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Stop denying access to medication for people with narcolepsy

This petition had 6,515 supporters


Narcolepsy is a chronic neurological condition that seriously affects the basic human sleep function of about 31,000 people in the UK, which is about 1 in 2,000 of the population. It affects the brains' ability to regulate the normal sleep-wake cycle. This leads to symptoms such as disturbed night-time sleep and excessive sleepiness throughout the day, cataplexy (sudden loss of muscle tone), and other related problems.

Effective and approved medication (particularly modafinil and sodium oxybate) could be available for people with narcolepsy in the U.K. but many NHS Clinical Commissioning Groups across the country routinely "blacklist" or deny patients this medication they need by stating it is either [in their opinion] "not cost-effective" or by reference to the irrelevant consideration of how it is sometimes abused by people who don’t have narcolepsy.  

We believe the right to access effective medication is a fundamental human right. It should not be down to the judgement of either an accountant or a pharmacist in the NHS to deny an individual the right of access to treatment that could see them function in society as either a family member, work colleague or simply a friend to others. We believe that clinical doctors are in the best position to judge the most effective medication and in consultation with their patient, their recommendation as to medication should be given priority – not the decision of accountants and/or finance controllers of CCGs.

Without your help, people of every ethnicity, gender, social class and age-group will continue to be denied access to medication that is defined as the primary effective treatment in the European “Handbook of Neurology”. 

We hear much about how bad being part of the European Union is for the U.K. and not enough about how the E.U. protects UK citizens by publishing such advice.

People with Narcolepsy in the U.K. are European and demand that the U.K. government step-up to their responsibilities and engage the NHS now to end the widespread blacklisting and spurious refusal of medications prescribed and available in Europe & worldwide.

For more information please visit http://www.narcolepsy.org.uk



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