Misconception or Inequality and Discrimination?

17th April 2017

Many of you will know how we have worked tirelessly over the last few years to remove the barriers put in place for those of us who need access to sodium oxybate in order to assist in the management of our narcolepsy and specifically our cataplexy.

Earlier this month, we wrote to NHS England to follow-up on recent successes in the clinical commissioning of sodium oxybate for children and the question our Chair, Matt O’Neill, raised at their AGM in September seeking access to medication and to shift our main interaction from the High Court to a more productive place. 

We have specifically asked for a meeting to discuss the obvious inequality that arises from the current commissioning policies and what steps can now be initiated without the need to divert time, resource and funding to any further legal challenges. 

Recent High Court decisions concerned the level of disability of a child with narcolepsy and another seeking access to sodium oxybate for a child with narcolepsy. Both cases are now resolved and now is the time to discuss the lack of a similar policy for adults with narcolepsy and how we can work to rectify that, quickly.

Concerning disability, the decision of the Upper Tribunal is here.

and the decision of the Court of Appeal is here.

Concerning commissioning sodium oxybate for children, the decision of the High Court is here.

The decision of the Court of Appeal has not been reported.

We also attached a link to our website where we published the outcome and our views on the same, following a Westminster Hall debate on 8th March, 2017 where we also raised the disparity between adult and paediatric treatment and also the role of the Ex Gratia Xyrem Scheme for Pandemrix victims.

We will let you know when we receive a reply.

In the interim, we will continue to fight for the individual’s right to have access to sodium oxybate across the UK. Where possible, we will engage to support clinicians and their patients without escalating to legal action. However, without an end to the current level of misconception, disparity, inequality and discrimination that we are seeing across the UK, we will seek legal aid on behalf of anyone who qualifies and continue to press each and every individual case through the legal system until we rectify this situation.

On Tuesday, April 18th, an Individual Funding Request for sodium oxybate will be held in Devon for an adult with severe narcolepsy. This particular request has been declined previously and we, along with Peter Todd from Hodge Jones & Allen LLP, are supporting both patient and extremely supportive clinician, who strongly disagrees with the refusal of funding, in their request to access this treatment.

If the IFR Panel insist on declining the request on Tuesday, both Matt O’Neill and Peter Todd will do an overnight “dash” to Devon where they will join the patient and clinician on Wednesday morning to present at a “Treatment Decision Review Panel”.

If no agreement is forthcoming, we have recourse to agreed legal aid to pursue a judicial review.