Editors note: This blog was originally published 23/3/2017 on Mad In America. We are publishing this now in tandem with Rufus and Chris’s recent interview on the Guardian here
By law people can now be forced to take medication once they’ve been discharged and are living back in the community, if they have had several hospital admissions for psychosis. When I was forced to take medication in Hackney Hospital, I am pretty sure it put me off the stuff for life. Maybe if I had been given more choice about how and when I used it I would have found it more helpful. I think I definitely needed some strategies to get some sleep, and if I had been told to take something temporarily to help with sleep I think I would have agreed to try it.
To make things worse, not only did I have to take drugs against my will but they also had so many unpleasant side effects that I felt they were making my life more difficult, not less. I told my father that “I’d rather be mad not on drugs, than sane on the drugs.” It’s quite possible that under today’s laws I would have been put on a community treatment order and forced to take the drugs indefinitely. On the drugs I am certain I would not have had the capability to train as a psychologist.
A few years ago, I was asked to see a man called Chris Rushworth. He lived in supportive accommodation in Bradford and had done so for many years. He was referred to me for anger issues. He was a slim man in his mid-forties with heavily tattooed arms. When I first met him he seemed a little suspicious of me. He talked of having met with a psychologist previously and how it hadn’t really made much difference to his problems. Then he recognised me from the TV documentary I had done and that seemed to make him relax a bit with me. He’d enjoyed seeing the part of the film where I challenged the psychiatrist Trevor Turner.
Chris had a restlessness about him, frequently shifting his legs from side to side. He had been on antipsychotic medication for 25 years. I thought the restlessness was likely to be a side effect of the drugs he was being prescribed. I tried my best to listen to him each week while he talked at an impressive pace about his experiences. My intention was to really try and hear him. At times his hopelessness about whether things could change felt draining to hear. He spoke about the staff where he lived who didn’t respect his privacy, the doctors who had not listened to him and the psychologist who had told him to lower his expectations about what he could achieve. On a few occasions I felt disconcerted by the fact that I found myself getting drowsy. It seemed that because Chris’s anger was painful to hear, part of me wanted to switch off and sleep.
Perhaps I found the injustice of what Chris had experienced difficult to hear. My more privileged background meant I had had more opportunities to get out of the system than him. What was it like for him to meet with me, knowing this? Every time Chris had asked for a medication reduction he had been told it was a bad idea and now he had a painful and uncontrollable restlessness in his legs. I knew that the nerve damage might be permanent. He felt treated like a second class citizen by most of the mental health staff he had come across. Chris knew what caring should look like because he had been caring for his mother who had dementia for the last five years. He regularly took her out from the care home she lived in for day trips to Scarborough and Durham. I felt he was right to be angry about the lack of respect he had experienced. He had repeatedly felt the impact of being undervalued and this seemed to have scarred him. I wanted things to change for Chris, but first he needed to grieve and I needed to listen.
Chris was the middle born of seven brothers. His dad worked in a warehouse so money was tight. When he was eight, he fell off a climbing frame and was unconscious for two days. He speculated that this led him to have problems with reading and writing. At secondary school his illiteracy really affected his confidence. His brothers teased him about his literacy problems and he became very shy and lacking in confidence. When he left school at sixteen he discovered alcohol. When he drank, his anxiety disappeared which meant he could stand up for himself and chat up girls. For four years he drank heavily and if he didn’t feel heard, he could often be aggressive. One night he got beaten up by a couple after he went to their home, thinking they were throwing a party. A month later he went back to the house for revenge. He waited for the boyfriend to come back to the house and then attacked him. However he was so drunk he didn’t realise it was not the man who had assaulted him.
In court he was sent to a forensic psychiatric unit to be treated for his alcoholism. After a month, he started to go back to work while still living at the unit. After four months he started to struggle mentally. Chris didn’t know what to do about his social anxiety, and we think that because it had laid buried under booze for years, it had become more potent and paranoid. He also didn’t know how to relax and sleep without the sedative effects of drink. He became overwhelmed with paranoia and suicidal feelings. He was stopped from working, put on antipsychotic medication and was in hospital for the next two and half years. The diagnosis he was given was paranoid schizophrenia.
