Lee's Blog Corner
I recently completed an online survey – that was supported by a number of UK mental health charities – researching people’s experience of Bipolar Disorder. It was pretty standard fair but one particular question gave me significant pause for thought. It was a question that concerned a matter that I had never given consideration which, given its importance was somewhat remiss of me. The question was, ‘After you received your diagnosis, how satisfied were you with the level of information about your condition that you received?’ and I had to check the box, ‘I never received any information’. It surprised me that I’d never thought about it because it is vitally important. Not only did I not receive any information when I was diagnosed but in the 7 years since I haven’t been told anything about Bipolar Disorder by any mental health professional. I’ve moved home a few times since diagnosis and each time a psychiatrist has given me the same psychiatric evaluation, told me to keep taking the medication and failed to tell me anything about what I should expect from this illness. I think the reason why I haven’t picked up on this omission is because I have always thought of mental health services in terms of the emotional and psychological support they provide (or often don’t) and not the information they don’t provide but knowing about the illness is vital to self-management.
When I was first diagnosed I was in a mixed state and really wasn’t in the frame of mind to ask any questions, not that the opportunity was given to me. The psychiatrist completed his evaluation, while at no point offering an explanation for the purpose of his questions, and when he finished he pronounced that I had Bipolar Disorder and prescribed a mood stabiliser, an anti-psychotic and an anti-depressant. He offered no explanation as to what I should expect from the medication or the course of the illness. I was assigned a Community Psychiatric Nurse (CPN) but she was equally unforthcoming with information. When I did get to a stage where I was well enough and interested enough to ask questions I was more often than not dismissed and patronised, which led to confrontation and aggravation. I often pointed out that I had Bipolar Disorder; I wasn’t stupid! Unfortunately, my experience of mental health professionals is that they are largely conceited and condescending, which I always find worrying given that psychiatry is such a subjective field of expertise. I’ve seen enough psychiatrists and read enough information to know that it is far from an exact science. All they have to go on is what we tell them, how we present (which may not be as bad as we have been) and a diagnostic manual. Every psychiatric evaluation I have received has been one way traffic. I’ve told them about how I am then, without explanation, they’ve told me what medication to take. It is a very generic approach to mental illness when, in fact, how mental illness manifests is idiosyncratic. Treatment of mental illness should be conversational and include an exchange of information but sadly, in my experience, psychiatry is something that is done to you and information is withheld. Of course, I accept that I may just have been unlucky in the postcode lottery but I suspect it is more than that. I hope people won’t hear what I’m not saying. I’m not just griping about mental health professionals. It is more that not passing on information can be dangerous.
The National Institute for Health and Clinical Excellence (NICE) in the UK states, in its guidelines for the treatment of Bipolar Disorder that, ‘Healthcare professionals should establish and maintain collaborative relationships with patients and their families and carers (within the normal bounds of confidentiality), be respectful of the patient’s knowledge and experience of the illness, and provide relevant information (including written information) at every stage of assessment, diagnosis and treatment (including the proper use and likely side-effect profile of medication’. This is incredibly good advice but in my experience it has never happened. Others may have had a very different experience but it should be an approach that is across the board. (I would be very interested in other people’s experience; you can contact me on Twitter @noroomonthehill). The treatment of Bipolar Disorder should be collaborative, it should involve family, medics should take heed of the patient’s knowledge and experience and information should be given to the patient and family at all stages of the process. To not do this is to treat the patient just as an illness and not a human being with there own thoughts, feelings, awareness and intelligence. The last time I saw a psychiatrist she told me that she had to treat the illness and not the person. I thanked her for her time and walked out. Later the same week I received a phone call from a CPN asking to see me on the basis of a referral from the psychiatrist who, because I had refused to be treated as illness, assumed that it was my illness that was making me uncooperative. I explained to the CPN what had happened and that I was stable and that, at that time, I didn’t need her intervention. As a brief aside, I find that often people blame my behaviour on Bipolar and thus dismiss me when actually I’m just being my usual forthright self. I know what I know; I know how I think and I like how I think. Anyone, including medical staff, who don’t want to take this into account, are not worth the time. I accumulated my knowledge – including about Bipolar – through research, experience and reflection but it would have helped if those assigned to help me had provided me with information too.
After my diagnosis, when I was well enough, I turned to the internet for information but this can be dangerous if one doesn’t know how to research properly. I imagine that many people who, like me, weren’t given the appropriate information turn to the internet and some will have come across the lunatic (pardon the pun) fringe who would advise against taking medication while supporting other non-evidence-based remedies. This is why it is so dangerous for mental health teams not to follow the NICE guidelines. I collated various information from reputable websites and compiled a file that I could share with my family. I also spent time reflecting on my life and identifying how Bipolar had affected me. I’ve also always been willing to talk about my illness to anyone with an interest which, sadly, hasn’t been many but then I’m not surprised. My wife still has the file I collated and she finds it useful but both my mother and my sister read it and they still deserted me in the mental health unit 4 years ago. Maybe, if the information had come from the professionals, it might have been different.
I readily accept that my experience of psychiatric staff may well be in the minority but even if it is there is clearly work that needs to be done. We can’t be expected to be challenging stigma if the professionals just treat us as an illness. They need to listen to us without just listening for symptoms of an illness. They need to share what they know and accept what we know so that as we exchange information to become or remain stable the care we receive is person-centred and not just driven by a list of symptoms in a diagnostic manual. They may know about Bipolar Disorder but so do we and furthermore, we know how it affects us.