Making A Difference Early On

1. Making A Difference Early On Dr. Jan Wallcraft

2. Alternative to biomedical discourse • I began my thesis seeking an alternative to biomedical discourse to look at how people go into a crisis or breakdown in the first place – often when young – and because they are unable to cope they are forced to seek help – or others seek help for them. • This was my own experience at age 22 when I was admitted to psychiatric hospital after a breakdown. I spent 6 months in hospital, and it was enough to ensure I never wanted to go back, and somehow I managed to avoid hospitalisation ever since • Later, I met many people, through the service user /survivor movement, who had got into psychiatry in a similar way, but who had been caught up in it for far longer. I had struggled to cope in my life but I realised I was probably fortunate in managing not to have a long-term involvement in the mental health system

3. Caplan theory • In my thesis I wanted to set aside the assumption that psychiatric hospitals and diagnoses were inevitable, and pose the question – what was going on for people when they found themselves in crisis, how did they experience psychiatric intervention, and what happened during and after the crisis? I looked for an analytic framework which was not medical, which did not assume people had been ‘ill’ or ‘diseased’. I used Gerald Caplan’s crisis theory as a model. It is a theory of systems, and looks at how people respond to their internal and external environment, how mostly we cope with life by trial and error, learning and developing, but sometimes things can get beyond our control, and our normal coping mechanisms become overwhelmed. We seek help, with ever greater urgency, until at some point we can no longer cope at all, and that is when institutions step in and take over.

4. Turning points to and from patienthood • Caplan created his crisis model to show how there are turning points in this process, where people move sharply towards greater disintegration or towards positive outcomes, • If communities were more aware of the process of psychological crisis, suitable help could be provided at the right times, not at all necessarily by doctors, perhaps better in fact not, ordinary, non-medical professionals who encountered a person needing help and recognised the signs of life-crisis. • If societies had the confidence to intervene, in many cases, the person in crisis might never need to become a mental patient. • Caplanwas a psychiatrist, but he wanted communities to learn the mental health skills they needed to maintain people in the community rather than handing them over to psychiatry, which he believed often caused deterioration and institutionalisation, and revolving door patients.

5. Crisis 4 phase model • CAPLAN CRISIS MODEL • Phase 1: Initial rise in tension from the impact of the stimulus calls forth habitual problem-solving responses. • Phase 2. Lack of success and continuation of the stimulus leads to a further rise in tension, with feelings of upset, helplessness and ineffectuality. • Phase 3. Tension rises past a third threshold, stimulating the individual to mobilize internal and external resources, reserves of strength and emergency problem-solving mechanisms. • Phase 4. If the problem cannot be solved satisfactorily nor avoided, the tension mounts beyond a further threshold or increases over time to a breaking point. Major disorganization of the individual then occurs with drastic results.

6. My thesis questions • I asked 26 people about their first experience of a crisis which had led to hospitalisation. • I sought people whose first experience was in the last 5-10 years. • A number of them described breakdowns when they were young.

7. Michael • Michael, a young Irish man with a visual disability, was devastated by his mother’s death during his ‘A’ level year, and became steadily more depressed during his first year at University. He had also become aware that he was gay and was afraid to tell his parents about this. He stayed at a friend’s house for Easter that year and ended up taking an overdose and being admitted to hospital. • I’d been getting more and more distressed and trying to hold it in…in the middle of the night I was pacing up and down and, feeling very very wound up, feeling that I couldn't actually handle it any more..I found several tablets, um and I sort of took the bottle (26:7)

8. Michael - emergency treatment • I remember…waiting in casualty…it wasn’t long, they were er pumping my stomach (p) and I I wanted [my friend] to stay with me all the time but he wasn’t allowed (p) while that was going on and I remember, (p) all the horrible …feeling you get when um, when they do that… you’re awake, you’ve got to keep it [water] down while they get it all out…its just horrible, I couldn’t believe [it] could be that painful

9. Michael on the acute ward • they put me in a bed and I was crying and stuff…I remember this nurse saying ‘If you can’t make it with your life, um, don’t bother us with it’ and ‘everybody’s got to carry on sometime, some way’…I said ‘I cant cope’ but she said ‘oh we’ve all got to cope’, and then just went away…that was in the early morning and I don’t think I saw a nurse all day…When I did finally see one and asked what was going to happen they said, ‘oh well, the chief psychiatrist will be here to see you shortly’ • Michael spoke to one of his sisters on the phone during this stay: • When I’d finished that [phone call] I remember crying buckets and buckets of tears and nobody, absolutely nobody coming to see how I was

