Blog

I left home for Oslo yesterday morning, having had an invite to attend and speak at Frambu (www.frambu.no), from old friends at NevSom - Norwegian Centre for Expertise for Neurodevelopment Disorders and Hypersomnias, Oslo University Hospital, a part of the Norwegian Advisory Unit on Rare Disorders.

Are you interested in working with Narcolepsy UK?

Benefits & Helpline Advisor required

Supplementing the work of Rebecca, who has recently reduced her hours following a change to her career path. We wish Rebecca well and are pleased she will still be working with us.

We seek a conscientious and dedicated person to work with our clients for 12 hours a week. Some day and some evening hours preferred, although we can be flexible with this we do need to have set hours when clients are able to contact you.

This weekend, as part of the preparation work for the Narcolepsy Charter project introduced at the last Narcolepsy UK conference, we will be distributing a short-form pilot version of a survey at the arranged meet-ups to help us understand all the needs and factors affecting the lives of people with narcolepsy in the UK. Once we have processed the feedback we will then progress to an expanded online survey and hope to have as many people as possible engage with it.

Featured on Buzzfeed today is a well researched article on the "Pandemrix" swine flu vaccinations of 2009 and the (now) established link to developing narcolepsy. The article focusses on the experiences of NHS staff, who claim they were required or pressured into having the vaccination without being informed of the somewhat unusual circumstances regarding it's rushed roll out and relatively low level of testing. Some of these same staff who were adversely affected by developing narcolepsy symptoms have now been left to cope with what can be devastating life changes without support.