For the next twenty years Chris was in and out of hospital. He was heavily sedated and lethargic but every time he asked to have his medication reduced, he was told it was keeping him well. He felt depleted of energy and he was encouraged to accept the life of a mentally ill person.
A turning point came when he turned forty, after he saw how distressed his mother was when she came to visit him after he had taken an overdose. She was now in a care home and suffering from dementia. He realised that if he wanted to have quality time with her while she was still alive he was going to need to sort himself out. He managed to get a lower dose of medication and took up long distance running. He started volunteering at a care home and met a German woman whom he started to date.
I met Chris a few years after this. I was the first mental health worker to say I thought his restlessness was caused by his drugs. I supported him to negotiate a gradual reduction in his antipsychotic medication. Five years ago he stopped it completely but stayed on the drug lithium, which he found helpful. Although he still had constant restlessness in his legs, the pain he experienced was reduced significantly. I also encouraged Chris to go to literacy classes and train as a mental health advocate. I felt his anger could be usefully channelled into helping other people get their needs better listened to by health professionals.
Chris’s life improved even more when his estranged daughter got in touch. She was now sixteen but he had not seen her since she was a baby and had been discouraged from pursuing contact with her. They began to meet regularly and formed a good relationship. He also got the confidence to move out of supportive accommodation, which he clearly hated, into his own flat. He told me how his brothers now felt a bit ashamed that they’d persuaded him to keep taking the meds and they’d realised they’d missed out on the brother they’d lost.
I also supported him to make a complaint against the Trust. I wrote a report saying that I thought Chris had been both misdiagnosed and overmedicated for many years. The Trust refused to agree with my report and Chris’s view that services had let him down.
When I interviewed Chris for this article, the first thing he mentioned was the health trust denying they had mistreated him: “The chief executive was perfectly satisfied I didn’t suffer any long-term damage from the medication and I wasn’t overprescribed. He said the doctors acted in my best interests. If that was the case, then why didn’t they listen to me and work with what I wanted? In their mind there is no other approach apart from drug treatment.” I sensed that the way management had defended how Chris had been treated had added salt to his wounds.
Chris was still seeing a psychologist once every six weeks. “My psychologist says I have a voice now that I have come off the meds and I haven’t relapsed after five years. But surely I had a voice before — the problem was no one was listening. It feels a bit late now to have a voice.” “Do you think you’ve missed out on learning ways to use your mind?” I asked him. “Definitely,” he said. “All that medication over so many years was unnecessary. Nobody seemed bothered, they just wrote me off as a nobody who couldn’t progress.”
“I was in a similar situation to you when I was eighteen, but probably because of my education I was able to speak up and get listened to more,” I said. Chris nodded. “There are two things that blocked me being listened to,” he said. “Firstly because I wasn’t educated, and secondly because I got done for GBH (grievous bodily harm) when I was drunk.”
“How do you think your treatment affected you?” I asked him. He said, “Being sedated took away my personality. I knew it was slowing me down and made me unattractive to women. It was a struggle to stay awake — I couldn’t even follow a conversation. Medication takes away all your faculties. I was only twenty and I had hopes of getting a job and getting married. But in rehab, everything stopped for me, there was nothing to do. For a professional that seems acceptable. They took away my quality of life.” Chris’s testimony made me think of the recent studies showing how antipsychotic medication progressively reduces the size of the brain and how mainstream psychiatry is still in denial about this finding.