10. The diagnostic interview – turning point to patienthood • Eventually Michael saw a psychiatrist • he said to me, ‘ do you believe that people are talking about you’ and I said ‘yeah, I do’ …I thought that people were laughing at me in the street, which, it turns out they were…he said, ‘so, you’re hearing voices then’ and I said, ‘no, I didn’t say that’…he said ‘have you always been sensitive?’…

11. The diagnostic interview –turning to long-term patienthood • I said, ‘I don’t know, I spose so’ …he said, ’and what about, your love life, have you got a girlfriend?’…I said, ‘no, I Im gay, I think’…he said ‘oh well, are you the active or the passive partner?’ …I said. ‘What do you mean exactly?’, because I was actually a virgin then, about 18 • He said ‘well do behave like a man or a woman in bed’ [adopts abrupt tone] …well, I lost it then I said ‘I don’t’ know what the hell you’re talking about, and how’s this helping me?’ I said, ‘me mother’s died, I’m lonely, I can’t cope and you’re asking me how I behave in bed’ I said , ‘I’ve never even been to bed with anybody.’

12. The diagnostic interview – turning to long term patienthood • He said, ‘well (p) I m going to give you these tablets and, I want you to take them and I m going to refer you to a clinical psychologist, and I’m going to send a CPN [community psychiatric nurse] to see you’. • I got these tablets and I remember these, was Melleril, Ludiomil and Temazepam. • Anyway I got them on the Friday and on the Saturday I took them all with a nice bottle of wine

13. Making a crisis worse • Michael’s treatment by professionals was experienced by him as insensitive and dismissive, particularly in the response to his sexuality issues. He tried to spell out what he saw as his problem, which was related to his loss of his mother and his loneliness at college. • The doctor did offer a clinical psychologist and a CPN, but perhaps this did not substitute for Michael’s immediate need for acceptance and understanding from the doctor himself. • The doctor’s questions about Michael’s sexual behaviour seemed completely unnecessary and inappropriate to him. The overdose may have been partly an angry response to this treatment. There is a clue to this in his next statement: • I didn’t take all the sleeping tablets because I realised, in the middle of it that I was, well I thought I was going to die…I was so confused because I didn’t know whether I wanted to die or not. • If Michael was taking the overdose partly out of anger, this might account for his confusion about whether he really wanted to die. He may have needed to show the doctor how hurtful and unhelpful his behaviour had been.

14. Sarah – who took an overdose • I got away from my parents who I never (p) felt understood me…I was quite naive because all the problems followed me, and … they seem to have got worse (Sarah, 19:16)

15. Sarah on the emergency ward • It was just horrendous, in terms of the treatment…I went with a friend to A & E, and, nobody, would really talk to me, none of the staff would really talk to me…or if they did they would ask me rather….philosophical questions [such as] ‘do you want to die?’…I said ‘well, you know, its not as simple as that [laugh] I mean, how long have you got, I could discuss it with you’ • I actually said that to one young bloke and he just looked terrified and literally shot off and I didn’t see him again… [the nurses] would look, um, not impressed with what I’d done …their expressions on their face showed it - they didn’t say anything…they would give me the old potions, a mix to make me throw up…they’d look at me as if …this is like a punishment

16. Sarah and the psychiatrist • Sarah saw the psychiatrist the day after her admission, and was asked why she had taken an overdose, and when she explained, he simply told her not to do it again and referred her back to her GP. She also saw a social worker who said ‘you look like a strong lass…..things should work itself out’, which she says she found ‘so patronising and unhelpful’ (19:87). Sarah explains what she had hoped for: • I suppose I wanted someone to talk to, to listen to me, and not to be treated in these….in some ways barbaric way…heartless and callous way…I suppose I did expect a lot more from them, but it was just like a conveyor belt, we just want to…pump all the rubbish out of you …but we’ll still make assumptions about you at the end of the day…and when I left…I felt really empty…I’d lost a lot of emotion and feelings, I just felt they’d taken all that away as well, its hard to explain, its, everything’s gone

17. Taking everything away • Sarah’s experience, like Michael’s, was of basic medical care following her attempted suicide, coupled with critical and dismissive attitudes from staff which she found distressing. She was asked questions, but in a manner that suggested that the questioner was not willing to take the time to listen and understand without judgement. • I interpret her description of having had her emotions taken away along with the overdose as a statement that she had needed the opportunity to feel and express her pain, and had been denied this because of the cold and impersonal treatment she had received. This had left her feeling that the opportunity of the crisis had been wasted.

