Queen of Sleep

Living with narcolepsy: a personal journey

Sodium Oxybate Update

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I went to see my specialist mid-February and he told me that my application for Sodium Oxybate had been declined. My local Primary Care Trust gave 2 reasons: 1. The most recent health update/check was from August and they wanted a newer one. 2. Sodium Oxybate contains high levels of salt which they thought would be bad for my health.

Apparently, it is common to be turned down at the first instance so now my specialist has resubmitted my application with an up to date screening and a reassurance that the levels of salt in Sodium Oxybate would not cause me any danger.

I will keep you updated with any further progress. I can’t believe it has now taken minimum 1, 5 years almost 2 years for the PCT to respond. 2 years ago I thought I was going to move so there was no point applying, and then when I found out that I had to stay my neurologist submitted the application. I called them up after 5 months to check if they had received it, and when they prescribing committee had scheduled a time for it to be considered in a meeting. The assistant who logs and deals with all applications said she didn’t remember my name but she would have a look just in case. She did and it had never arrived so last year in October when I had my appointment with my neurologist I said that it never had been received by my PCT. It had been sent to the wrong PCT by mistake. Oops! Eventually, he submitted an application to the right instance, it got rejected and now he has resubmitted it on my behalf.

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Written by Queen of Sleep

April 1, 2011 at 9:05 am

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