Blog: In the media

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Narcolepsy UK supporting Irish Pandemrix® victims

26 July 2019
pandemrix, Ireland, swine flu, vaccine, vaccination, GlaxoSmithKline

Following an approach by the Irish litigation law firm, Michael Boylan, acting for c.80 adults & children affected by Narcolepsy arising from the administration of the Swine Flu vaccine Pandemrix® between October 2009 and the end of March 2010, our Chair Matt O’Neill will be supporting them in their pursuit of recognition of damages caused and their claim for compensation. Pandemrix® was manufactured by GlaxoSmithKline.

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Call for national neurology plan following largest ever survey

10 July 2019
Neurological Alliance, survey

People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.

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Speaking today at the Royal Society of Medicine

10 May 2019
Royal Society of Medicine, Matt O'Neill

Narcolepsy UK represented at the Royal Society of Medicine event "Narcolepsy & Other Central Hypersomnias - Current and Future Trends".

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Workplace accommodations - Nikki's story

9 May 2019
National Trust, Erddig, Nikki, workplace, accommodations

Nikki works for the National Trust, and shares her experience of having to accommodate her job with her condition of narcolepsy.

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BBC radio Northampton interview

2 February 2019
BBC, Northampton, radio, Heather Korbey

Recently a person with narcolepsy, Heather Korbey, was interviewed on the BBC radio Northampton "Chaz Harrison" programme. We are grateful to Heather for taking the opportunity to help spread awareness of the condition and the reality of the way it affects her life.

The radio show is available to stream until 28th February 2019. Heather speaks about narcolepsy at around the 40 minute mark. It can be found by following this link: https://www.bbc.co.uk/sounds/play/p06wttll

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British Medical Journal article on Pandemrix vaccine

21 September 2018
BMJ, British Medical Journal, Ireland, pandemrix, vaccine

Publishing this link to today’s British Medical Journal article on the use of the Pandemrix vaccine.

Have to question where the BMJ have been for the last 9 years and why they have chosen to focus on events in the Republic of Ireland.

That story needs telling but so do they all. Perhaps it felt a bit too difficult to publicise here when we needed support.

Numbers quoted from our website are historic & we were not contacted to re-validate ahead of this article being published.

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Narcolepsy UK Conference 2018 presentation films now online

21 September 2018
conference, youtube, videos, films, clips, speakers, presentations, art, exhibition, creative

During the recent Narcolepsy UK 2018 Conference in Manchester, we were able to livestream some of the speakers on social media. This was great for keeping people not able to travel to be with us engaged with activities, but was not able to offer the full experience. In particular, slides were not visible and sound levels were very low due to the limitations of the equipment used.

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Radio interview with Sleepyhead author Henry Nicholls

19 September 2018
Sleepyhead, Henry Nicholls, radio, interview

Narcolepsy UK trustee and science writer Henry Nicholls recently published a book, "Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night". In relation to this he was interviewed, with 45 minutes of air time, talking about narcolepsy, cataplexy and sleep disorders on Jefferson Public Radio in the US yesterday morning. The full interview is here.

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Buzzfeed article covering swine flu vaccine and narcolepsy

23 February 2018
Buzzfeed, swine flu, pandemrix, NHS

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.

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