BSS National Narcolepsy Update

 4th December 2020.


What's your advice on giving the diagnosis to a child/young person in a positive way?

Perhaps focusing on life altering but they can still fulfill their potential, carry on activities etc. We encourage young people to meet others with the same condition to understand better how it affects them & share strategies for coping. In any other year than 2020, we have an annual conference & also local meeting groups.

Main problem is getting drugs like xyrem and wakix on the local formulary. How do you go about this practically?

Yes, this is difficult. However, the best is to link with a pharmacist from the local NHS Trust who can deal with this on behalf of the patient and allow access at the local pharmacy.

The controlled nature of the available therapies often makes primary care reluctant to "get involved" in management.

Yes, thank you, Ste. That’s a good point and important to overcome this with the help of pharmacists.

Did you ask about other forms of transport eg cycling or  was it just driving?

We did yes. Responses around ability to travel, sleeping when travelling etc. Cycling is very tricky for some. I “relearnt” so that I could put my cataplexy in a mental box as I was terrified of coming off due to cataplexy & being caught up in the bike.

From a pt perspective do you have any insight into the process and validity of ability to drive tests?

I question the relevance of them Lynne. I put more emphasis on patients ceasing to drive & voluntarily surrendering their licence which allows speedier resolution via DVLA & clinicians when re-applying. See Section 88 Road Traffic Act. We have some driving resources on

It's the same with schools, it's very difficult to get across the impact of this condition on the children and young pepole, and how improtant it is to get the right supports in place in school.

Absolutely Blair, this is vital as the educational impacts are significant

Is there a case for doing actigraphy first in suspected NT2, prior to moving to MSLT?  Helping to identify restricted sleep.  (Especially with long waiting times now with Covid)

Yes I think Guy highlighted this in the talk and I would agree actigraphy can be very enlightening

Any tips for making a correct diagnosis in children and young adults becuase adult MSLT values are difficult to  apply to Paediatric population, we do use hypocretin in most of the cases

I do hypocretin in children for ease and am a fan

Great review and let me underscore the point that the MSLT must be performed well to be interpretable

Hi Adrian, wonderful to have you with us and yes this is so important! Highly skilled physiology staff are key to effective diagnostics...

Margaret, why is your service so unique when it seems to meet a lot of the holistic needs discussed in other talks?  Are there plans to roll out your expertise nationwide (or should there be)

Nationwide - there are 4 nations & no corporate glue to ensure these things happen. Big one on my list Matt but it needs £ funding - so yes, there should be. Mostly limited to paediatrics in my experience.

Just for interest and no other reason, can’t resist the historical- David Parkes at King’s had many of the then diagnosed UK narcopletics under his care [~200 I think, that gravitated to (me!) at GSTT on his retirement] and in his book on Sleep (in)famously felt that sleep studies were not needed and that all diagnoses could be clinical. An extreme position but attention to the detail of the history is undoubtedly still very important as speakers have said

Thank you, Adrian. Great to have this input from your first hand experience.

Do you think there was a similar immunological response which may explain Encephalitis lethargica following the 1918 Spanish Flu pandemic?

Without a doubt! These patients developed post-infectious hypothalmic lesions and informed our understanding of sleep neuronal circuitry based in Von Economos work.


This meeting has been initiated and funded by Jazz Pharmaceuticals, and co-organised with the BSS

The agenda and speakers have been proposed by the narcolepsy clinical and academic community.