18. Evidence of trauma as an underlying cause • Eight of the interviewees spoke about early abuse or trauma that they linked to their crisis: • It started off I think very, very early in my childhood I was, I suppose, physically abused by my parents then, sexually abused by a friend of the family (Mark - young man) • my father had killed himself, that’s really the root of my problem…I’d been planning this for a long time, like years, I’d dabbled in the idea of trying to kill myself (Lucy - young woman)

19. Evidence of trauma • I was abused from the start, I was physically abused by my father, not sexually as far as I know, but he, um. He beat us up, yeah, he was given to uncontrollable rages and he would just smack us around and he had, we were powerless and he had all the authority, and he had the authority to smash us up any time he wanted, and for years any time anybody made a movement (Alice - upper class woman)

20. Evidence of trauma • There was the childhood…I was abused, off me dad, and he damaged one of me testicles…and I went away to boarding schools…locked away in boarding schools…they was very cruel to me at one of the schools…they used to tie me to beds and that….[later] the school got closed down…boarding school for backward people or something (Donald – man with learning disabilities) • I couldn’t accept it [bereavement] because I never had any brothers and sisters…my mother …died at 30 crossing the road(Martin - middle-class man who broke down when his wife died)

21. Evidence of trauma • some of my mental health stuff goes back to my childhood, which my dad was an alcoholic, I actually watched my dad beat my mum up …when you try and talk about it hurts …it’s easy to think you’ve forgotten about it, but it’s still like there in the back of your mind… I’ve tried suicide ten times since the age of 13 and I've actually done self-harm (Philip, young gay man) • I’d just come out of an orphanage, to be abused by me dad…when you told people about it, nobody believed you, in the 60s…I told the priests, cos that’s all I know of then, and I got a hiding…from the priest, he slapped me(Irish woman)

22. Evidence of trauma • I didn’t learn all the social skills and how to be with people and how to interact…because I was locked up as a youngster, I’m suffering from sort of low self esteem now, and my parents are very good at making me feel inadequate, because of the way they’ve been brought up…I realise that, so I know why they do what they do, but I can’t forgive them(Bina, young Asian woman) • Well, when I was 16 I started feeling hellish anxiety. My father’d been going on for a few years he was going to chuck me out when I was 16. … so when I turned 16 I got all this anxiety stuff… my mother packed her bags and left…father started chucking me out of the house (Roger, white man)

23. Difficulties in finding help • Philip describes a reluctance to ask his mother for help • my mum’s already had a breakdown previously, before I had mine, so…maybe I didn’t want to upset her any more…I didn’t want to depress her and make her worse, so I just bottled it all up for a whole year • Lucy mentioned an ultimately unsuccessful search for help from friends: • I suppose it was a build up of complete anger that no one was helping me and I was going to different friends trying to get help and they had no understanding.

24. Help-seeking in crisis • The problems experienced by people seeking help from friends were similar to the problems in seeking help from family • However willing to help the friends were, the person going into crisis found problems of communicating the need for help, or perhaps their needs were too great. • Perhaps during the crisis, the person needed to talk in a way with which they and their friends were unfamiliar. • For many, the next step was to seek professional help from their family doctor or other community services.

25. Family doctors • People had varying relationships with their GPs, but the consistent factor is that GPs seemed to have little to offer beyond medication and referral to a psychiatrist. • This does not seem to have coincided with what the interviewees felt they wanted and needed at this stage, though the evidence suggests they may not have been clear about what they were asking for. • Medication was not found helpful and was considered to have contributed to the worsening crisis in some cases. • Some of the interviewees were clear that they wanted to be listened to or given therapy or social support of some kind

26. Day hospital • Sarah became a day patient at the psychiatric hospital. This treatment, she considers in retrospect, made things worse • unfortunately, it didn’t help, all I got from the psychiatrist was, lots of drugs…Antidepressants, Amitryptiline and sleeping tablets, tranquillisers, just one big cocktail which seemed to turn me into a bit of a zombie… • I just couldn’t think or feel or anything, everything just seemed to, be detached from, everything…[my partner] seeing me in vulnerable powerless state he could abuse me in any way he wanted to…because of the drugs, and because of the way the psychiatric system deals….I felt even more disempowered, I felt I couldn’t think for myself