Chris told me about how his doctor of many years had misled him, telling him the drugs were keeping him well, and always making sure that she had other staff with her to back her up when he challenged this. She always played down the negative effects of the medication. “If she had listened to me I might not be suffering the way I do now. Being fobbed off hurts. They had an answer for everything,” he said. Chris felt if he had been allowed to go through the paranoia unmedicated he could have come out the other side and not be living with the nerve damage he now had. He believed he was much healthier now that he was off the drugs he had been told were keeping him well. Although he still felt a lot of tension and agitation and struggled with his sleep, he felt a renewed awareness of his senses that he hadn’t felt in years. He described how he felt like he was growing up again and slowly getting to know himself again.
Chris attended the monthly Evolving Minds meetings I facilitate, and there he often talked about his anger towards mental health services. I sometimes worried that the anger was consuming Chris, blocking him from other conversations and experiences. I wanted to explore this with him. “Are you bitter?” I asked. “I’m bitter against the system.” “Maybe the anger is blocking you from the sadness you feel about your life?” “What happened to me wasn’t right. If I accept what happened, it will make it right,” he said. It was a strong argument. Chris told me that his restlessness made him feel so uncomfortable that he could cry.
I tried to imagine never being able to relax. I felt torn between trying to think of a solution to his anger and restlessness and wanting to just stay and be a witness to the discomfort he felt daily. He told me how difficult it was to share the bed with his girlfriend, and I remembered one night when I slept in the same barn as Chris on a retreat and how his constant tossing and turning in his noisy sleeping bag kept me awake for many hours.
Chris had also had his case against the Trust taken on by medical negligence lawyers, but when they requested an independent doctor to review the case, the doctor refused to criticise Chris’s past treatment. Unlike with physical health, hardly any cases of clinical negligence in mental health have ever been proved.
I talked with Chris about restorative justice, where perpetrators have to face their victims and hear the impact their crime has had on the person in front of them. I suggested that in some ways he was like a victim of a crime who has not felt that their concerns and injuries have been listened to. I offered to set up a meeting with a psychiatrist who could empathise with him, to which he wearily agreed. I thought that having a trained psychiatrist acknowledge he could have been treated differently would release Chris from some of the anger and preoccupation with his past. The only doctor Chris felt had ever empathised with him was the doctor who looked after his kidneys. Chris explained how Dr Jeffries had always treated him as a human being and never blamed him for his overdoses. He also took an interest in Chris’s long-distance running and his life more generally, not just his health problems.
I thought about my own fear and prejudice toward medical doctors that sometimes rears up — how I generally avoid seeing my GP, and my aversion to medical TV dramas, especially Hugh Laurie’s character in ‘House’. The idea of the self-assured doctor clearly still grated on me.
“My experience of psychiatry is, you’re not treated as an individual. You are asked a battery of pre-prepared questions and they try and control your life. Keeping talking about it helps me,” said Chris. I said, “I just wonder what would make you feel heard so you could enjoy life more.”
After our meeting, I called up a friend of mine who worked as a psychiatrist with an Assertive Outreach team and asked if he would meet with me and Chris, but the next time I spoke to Chris he had changed his mind. He was doubtful of what the meeting could achieve and still felt very hurt that he’d been forced to have a treatment which ruined his quality of life. He now had to cope with the consequences of their actions every day for the rest of his life. He was still angry that they hadn’t admitted that they’d done anything wrong, and unless he received an acknowledgement of this in writing, he thought the meeting would be pointless.
I thought back to my report about Chris’s past treatment and how it had led to a slightly tense meeting with the psychology lead manager for the Trust. I had been warned that I should have cleared my report with the complaints department before giving it to Chris. I wondered what the pressure was like on doctors not to criticise their peers.
While Chris wasn’t interested in meeting with my psychiatrist friend, he was interested in coming on a mindfulness retreat we were organising. He also wanted me to mention his full name in this piece to make the point that he would not go quietly about what he had been through at the hands of mental health professionals. As I finished the interview with Chris, I thought about what it must be like to live with constant uneasiness that you know has been caused by people supposed to help you. When Chris talks in detail about his frustration with mental health services, I feel that agitation. Part of me wants it to stop, and part of me thinks that we as a community need to tolerate this restless unease. After all, Chris lives with it constantly.