Damian Bradley, 25
My Story: Fighting for funding

I was diagnosed as having narcolepsy with cataplexy in October 2006 and this was confirmed by laboratory testing in January 2007. However, the onset of symptoms had been back in summer 2003 after my second year at university. After 4 years of uncertainty and desperately seeking medical advice in a bid to identify the true cause of my symptoms, securing a definite diagnosis gave me a huge sense of relief and real hope that I would finally be able to treat the problem.

The challenge didn’t stop there, however, as my best chance of successful treatment was thought to be with the drug Xyrem, which is not automatically funded by all Primary Care Trusts (PCTs). As a result my consultant had to make a funding application to the local PCT on my behalf.

Unfortunately for people with narcolepsy, sleep medicine attracts little awareness at a national level, and NICE will not be reviewing Xyrem. This does not mean that Xyrem is not cost-effective, just that, unlike other drugs, it will not be rolled out across the country systematically. The only option is to apply for Xyrem through the ‘individual case’ route which can be time consuming and extremely frustrating, as I found to be the case.

I first applied for Xyrem on the 5th April 2007 but my application was refused for reasons that I knew were completely invalid and made little sense. The PCT panel felt the fact that the Scottish Medical Consortium hadn’t recommended Xyrem in Scotland and the lack of NICE guidance on the drug here in England indicated a lack of evidence that it was an effective treatment.  After appealing the decision on two occasions, only to be refused both times, I enlisted the support of my Member of Parliament who wrote to the Chief Exectutive Officer of the PCT to request that I be allowed to try the drug for a period of three months. Again, I was refused.

It felt so unjust for a group of strangers to assume that funding my treatment was not a cost-effective option when they knew nothing of the reality of how narcolepsy was restricting my daily life, or what it was likely to cost me in terms of my future.

After my fourth appeal had been declined, I felt I had no other option but to inform the PCT that I would question the legality of their decision in a court of law in order to overturn the refusal.

In response to the threat of a legal battle the PCT held a final appeal of my case. But despite my hopes, the panel again concluded that the evidence base for Xyrem was not sufficient to confirm its cost-effectiveness and decided to write to another sleep centre for confirmation. A second ‘final appeal’ was held in January 2008 and eventually my PCT sanctioned the use of Xyrem after receiving confirmation of the evidence base of the drug from specialists at Papworth Sleep Centre in Cambridge.

I was relieved finally to get a positive decision, but furious that it had taken so long. Confirmation from Papworth was completely unnecessary since my PCT had been provided with all the information they needed by my own consultant. Even if confirmation were required, the PCT could have written to Papworth some eight months previously and saved everyone involved a lot of time and distress.

I was granted a three-month trial and thankfully found Xyrem to be well tolerated and easy to use. Now on the right medication for me, I’ve been relieved of the horrible hallucinations and cataplexy attacks and I can finally get consolidated and restorative sleep. I can get up in the morning and for the first time feel refreshed and energised, and able not only to stay awake for the whole day, but concentrate and do things without any fear of symptoms.