Michael - Interview 31

Age at interview: 49

Age at diagnosis: 15

Brief Outline: Michael, 49, describes himself as a European Ashkenazi Jew. He has been given a variety of diagnoses, including bipolar affective disorder, personality disorder, paranoid schizophrenia, learning disability, and severe mental impairment.

Background: Single. Ethnic background/nationality: European Ashkenazi (Jewish) (born in UK).

More about me...

Michael, 49, describes himself as a European Ashkenazi Jew. He has been diagnosed with bipolar affective disorder, personality disorder and paranoid schizophrenia. 

Michael was admitted to a mental health unit for observation as a voluntary patient. Michael says he was happy to be hospitalised in order to escape the sexual abuse he was experiencing in the community' he had been drugged and raped. Michael says he was also raped whilst in hospital by a visitor but could not access the physical health care he needed. Michael believes that the sexual abuse he experienced was not taken into account in hospital because of his ethnicity and because of his diagnosis of severe mental impairment which made it difficult in general to access care for physical health problems.

Michael disagrees with his diagnoses for several reasons' he says that his mania was caused by the drugs he was given in hospital and that he does not experience depression. Michael also says that when he was admitted, he was suspected of using heroin and given methadone and it was this that caused his symptoms. Michael says that it could be argued that he disagrees with his diagnoses because he is psychotic and mentally incapacitated. He says that he may have been labelled as delusional because he made serious allegations against the Mental Health Trust but he argues that these accusations have been backed up by investigations. Michael says that being diagnosed with learning disability and severe mental impairment meant that he could be given medication surreptitiously under the 'Bournewood gap'. He believes that patients were given drugs surreptitiously to provoke symptoms. He says that the staff involved have been sacked, suspended and retired but he's not certain if that is related to what happened to him or a coincidence.

Michael says his mental health trust was not able to provide culturally competent care. He says that the nurses in the hospital were mainly of African origin, and that their version of the social model differs from that of British culture, although ultimately, it is the white establishment that has all the power. He says that there was only a Christian chaplain at the hospital and when he questioned the absence of a Jewish or Muslim chaplain, he was given the impression that religion can aggravate pathology. Michael says that assumptions were made about him and his behaviour based on stereotypes about Jewish people and his religious education. Michael believes that each person has their own 'micro-ethnicity' that can only be discovered by talking to and observing people.

Michael says there is too much reliance on the social model of mental health (the idea that social factors cause mental illness). He says that the social model ignores bodily needs and relies on stereotypes and this could be avoided under the medical-legal model. Michael's view is that mental health problems can be caused by psycho-stimulants (amphetamine, methamphetamine, cocaine). Michael believes that drug education and testing should be introduced in mental health trusts for patients, staff and carers. He also believes that a Serious Untoward Incident investigation should be conducted in the event of every death (not just suicide) of a current or recently discharged patient.

Michael says if you have made a complaint, keep talking about your experience to managers and...

I would like, like to say that don't ever expect an apology but be prepared to keep talking about your experience and not just to talk within the immediate circle who, who are caring for you but to talk to people beyond people in head office. People like local councillors. People who manage the people who manage the people who manage the people who manage the people. Don't just talk to a small circle of, of people. I would think that, that you, you need to make it very clear that you're, you're not like rebelling and you're, you're trying to seek clarification. You're trying to ask people to do things by the book. You're trying to ask for due process to be followed. And don't ever expect an apology but you might be pleasantly surprised to see that if you keep going after a few years some of the people who have wronged you might no longer be in positions to wrong others.

Professionals need to be "culturally competent" and aware of people's "micro-ethnicity" so that...

It is a very, very ethnically diverse borough and a huge range of nationalities and religions and degrees of assimilation to British culture. You know, from people who have really just, just arrived and who don't speak the language to, to people who are ethnic in outer appearance but who've been born and bred in this country and who are, have kind of dual heritage but whose European-ness is probably more, more prominent to an impartial observer than, than their foreign-ness but nonetheless within the mental health system it's their foreign-ness which is emphasised because it is their foreign-ness which is considered to, to shape their, their diagnosis and, and . 

