Hear my voice | One day something went wrong

This latest blog comes from a successful business consultant whose life seemed to be going about as well as it could until, as he puts it, ‘one day something went wrong’ leading to a diagnosis of bipolar disorder. Read his experiences of  being diagnosed (and misdiagnosed) and the different ways he was treated by professionals:

“I was working in London as a successful business consultant, living in Barcelona, having a wonderful time. No stresses in my life whatsoever. Good life, good clients and one day something went wrong and I am not sure what. I started to behave in a very unusual way. I was 35/36 at the time.

“It was very unusual for me to lose control, but my moods were being affected. I would be in the supermarket or on a bus and would break down in tears for no real reason except that I wasn’t sure what was going on. The thoughts in my head were going so slowly and I couldn’t work out where I was going next, but knew exactly where to get off. A week later I would be the liveliest person in the world, taking time off so I could go out partying. Drinking excessive amounts of alcohol wasn’t unusual, but during the week it was. I’d never before done it while I was working. That went on for about two months. It had been noticed by other people, but they never approached the subject.

“Because my life was Barcelona and London, I managed to avoid people on a regular basis. Work had seen me more regularly and I was lucky enough that one of the people I was working with had had mental health problems and she approached me and asked if I had considered it might be that, and I hadn’t. One day at work I started to cry and I couldn’t stop and I think after about two hours this person dragged me to the local GP who she had had experience of.

“The GP found out I had bipolar in the family. I started to think a bit more about it. Because of the desperate state I was in, they referred me to a psychiatrist within a week. I had private health care. I saw the psychiatrist at least once a week, partly for counselling and partly for diagnosis. I had been diagnosed with a form of bipolar disorder. My natural instinct was to tell everyone I knew. I took control of it. That was my way of dealing with it.

“I was self-employed and I could make that decision there and then and said I was stopping work for six months. I went to Barcelona and only came back to see the psychiatrist. I was able to go back to work part time after six months. I was put on medication straight from diagnosis. It was an unusual drug – Lamotrigene.  It’s an anti-epileptic drug and hadn’t been used in this country by the NHS.

“He put me on fish oils. That worked quickly. I recovered my life pretty quickly. The only thing I didn’t do was change my life. I was still drinking – never a good idea with mental health. I didn’t change my life and within 18 months had another episode which knocked me for six. At that point I was no longer able to afford the private healthcare. I was put on a waiting list for 18 months.

“I was told by a different psychiatrist that I didn’t have bipolar. After a 20 minute interview, that was a quick leap. They lost my notes and then told me that they thought I had mild depression. They took me off the medication and didn’t monitor me. My mental health deteriorated very quickly. I had to stop working. I lost my home because I was living in a place in London I was sharing with other people and they couldn’t cope with my behaviour. I finally had to come back to Essex, just as I was turning 40, and to come back and live with my parents was difficult for me, and for them.

“I was very lucky. I had an ear infection while I was staying with my parents and went to see their GP. They noticed that although I had bipolar I wasn’t on any medication. I think they made a complaint to my GP in London. They suggested I went on an anti-depressant which I had been on about four years ago. The temporary GP monitored me quite closely. I moved here and transferred to this GP.

“I had the IAPT service, talking therapies, and unfortunately that didn’t go great. I was told on my first therapy that the counsellor didn’t believe in mental health. My GP told me I should challenge it, which I did. If she had said it to someone else I would be concerned that they would go home and say they didn’t need more medication.

“The consultant that I was seeing at the time was struck off for sexual misconduct. There were issues with trust. Had this person diagnosed me correctly? I was strong enough to have read most of the literature about being bipolar. I had come to a decision about it myself. Depression doesn’t answer all of the questions which bipolar answers.

“It cost £40,000 altogether in private healthcare. It was great because of the speed. I was seen weekly at my convenience. On the NHS I was waiting for 18 months and I saw my mental health deteriorating. The GP in London was sympathetic. I had a red flag on my records so he would see me if I needed it. He took on board all the notes from my psychiatrist in Harley Street and was great at the beginning.

“What I didn’t like was as soon as this person said they didn’t think I had bipolar the attitude changed. The GP went with the psychiatrist’s view. She had seen me for 20 minutes. He had known me for over a year. I put in a complaint and got a second opinion. That took two years, and my mental health deteriorated. She said I had bipolar, but they didn’t offer me anything after that. I lost support, I lost control and I lost confidence. I would like them to have supported me, not to have supported the psychiatrist. It was over a year since they had seen me and taken me off the drugs.

“The first GP in Essex that I saw was a locum. He took time and sat down with me for a good half hour and took my entire history. I don’t know what would have happened if I hadn’t had an ear infection. I wouldn’t have gone.

“I saw a series of GPs, at the practice in Essex. They listened and took time. They almost considered me the expert. If I needed to see a psychiatrist, they would arrange that. If I needed medication they would arrange that. I changed my medication, it didn’t work, and we changed back. They put me back on the omega three oils. It’s not a drug that is recognised to support mental wellbeing, but I benefitted from that. They have been a support in that way.

“Consistency is a big problem. I have never had the same psychiatrist twice. I have had to repeat myself every time. The periods between psychiatrists are too long sometimes. We are given the impression that we can drop in any time, but it’s not true. We have to make an appointment.

“Early intervention never really gets mentioned. What I want to be comfortable with is that when I do become ill that I can go and see someone immediately. I would like someone who can say, ‘I know you’. I would like a personal service.

“In psychiatry it seems to be that they will send you to whoever is available. It’s not ever them asking, ‘who is appropriate?’ You often see someone who is qualified in eating disorders or drug and alcohol. I don’t have a problem with these areas, that just happens to be your speciality, and you have put me in a box. I want to see someone who is a specialist for what I think I have.

“We see psychiatrists as GPs for mental health. I would like there to be a lot more specialists. Their knowledge of what is going on in their community needs to be better. As peer support workers, we have to keep up-to-date on every support group, every activity, everything within the mental health community or outside of that. A walking group has started or a knitting group has started … That should be the role of the community nurses and care co-ordinators, to signpost to other opportunities. There are leaflets, but I want to have a referral from someone who has been there and talked to someone there. Whose role is that? A social worker’s role, or a GPs role? I think all of them should be a little bit more aware.

“I have a full time job. I do all these other things as well, whereas they get paid to do this. I understand that they are under a lot of pressure, time-wise, but I would like them to support other organisations. I would like them to do that with all other service providers around. We have talked about having a database list and I have worked with Healthwatch on the phone system. It would be good for GPs to be able to pull up services to suit the person.”

– Wayne from Essex