27. Going to the emergency clinic • Philip • I went to the Accident and Emergency and asked to see the Emergency Psychiatrist…he kept saying ‘are you hearing voices’…it was really getting to me, ‘I’m not hearing voices, I’m depressed, can’t you understand that?’ what do you have to do, to make these people see that…there’s mental health that’s not just hearing voices and schizophrenia, and there’s so many other different forms of mental health

28. Doctors and sexuality • Philip’s doctor was insistent that Philip’s problems were related to his homosexuality and tried to convince him to ‘go straight’. • I told the doctor I’d been raped at the age of 13…and now he’s saying, I’m gay because I got raped…..so I was trying to like, say ‘look, my sexuality’s got nothing to do with what happened there, in that moment of time • This made matters worse, confirming his experience that people would not really listen to him and respect his beliefs and his sexuality: • You can’t seem to get the help you want without somebody else criticising you…you get more and more frustrated and more and more depressed, cos you’re bottling it all up…its like being in a corner, like as if people were literally strangling you, not a good condition for me to get into

29. Lucy went to the college counselor • I….was really desperate and I went to see the student counsellor there… • I said to her, [aggressive tone] yknow, ‘you can't tell me not to kill myself can you cos that's not your job you're not allowed to say things like that are you?’ • …I wanted someone to care, but not that it was really her, but I was so desperate that I thought it could be her…. • I said to her, well I'm gonna kill myself, and that was the end of the session…straight after that I bought some razor blades • the next morning…. I decided that I was gonna kill myself, and I spent approximately 2 hours cutting my wrists

30. Lucy – second interview • I considered that Lucy was testing the therapist by her verbal challenge, and put this to her at my second meeting with her. She agreed: • I said to her ‘you are not going to tell me not to, if I say I am going to kill myself. You are a counsellor, and you can’t tell people not to do or to do anything’, and what I was implying was that she didn’t care…she was crap, I mean universities are notorious for people killing themselves and I was practically asking her to intervene without getting down on my hands and knees and I was also throwing it in her face and I was being manipulative, but if she had cared a bit more about another human’s life…I was being nasty because I was on a death path, but even so it must have been obvious that I wasn’t a really horrible person inside. When people are angry it’s usually because they are really really sad, everyone knows that, so why don’t people act upon it and find out why people are feeling sad?

31. Lucy’s challenge • The point she made about her challenging behaviour to the therapist was a general one that might apply to a number of the interviewees. It helps to explain why people often sought help but were unable to communicate the problem in a way that others could easily respond to, and why people are not always able to use help that is offered. Lucy wanted help from someone who was more mature, more knowledgeable and stronger than her. She wanted someone who could see the real person inside, which she was unable to show.

32. Lucy’s crisis nearly ended in death • I went up to the top of the roof, of the hospital… and this porter came and got me down and if I’d have jumped then I would have been dead…They took me back and they didn’t do anything • ….so the next day, I dressed up, in my best clothes…and I ran out of the hospital, ran up a fire escape and jumped, from the 5th floor… • I was taken to intensive care, and I woke up, and my whole body was in a plaster…I just couldn’t believe it , I was so angry…that time I think was the most time that I’ve ever meant it, cos I was so, off my head • Lucy’s determination to jump from the hospital roof seems like an increasingly desperate attempt to be taken seriously even if this was only to happen after her death

33. Safety in hospital? • When Lucy had been brought back down from the roof the first time a nurse spoke to her in a sarcastic manner: • ‘You don’t wanna be doing anything like that, Lucy, you don’t wanna get sectioned, it wouldn’t be good for your career’ • I asked her at the second interview if this comment had had an effect on her and she said: • yes she was **** *horrible. and it was like it was blackmail. They should have sectioned me. I’ve got a right to be sectioned. I am desperately saying to them I’m ***** wanting to kill myself. I am 21. Had I been 31 it might have been different but at the age of 21 everybody's got the right to get a bit of support

34. Death and rebirth • She believes that she should have been sectioned at that time for her own safety, and that she needed medication: • ‘as a mental and emotional pain killer …I needed professional care. my friends and my family weren’t enough. Or they weren’t what I needed at that time…I was immature. I wanted to be a baby again. I wanted to be reborn. I think that was part of my thing about suicide, it was trying to rebirth myself. I felt a sense of relief after I cut my wrist. because I thought then they were going to do something’ • For Lucy during her crisis period, death seems to have been preferable to being ignored.