I think we've said this before that there is this curious belief that, that, you know, that there are many different kinds of schizophrenia and each ethnicity has its own schizophrenia and that you can't necessarily assume that, that black schizophrenia or Jewish schizophrenia or Dutch schizophrenia is, is going to have the same presentation and the same prognosis and, and, you know, that for, one has to constantly be very culturally competent and make allowances, refine one's, one's approach and I, I'm not persuaded that you can classify people in this way. I think we all have a kind of micro-ethnicity that you acquire a knowledge of through getting to know us but, you know, the form you fill in when you go in hospital is not really giving you that picture and, and if, if you determine somebody's mental identity and pathological mental identity, on that, that basis you're going to fall back on stereotypes. And so in fact very, very old fashioned stereotypes that don't belong in the 21st century.

Michael was distressed when the antipsychotic he was forced to take interfered with swallowing...

I think the other thing that, that I kind of think, experience of choking and swallowing from being given antipsychotic drugs. And I don't know if this is a recognised side-effect but this, I mean I have ongoing swallowing problems anyway and I have to take drugs to prevent acid reflux. And that the feelings seem to be like translate to chest tightening and breathing problems as well. And I find this, you know, very, very disturbing aspect of, of antipsychotic use and it's interesting that it has this sense of suffocation and stifling. It could be seen as, as relating to the experience of, you know, stopping me telling my story and I have to tell you that it is physically difficult for me to communicate when I'm under the influence of drugs and it's really hard to say that that would apply if I was given the drugs purely by themselves without cocktails of other drugs and without having drugs for the swallowing problems withheld. So it's like many different problems but I mean some drug information leaflets are now warning that people with swallowing difficulties might be at special risks of side-effects from anti-psychotics.

 I really need to do some digging on the internet and see if there's some psycho-pharmacological research on this. Is it something that, that you've come across from other people? I mean because people in, in my mental health trust who've been at this hospital have said that they noticed that whilst they, they were being treated there and being given injections and other antipsychotic routes, routes to administer other psychiatric medication that they noticed breathing and, problems and, not so much the swallowing and choking but the breathing problems.

People with mental health problems should be considered vulnerable in terms of their physical...

And as far as I'm concerned the people should, should be considered as at-risk as vulnerable adults for their mental health, for their physical safety if they're in the community and they're surrounded by people who seem them as, as vulnerable adults who they can hit on and sexually abuse. And I think they should be vulnerable in the sense that they are at, at risk of serious medical neglect and if, if such people die as, as this young woman of 34 died, there should be the same process of investigation that takes place where there's a Serious Untoward Incident that, that causes a suicide.

I mean, what is so important about suicide? What is so important that we only investigate those forms of, of death? Are we telling people that they have to commit suicide in order to make a statement and get an investigation because I've heard people, patients saying that. And I mean I've heard patients saying that they'd be better off in prison so I'm only asking that, that they commit crime, are we saying that, that mental health service is so bad that it's provoking an escalation in symptoms?

OK? I mean that's something just very fresh in my memory and it, the point that I wanted to make to, point, although I knew relatively little about her, I only spoke to her a few times, she did mention to me that she was a fellow victim of institutional sexual abuse. And I think that once, once you've got that experience that, that there will be all these counter-measures taken to prevent you, your injuries being treated and therefore investigated and therefore reported to the police. And this will lead to your long term exclusion from health care. And that in turn means that you become potentially a typhoid Mary, that you can develop all sorts of infectious diseases that won't be investigated. And that was perfectly OK when the old institutions like bleep, bleep house that were, where people could just be put away and, if you like, quarantined in those old asylums. But, I mean, you now have young nubile people who are, you know, potentially sexually available like anyone else but nobody knows whether they're being treated or not. OK.

Michael says he did not experience any hallucinations or delusions but professionals accused him...

So I mean you weren't having any hallucinations?

No.

Delusions?

Not that I'm aware of. I mean I think they could have argued that I was making accusations like I'm making accusations I guess now. And they wanted to punish me for making these accusations by saying that they're delusions. But I think, you know, that there have been criminal investigations and forensic investigations and so on and they back me up.

Right

And the proof that they back me up is that the people that I have been avoiding naming names are no longer working as doctors and psychiatrists and social workers and so on and in two cases they've been struck off.

He says that ethnicity influences diagnosis and in his view people have a "micro-ethnicity" and...

