On Friday 13 November 2015, Narcolepsy UK was at the High Court to support an application for a judicial review of NHS England’s refusal to fund sodium oxybate (brand name Xyrem®) for a child with narcolepsy in England, where this medication was recommended by the treating Consultant.
With the benefit of legal aid, and an exceptionally dedicated legal team (Ian Wise QC, Monckton Chambers, Peter Todd and Freya Colvin, Hodge Jones & Allen Solicitors LLP) permission for a judicial review of NHS England’s refusal to fund sodium oxybate has been given.
After two hours of the Judge telling NHS England that the current position was a nonsense, their policy bad and the situation utterly appalling and potentially discriminatory, they agreed to consent to an order for permission for judicial review, after a break and a period for reflection. This is exactly what was applied for and we are extremely pleased to say has been achieved.
Additionally, NHS England’s counsel agreed to review their refusal of funding for sodium oxybate within 14 days; the substantive hearing to be expedited and heard next month (December).
Justice was definitely the order of the day and it was a privilege for Narcolepsy UK to be able to play a pivotal role in the case on Friday and over the next few weeks.
This is a huge landmark case for the charity in our mission and absolute commitment to people with narcolepsy in the UK and even further through our partnerships with patient organisations globally. We would like to thank everyone out there who has registered with us, volunteered, raised funds or supported us via social media.
The judge concluded by stating that he hoped they would make the 'right' decision so we would not have to be back.
This decision has potential implications for anyone in England who has not been afforded the opportunity to see if sodium oxybate could improve their symptoms. As we have always stated, Narcolepsy UK believes that all potential patients should have the opportunity to benefit by accessing this medication if prescribed by their clinician.
Thank you everyone for your support, we appreciate it hugely!