The High Court has overturned NHS England’s decision to refuse funding for a drug used to treat narcolepsy.
Ruling in R (on the application of S (a child) By her father and litigation friend M v NHS England [2016] EWHC 1395 (Admin), Mr Justice Collins held that the claimant suffered from a rare form of her condition and her circumstances were “exceptional”. He made an interim order that NHS England fund the provision of the drug, sodium oxybate (brand name Xyrem), for a trial period of three months.
The claimant is a 17-year-old woman with narcolepsy and cataplexy (temporary involuntary weakening of the muscles in response to strong emotions, such as laughter).
Delivering his judgment, Collins J emphasised that there was “no suggestion that any of those involved in the decisions lacked compassion or knowingly refused treatment they should have permitted. The difficulties facing them cannot be underestimated…Nonetheless, I am satisfied that this is a very rare case in which the decision making has gone wrong”.
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