not specialists dealing with narcolepsy.
Jenni Richards QC, acting for NHS England, said: “[The case was] not a challenge to the overall policy position of NHS England that this drug is not routinely commissioned. In the thousands of competing interests that the NHS faces it is not said that it is unlawful for NHS England to have a policy where it does not fund sodium oxybate for children.
“Huge amounts of increasingly effective treatments come available month after month and they cannot all be funded by the NHS and statute does not require them all to be funded by the NHS.”