NHS public consultation - Please respond before 20th April

node leader
25 March 2016

NHS England Specialised Services Clinical Commissioning Policy
Sodium oxybate for symptom control of narcolepsy with cataplexy (children)

NHS England have (21 March 2016) launched a 30 day public consultation on a proposed number of new products for specialised services, (including a clinical commissioning policy for Sodium Oxybate for symptom control of narcolepsy with cataplexy (children). 

This is extremely important and there is only one month to respond to this policy. As a reminder, despite Sodium-Oxybate being licensed for 10 years in the UK, we still have no NICE Guidelines, no Clinical Pathway, No Clinical Commissioning Policy for adults or children with Narcolepsy. 

As it stands, this proposed policy would expire when children reach 18 years of age, leaving them potentially untreated in the adult health system.

Action Requested - By 20th April 2016

You can also share this post on social media and ask your GP, Employer, Carer, Trade Union, School, College or University to also respond.

To help with some of your thoughts, please see the attached pdf response submitted by Narcolepsy UK (click to view).