Updates from Narcolepsy UK

I hope you all find this update useful, apologies for the length but we have been busy beavering away on so many issues and as everything is connected, it can sometimes take a while before we are able to paint an accurate picture of activity for you.

It seems that the DWP have sought an extension of time until 10th March for seeking permission to appeal from the Court of Appeal’s decision to the UK Supreme Court. We understand that legal representation for the claimant will continue to oppose the grant of permission to appeal.

Meanwhile, our visit to the European Parliament in December 2016 may be starting to bear fruit, perhaps the Secretary of State should listen to the European Commissioner’s views on the Pandemrix issue.


Interesting also that the Department of Health's ex gratia scheme to fund the provision of Xyrem to personal injury claimants who claim that they developed narcolepsy with cataplexy following immunisation by the NHS with Pandemrix vaccine is being funded for at least an additional year.
The ex gratia scheme was originally funded for 2 years, to the end of March 2017. The Department of Health are communicating this to sleep medicine consultants who have made applications to the scheme, and to the British Sleep Society.
Attached below is an updated copy of the scheme summary, for your information. This reflects the revised timeframe for the scheme.

We will again be present when the NHS England application for permission to appeal the order of Mr Justice Collins is heard on 2nd March in the court of appeal. 

Why NHS England are still progressing this appeal when they have already published a policy confirming they will make sodium-oxybate routinely available for children is beyond belief and we will be contacting them to understand why this is seen as a good use of their resources in the current environment.

Blog link - Sodium Oxybate to become "routinely" available for narcolepsy with cataplexy (children) in England

We will continue to request access to the approved medications we require as people with narcolepsy, regardless of the trigger and as we celebrate each small success and then seem to face inevitable appeals or lack of progress we hope you will continue to support our efforts on behalf of all of us across the U.K.