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High Court considers application for permission for judicial review in test case concerning NHS England’s refusal to fund medication for a child with narcolepsy

On Friday 13th November 2015, a Judge of the High Court will consider an application for permission for the father of a child to seek judicial review of a decision by NHS England to refuse NHS funding for the drug Sodium Oxybate (brand name Xyrem®) used to treat narcolepsy.

The case has potential to become an important precedent for future NHS funding in the treatment of narcolepsy, and may help define the legal rights of children in England to access expensive medical treatments.

The Claimant is a 16 year old female who has narcolepsy and cataplexy, a serious neurological condition causing disruption to night-time sleep, excessive daytime sleepiness, hypnogogic hallucinations and cataplexy. The court has granted the Claimant and her family anonymity (Order dated 1st September 2015).

Since 2012 the Claimant had been prescribed a range of medications to treat her condition including stimulants to help stay awake during the day, other drugs to assist with night-time sleep and further drugs for cataplexy. Unfortunately none of these were effective and in some cases the drugs caused negative side effects.

In May 2014 the Claimant’s NHS Consultant recommended she try Sodium Oxybate, a drug known by the brand-name Xyrem®. Sodium Oxybate, works differently to her existing medications. It induces deep and prolonged night time sleep which consequently addresses the problem of fractured night time sleep and reduces excessive daytime tiredness. It also alleviates cataplexy and reduces or diminishes the hallucinations. The European Federation of Neurological Societies guidelines on the management of narcolepsy confirms that Sodium Oxybate is the most appropriate treatment for narcolepsy with cataplexy in adults and it also achieves life-changing benefits in children. In June 2014 her Consultant applied for funding for NHS approval for funding of Sodium Oxybate as the cost of it to the NHS can be up to £13,000 per annum.

The application was first considered by the local CCG who eventually decided it should be considered by NHS England instead. In May 2015 NHS England refused the funding application on the basis that the Claimant is representative of a group of patients who have a similar condition and who could potentially all request the same treatment. NHS England therefore considered the applicant’s request to be for a service development rather than an individual funding request.

According to the NHS Commissioning Board, a service development is any aspect of healthcare which the NHS has not historically agreed to fund and which will require additional and predictable recurrent funding. However, there is evidence that Sodium Oxybate is already funded by the NHS for hundreds of patients with narcolepsy and cataplexy therefore making NHS England’s decision both irrational and discriminatory.

Peter Todd explains: “I am currently acting for 85 clients with narcolepsy and cataplexy caused by the Pandemrix vaccine in the 2009/2010 swine flu vaccination programme. At least 10% of these clients have previously been prescribed Sodium Oxybate under NHS funding. Given that an estimated 31,000 people suffer from narcolepsy in the UK, it is not unreasonable to estimate that hundreds, if not a thousand, patients have already received NHS funding for Sodium Oxybate.”

Matt O’Neill, chair of Narcolepsy UK, provides further evidence: “I am personally aware of a couple of hundred people, both adults and children, who have received NHS funding for Sodium Oxybate in the last couple of years. NHS funding for Sodium Oxybate is primarily dependant on geography and specific sleep centres; some sleep centres can provide it and some can’t. There are cases where patients who live in one region of England have been refused local NHS funding for Sodium Oxybate but are subsequently referred to a different NHS region where they then receive funding. It is an extremely arbitrary process to obtain the treatment.”
The Claimant claims it is impossible for Sodium Oxybate to be classified as a service development when NHS funding is already provided for the drug on an individual basis. NHS England are strongly contesting the claim.

Peter Todd comments:

“There are essentially 5 key grounds to this legal challenge:-

  • Whether it was irrational to refuse funding on the basis that to do so would be a ‘service development’ for the NHS when many other patients (possibly as many as 1,000) have received NHS funding for Sodium Oxybate, (‘The Service Development Issue’);
  • Whether it was irrational to differentiate between patients with the same clinical condition for whom their treating consultants have prescribed Sodium Oxybate, (‘The Common Law Discrimination Issue’);
  • Whether the difference in treatment between the Claimant (a child for whom funding for Sodium Oxybate is sought by an IFR) and others with the same or similar condition for whom funding was sought from the NHS by other routes is unlawfully discriminatory contrary to the Human Rights Act 1998 and Art 14 ECHR, (‘The Statutory Discrimination Issue’);
  • Whether the decision was taken without consideration being given to the best interests of the Claimant as required by Article 3 of the United Nations Convention on the Rights of the Child read together with Art 8 ECHR, (‘The Best Interests of the Child Issue’); and
  • Whether the decision was taken in the absence of any arrangements having been made to ensure that the Defendant’s functions were discharged having regard to the need to safeguard and promote the welfare of children including the Claimant, contrary to section 11 of the Children Act 2004, (‘The Children Act Issue’).
    It will be interesting to see how the court determines this test case as it has potential implications to determine the legal rights of all children in the UK needing expensive medical treatments and the legal obligations on the NHS”.


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Notes to editors:

  • Narcolepsy is a very rare and incurable autoimmune sleep disorder caused by the destruction of the part of the brain that produces hypocretin, a peptide that regulates sleep. The absence of hypocretin can lead to a range of serious symptoms including excessive daytime sleepiness, fragmented sleep, cataplexy (sudden collapses), frightening hallucinations, “micro-sleeps” during everyday activities, weight gain and sleep paralysis.
  • Ian Wise QC of Monckton Chambers is instructed by Hodge Jones & Allen for the Claimant with funding provided by the Legal Aid Agency.
  • The family are willing to speak to journalists on condition the order of the court as to anonymity is complied with. Contact number 07880 706711
  • NHS England commissions health services in England. National media team 0113 8250958 or 0113 8250959 out of hours 07768 901293
  • Hodge Jones and Allen was founded in 1977 in Camden and has over 220 staff based in Euston NW1. The firm’s team of specialists – Personal Injury, Medical Negligence, Industrial Diseases, Civil Liberties, Criminal Defence, Court of Protection, Dispute Resolution, Employment, Family Law, Military Claims, Serious Fraud and Social Housing.
  • More than 5,000 people have so far signed an online petition started by Narcolepsy UK about the NHS denying medication for people with narcolepsy