Blog: In the media

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Narcolepsy sufferers face uphill struggle in Wales

7 December 2016

The lack of a treatment centre in Wales for people suffering from narcolepsy is causing problems for people with the condition.

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

4 December 2016

NHS England’s Specialised Services announce they will routinely commission Sodium oxybate for symptom control for narcolepsy with cataplexy (children).

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European health commissioner to face calls for EU-wide inquiry into aftermath of swine flu vaccine

4 December 2016

The Pandemrix Narcolepsy European Alliance will tell the European Commissioner for Health and Food Safety next week that he needs to launch a pan-EU public inquiry into the cases of narcolepsy that were triggered by use of the Pandemrix vaccine to treat the 2009/10 swine flu outbreak.

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NHS England AGM 2016 - video recording

12 November 2016

NHS England’s Annual General Meeting (AGM) took place on 25 October 2016 at the Royal College of Obstetricians and Gynaecologists, London. Narcolepsy UK were invited to attend, and our chair was able to ask a question from the floor during the Q&A section.

NHS England have now published online the recordings of the AGM.

Click here to visit the NHS England page for the AGM recordings

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Response to inquest result after death of narcolepsy sufferer

11 August 2016

All Katie ever wanted was to work with children and it was this desire that led to her employer requiring her to have the Pandemrix (H1N1) influenza vaccination in 2009.

One simple life decision led to a domino effect that led to Katie’s death on 23 September 2014. This vaccination, and delays in medical treatment combined with a lack of understanding of the extremely debilitating nature of narcolepsy all contributed to this tragic situation.

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Inquest into death of narcolepsy sufferer concludes

4 August 2016

The inquest into the tragic death of Katie Clack concluded earlier today with the Senior Coroner for South Lincolnshire proposing the delivery of his conclusion, in writing, in Boston, Lincolnshire at 2pm Wednesday, 10 August 2016.

There will be no further comments made by either the family, their legal representatives or Narcolepsy UK until after the conclusion is received.

If you have been affected in any way by the facts publicised about this terrible event, you may find the attached links useful.

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Inquest into death of narcolepsy sufferer

1 August 2016

Many of you will remember our collective sadness when we revealed the tragic news that Katie Clack, a fellow narcolepsy sufferer, had lost her life on 23 September 2014 after falling from the top of Queensgate car park in Peterborough.

This week, a two day inquest into her death will be held by the Senior Coroner for South Lincolnshire and our Chair, Matt O’Neill will be attending on behalf of Narcolepsy UK to provide her family with some support at what will be a very difficult time for them.

Further information can be found via the links below.

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Animated short released

29 June 2016

An animated short was kindly shared with us recently, and we are pleased to be able to show it to you here.

From the creator:
"The film is about my younger sister, Honor. She is from Harrogate, North Yorkshire. She is 18 and just finished her a-levels. She developed narcolepsy when she was 13. 

My name is Melissa. I have just graduated from the BA Graphic Design course at Camberwell College of Arts in London. I made the short film for my final project, with the aim of raising awareness of Narcolepsy. 

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High Court judgement about Sodium Oxybate made public

16 June 2016

The judgment of the High Court in the judicial review about NHS England's refusal to fund sodium oxybate for a child was handed down on 15th June. It is now in the public domain and here is a link to it for anyone interested. www.bailii.org/ew/cases/EWHC/Admin/2016/1395.html

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USA - Feds Probe Drugmaker-Charity Connections

3 June 2016

Narcolepsy UK receives no funding from pharmaceutical companies and in the event that we were approached, we have a very transparent and strict criteria that must be adhered to.

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