Fantastic news following discussion with the British Sleep Society http://www.sleepsociety.org.uk. Please read their written support below. This is extremely welcome and shows that those involved in our treatment understand, are sympathetic and are equally demanding of change. "Committee members of the British Sleep Society (BSS) who are involved in the management of narcolepsy can confirm that there are significant issues with availability of the most effective drugs. When severe, narcolepsy is a debilitating and disabling illness that impacts on all areas of daily functioning across 24 hours. Medication is rarely curative but usually has a positive and significant effect on the core symptoms. The most effective drugs are relatively expensive and, by the nature of narcolepsy, are given on a long-term basis. It seems clear that the availability of treatment varies enormously across the UK and the application process for Individual Funding Requests is flawed. In particular, the issues of drug “cost effectiveness” and patient “exceptionality” are poorly defined and not widely understood. Physicians treating the significant minority of patients with narcolepsy who are not well controlled on conventional medication are frequently frustrated by the current system that determines drug availability. Further clarity on decision making and improved assessment tools for narcolepsy are urgently needed." British Sleep Society