Right, Well. I mean the Scottish Mental Health Act, which was the one that the government was asked to incorporate into the new Mental Health Act and it refused to do, made it very clear that the same criteria for diagnosis should apply whatever a person's ethnic group happens to be. But that was refused by the English legislators and I think it's more or less accepted that mental illnesses present in different ways in different types because they, their presentation at least is socially shaped and that at least in some people's opinion there are many different kinds of schizophrenia, for example, and that Jewish schizophrenia might be different from Afro-Caribbean schizophrenia and British schizophrenia and therefore the criteria for diagnosis and the method of treatment might be different and that there is therefore a, an unspoken professional folklore, what I call ethnomethodology which, which tells people how to make up your mind about these people. These people and why they're different and why they special criteria have to be applied to diagnosing them and treating them and assessing them and their risk. And I suppose that' that as long as we have this very untransparent secretive code that we can, you know, we don't, we just don't know what is going on behind the scenes.

And, you know, there are medical anthropologists who try and, and produce value-free judgments about people but I don't think the work has been done unfortunately to interview lots of people from one ethnic group or another ethnic group and find out how their particular ethnicity shapes their presentation. Actually I suspect that it isn't down to ethnicity, it's very, very individual. And that, that everybody has a micro-ethnicity which is unique to them. And the only way you'd find out about this micro-ethnicity is by talking to people and getting accurate information from them and about them but there's no way that will happen whilst people are so dependent on received opinions about, you know, Jews having sex with their mothers.

 Personally I think that, that we would do better going back to first principles, actually, I don't know if I've said that phrase before not in this interview yet and, and, and starting off with a strict medical-legal definition and then as we get to know the person as, as an individual through observation, through acquaintance we add in the, the cultural dimension, that the social model should never be the first thing we lean on. That, that we should explore that and that we, we should I guess one of the purposes of the CPA process, I don't know if we mentioned that here, is that it should look at the patient's broad holistic identity which includes, you know, their physical health and it includes, you know, their relationships with the wider community and that includes that, that is their cultural identity partly, and that their religious identity which is part of a, social religious identity, we're not, I don't think we're, we should be interested in their, their relationship with God really. But that's not something you, you, you look at first of all. It's very presumptuous of you to do that. If you try and do that you're sure to jump to the wrong conclusions.

Michael believes drugs such as psycho-stimulants cause mental health problems, not social factors...

And I can say that I, you know, it's like a leitmotif in my treatment that I constantly pointed out that the people around me are using drugs and, and that includes the staff by the way. [laughs] And that is affecting their mood and their thought processes and their personalities and that if you would take that out, that out of the equation then some of them would probably be more or less well. But I'm told that is kind of stereotypical medical thinking that drugs can't do that because they're merely chemicals and what really causes mental illness is social factors. And the strange thing is that, that if you, if you criticise that view you are seen as very, very right wing because being a social model practitioner makes you very politically right on and on the side of angels and completely incapable of self-criticism. [Laughs] Which is a bit like being high on drugs but there you go. And by drugs I'm not talking about any old drug I'm specifically talking about psycho-stimulants'

I wanted to, to talk about non-compliance with medication and attitudes to medication because I would say that my own attitude is, is really diametrically opposite of the mainstream attitude that I've encountered from community mental health teams and I can tell you that I've been told it's an article of faith that, street drugs do not cause mental illness, even the most extreme of street drugs like, like angel dust. Let alone stimulants like Methcathinone, which is strictly speaking illegal. Although I don't think it's illegal to give it surreptitiously but these are seen as innocuous and legitimate forms of self-medication. And it's as though the whole idea of, of drug use not only cannabis use has been romanticised, that people are seen as, as entitled to make themselves crazy in order to live this Bohemian creative lifestyle. And, you know, that, that they're better off keeping themselves happy with drugs, particularly downers and cannabis and, and Phencyclidine will certainly come under the category of downers, although it can have a paradoxical effects of course but in theory they're down, downers. Because, you know, otherwise they could be out in, in the real world committing crimes and it's so much better that they're medicating themselves into, into psychiatric patient status.

 I think, you know, a) it's extremely questionable whether these people would be in the criminal justice system if they weren't in the mental health system, you know, says who? But in any case I, I don't see that, that the mental health system is intrinsically superior to the criminal justice system. And I would say, and it's not only me that says, that if you're struggling with a substance misuse problem you'd be better off in, in the criminal justice system. People say that their lives have been saved by being put in the criminal justice system being forced to come off the drugs and then given help to stay off. And I have to tell you that at the moment there's no, no plan to, to give that kind of care to, to people in my trust I mean maybe there's something in the pipeline but I don't know about it. But nothing to address the huge scale of the problem.

