Medical Guidelines and lived experience

Many like me will welcome the news that NICE has amended its guidelines on depression. The hope must be that there will be better understanding and support for those, like me, who find themselves dependent on a prescribed drug.

I have been taking Paroxetine for over two decades and have been unsuccessful in trying to stop it, however slowly I have tried to do so. I  now find myself struggling with withdrawal symptoms even though I am on the original dose of Paroxetine. My sleep is terrible with rapid waking, vivid dreams and buzzing in my head. Apart from anything else, the lack of sleep affects my ability to work the next day. I am hoping that this updated NICE guidance might make the medical profession more open to listening to my experience and for there to be more empathy and genuine support. Last year when I attended an Occupational Health Consultant I found little understanding.  The lack of empathy and the fact that there was no support offered, left me in considerable fear of seeking help again.

As with many Guidelines, those which cover the treatment of depression rely almost exclusively on short-term studies (rarely longer than 3 months) whereas in reality patients are often taking antidepressants much longer than is recommended and often indefinitely.

This example highlights that ‘Evidence Based Medicine’ must include experience that extends beyond the short term. It is all a bit too late for me and others but I would like to see recognition from those who – like me support evidence based medicine – that no base of knowledge can be complete without considerations of time and real world experience. In a current editorial in the BMJ it is suggested that “I don’t know” can be the trigger for a more nuanced and more honest conversation.”

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