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Narcolepsy Charter

Resource article
charter, survey

Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Narcolepsy Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.

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Narcolepsy Charter launches

Blog post
12 August 2019
charter, survey, rights

We believe that people with narcolepsy and their families and friends have the same rights to a full and rounded life as any other person without having to make this happen. The Charter is a written statement of these rights based on responses to an online survey of 302 people with narcolepsy and 149 supporters undertaken by Adelphi Research. The survey was made possible with support from Adelphi Research, Lincoln Medical Limited, The National Lottery Community Fund and UCB Pharma.

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Call for national neurology plan following largest ever survey

Blog post
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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Neurological Patient Experience survey (England)

Blog post
20 December 2018
NA, neurological, Neurological Alliance, survey, patient experience, England

In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.

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Narcolepsy UK welcomes second neurological patient experience survey

Blog post
7 July 2016
NA, neurological, Neurological Alliance, survey, patient experience, England

The Neurological Alliance has launched its second neurological patient experience survey. The survey aims to collect vital information about the experiences of care received by people affected by neurological conditions and help us to understand how much progress has been made in improving neurological services.

The survey is open until 30 September 2016 and the Alliance welcomes responses from anyone with a neurological condition living in England.

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Narcolepsy UK Conference: just days to go!

Blog post
3 September 2018
conference, Manchester, survey, charter, familial, Rosa Peraita-Adrados, Royal Society of Medicine, medicine & me

We are now into the final few days before our annual conference in Manchester and are making great progress in pulling together the key themes & focus areas from our recent survey. We hope you all booked your tickets to hear and see the results first-hand as we prepare to translate these into our Narcolepsy Charter.

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Charter Questionnaire is now closed

Blog post
3 August 2018
charter, survey, questionnaire

All of us here at Narcolepsy UK would like to say thank you for the massive response you provided to our charter questionnaire. We are already busily reviewing the content to present to you at the annual conference in Manchester 8th-9th September. 

Looking forward to seeing as many of you there as possible.

Link to conference booking - https://www.narcolepsy.org.uk/civicrm/event/info?reset=1&id=89

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Narcolepsy Charter – Consultation goes live!

Blog post
28 June 2018
charter, survey, questionnaire

One of our most important projects for 2018 is the development of the Narcolepsy Charter.

Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.

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Narcolepsy Charter - survey being developed

Blog post
9 March 2018
charter, survey, questionnaire

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.

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European Narcolepsy Day, Palma, Mallorca 2017 - Highlights

Blog post
Matt O'Neill
24 March 2017
European Narcolepsy Network, European Narcolepsy Day, Flamel, European Patient Advisory Group, Bioprojet, Wakix, Pitolisant, Neurological Alliance, Disability Rights UK, PIP, survey

Mid-March is always our busiest time of year, with more meet-ups arranged around the country each year and the gathering of the clans at the European Narcolepsy Network “European Narcolepsy Day” meeting held in a different host nation each year and now in it’s 8th year.

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