 My, my view is that on the contrary it's, it's an article of faith that, that drugs might not be responsible for all mental illness but where, where people with mental illness take drugs they greatly compound the problem and prevent recovery. And I think that other things being equal, people do recover more or less but the drugs stop them recovering.

Michael was keen to go to hospital and escape the abuse he was suffering in the community.

OK. Right. I was explaining to you that the social model seems to rely very heavily on certain popular stereotypes and that the popularity of these stereotypes is so compelling that where you have factual stories that contradict those stereotypes they get glossed over, that, that there's a sort of appeal of, of, of the story, of the good old story that is so clamorous that it drowns out, you know. So I mentioned that there are stories about incest with my mother and as far as I know in spite of the fact that both I and my mother have been treated with drugs in order to try and prevent us having sex together and that in both cases, you know, it was done without our consent. My mother as a psycho-geriatric, me as a person with severe mental impairment, I mean under guardianship or whatever. There's no truth in this, it's just a, you know, a popular Freudian stereotype about Jews. But on the other hand, it is true that, that there were sexual crimes involving other members of my family and these were going on right, right up to the time that I was in psychiatric, put in psychiatric hospital. And, you know, I was still suffering the consequences of drug assisted rape at the point when I was admitted to psychiatric hospital. And the reason I was so keen to be, to go into hospital, insisted on being re-housed and not just being returned, right, was because these issues were so ongoing. But these, like present day issues, were being obscured by fanciful stories about, about incest and homosexuality which were considered to be typical of my Jewishness.

Michael says staff were unable to speak English very well and that there was a "cultural gap"...

I think my borough and my mental health trust has so much problems because the social model training that they receive which downplays the medical model offers a very simplified, de-skilled version of nurse training, I can speak about that as somebody who's you know visited these nurses colleges and, you know, seen what the students are learning and what they're not learning and, and it's quite astonishing. And I think this almost culture gap between the, this is not being understood that there are a lot of people there who, whose first language is not English and they have very good written English skills and absolutely no spoken English skills. And therefore their ability to pass tests might be quite good but their ability to take in lectures is non-existent. You've come across that? Yeah? Fortunately not. 

But you could imagine what it would be like to have, have people like that to, and I'm not talking about people from, let's say the, the West Indies, or India, or Hong Kong who speak their own indigenous version of English which I would call, they're native English speakers, but they're not British native English speakers, right. I'm talking about people whose everyday language is a, a non-European language but when they come to school they read and write in English. 

And there is no attempt to recognise the cultural gap. So, of course, their version of the social model is a very, very alien one. And so when they counter patients who are more cultured and educated and who say, well actually you're not understanding me and you're not understanding other people and you're not understanding your own job, they react in, in this very aggressive way. Because it's like the patients are saying the emperor has no clothes. And you're taking away from them the competence in the very area that they could excel in, which is the medical area. And that could be an avenue to critical thinking and to all these, if I were, in charge of this I would make sure that everybody had a grounding in, in, in straight medical nursing, let's say two years of that and then did another two years of psychiatric nursing. But actually it's a completely separate stream.

Michael was admitted for observation but says there was no need to section him.

I was admitted to a locality mental health unit in the London of Walford [Laughter] and I at the time was admitted for observation. But actually yeah I was very pleased to be getting out of the place where I was living where I was subject to a kind of constant barrage of, of physical and verbal abuse and, and to me this was, you know, a welcome escape and it was, it didn't take much to persuade me to, to give me a break. And I was quite happy stay on in the hospital as a voluntary patient and so there was no need to section me. And there was certainly no need to surreptitiously section me. But I think it would have been impossible to stigmatise me in the way that I've stigmatised if I hadn't been section 3'd and kept in for six months without any appeal. And I think I would've been kept in much longer if there hadn't been an automatic review at that point, which would have required a panel to decide that I was genuinely so ill that I had to spend an indefinite period. And even though all this went on behind my back, I was told, you know, within a very brief, given very brief marching orders that, okay we've got to let you go.