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Judge overturns England’s refusal to provide treatment to 17 year old woman with narcolepsy

In a judgment delivered today at the Royal Courts of Justice, Mr Justice Collins has overturned NHS England’s decision to refuse funding for a drug, Sodium Oxybate (brand name Xyrem), used to treat narcolepsy.

The Claimant, S, is a 17 year old woman with narcolepsy and cataplexy, a serious condition causing disruption to night-time sleep, excessive daytime sleepiness, hallucinations and cataplexy.

The judge recognised the clear evidence that the young woman was suffering from a particularly rare form of her condition. He was satisfied that the claimant’s position was ‘exceptional’ and at the conclusion of the hearing made an interim order that NHS England should fund the provision of the much needed drug for a three month trial.

The judge went on to recognise that anyone reading the circumstances of this case would be ‘surprised that sodium oxybate is not available for children generally’.

In conclusion, the judge added his ‘hope’ that ‘this particular problem and a case such as this will go away when the decision is reached whether sodium oxybate will be recommended and in principle available for children’

Commenting on the outcome, the Claimant’s father said “The impact of narcolepsy and cataplexy on my daughter has been devastating. She is at a critical time in her life trying to undertake important exams which will help shape her future. I am delighted to say that as a result of the Judge’s interim order that the drug be funded forthwith her condition has improved significantly.”

Peter Todd, the claimant’s solicitor is delighted with the outcome. Looking ahead, he urged NHS England to “take on board the judgment as it currently considers its policy regarding the use of Sodium Oxybate in children.”

ENDS

Press enquiries to:

  • The claimant’s father can be contacted for comment on 07880 706711. (The High Court has granted the claimant and her family anonymity. Any comments given would be on condition the anonymity order is complied with)
  • Peter Todd, Solicitor and Partner, Hodge Jones & Allen LLP (Direct dial: 020 7874 8467 Mobile: 0782 4437466 Email: ptodd@hja.net )
  • Denise Kitchener, Director of PR, Hodge Jones & Allen LLP (Direct dial: 020 7874 8345 Mobile: 07789 117297 Email: dkitchener@hja.net )

Notes to editors:

  1. The full judgment in the case of The Queen (on the application of S (a child) By her father and litigation friend M v NHS England is available here.
  2. The Claimant’s Counsel were Ian Wise QC and Stephen Broach of Monckton Chambers.
  3. The application for judicial review was funded by the Legal Aid Agency.
  4. Narcolepsy is a rare and incurable autoimmune sleep disorder caused by the disruption of the part of the brain that produces hypocretin, a peptide that regulates sleep. It is estimated that around 31,000 people (one in 2,000) have been diagnosed with narcolepsy.
  5. Narcolepsy UK is a registered charity which exists for the benefit, relief and aid of persons suffering from narcolepsy. They campaign for access to medication for people with narcolepsy. Chair Matt O’Neill is available for comment 07825 354355
  6. Hodge Jones & Allen LLP was founded in 1977 and has over 220 staff based in its Euston, NW1. The firm’s team of specialists deal with Personal Injury, Medical Negligence, Industrial Disease, Civil Liberties, Criminal Defence, Court of Protection, Dispute Resolution, Employment, Family Law, Military Claims, Serious Fraud, Social Housing, Wills & Probate and Property Disputes.

• Recognised as a Tier 1 firm across a number of disciplines by Chambers UK
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