35. Psychiatric ward to orthopaedic • Lucy, miraculously survived her jump from roof and was taken to intensive care: • I was ….given loads of morphine and that was great, yknow, when you’re feeling shit, I mean morphine does make you feel good [laugh]… • then they took me down to the orthopaedic ward after about eleven days, and um, I was in a room on my own…I had 24 hr nurse [laugh] obviously they were getting worried by that time…they hadn’t taken me seriously when I’d sort of said to them before that I felt really shit and I felt like killing myself and stuff… • I got a different psychiatrist, and they gave me some medication…I gradually got better and I think that was to do with being in a normal environment, partly…being in a general ward, with, yknow, normal people…there was more activity on that ward…there was a routine, and the nurses..spoke to you more…

36. Seeking professional help • Many of the interviewees had turned to professionals hoping to find knowledgeable and skilled help, based on good listening and genuine caring. • It may be that people need one-way help during a crisis which is free of the backlog of tensions that is common with family and friends. • The help people sought was rarely available. • The failure of professionals to understand and provide empathic and appropriate help, and the ill effects of medication appear to have provided the final turning point into crisis for a large number of the interviewees

37. How far did hospital meet people’s needs in crisis? • I found that most people were seeking appropriate treatment for problems which they considered to be related mainly to psychosocial causes. • Hospital services in crisis were valued by a number of people, but it seemed that their view of what they needed was a place of refuge and asylum, with talking treatments offered, rather than to be sectioned and forced to take medication. • People valued those aspects of hospital that most closely matched their perceived wants and needs. • In most cases these needs were not fully met, with the response from psychiatrists and other hospital staff being primarily based on the discourse of psychopathology, which does not involve listening to and believing or respecting patients’ views.

38. How far did hospital meet people’s needs in crisis? • Some people experienced turning points towards long term patient-hood because of poor treatment within the medical model, while a small number experienced turning points towards recovery because of finding respectful listening coupled with practical support. • Some people did accept the discourse of psychopathology and believed they needed to continue taking medication because they had had a further crisis after discontinuing it.

39. What my research showed • This research offers confirmation and validation of psychosocial theories, including crisis theory and trauma theory, along with some evidence of psycho-spiritual aspects to crisis. • It adds substance to these theories by showing the of how crisis and crisis intervention is experienced, and why some interventions work better than others. • It also gives substance to critiques of the discourse of psychopathology from the psychosocial and from the self-advocacy perspectives, by showing exactly how and at what point people found themselves let down by professional treatment within the discourse.

40. What people said they needed • they keep saying ‘take this pill try this pill try this pill’ ….I keep saying ‘well its not about pills, it’s other things’ (Joseph) • I have tried very hard to actually do something, that’s why I get aggressive with people in authority, or whatever, because they’ve never given me a chance (Donald) • I think I needed a lot of confidence-raising, which I was not getting (Alice) • [we need] user sensitive people working rather than what we have in the health service at the moment, they don’t really have any idea (Bina) • I wanted to get back to work….I don’t want to go into hospital any more….I prefer to become a….respected citizen again and get on with my life (Mary)

41. Recovery • People found help for their recovery outside health and social services in terms of • increasing self-knowledge • learning to manage their problems • making their own choices about medication • mutual support • relationships with their friends and family • making their own choices about medication • finding enjoyable activities and work • exploring spirituality and culture • Recovery was more difficult if these factors were absent, in particular where people were isolated. • Lost relationships and current isolation led to feelings of anger, hate and violence in some people

42. Other research on alternatives • Strategies for Living user-led research found that people create their own coping strategies for on-going survival, crisis or life-saving, symptom management and healing. • What people find most helpful is acceptance, sharing experience and identity, emotional support, finding a reason for living, peace of mind and relaxation, taking control and having choices, security and safety, and pleasure or enjoyment in life. • Strategies for Living researchers recommended that mental health professionals, service providers and policy makers recognise the expertise that service users have to contribute to mental health, and work with them to look at how services can support people’s own strategies through Expert Patient programmes, self-management training and support, and more investment in healthy living, health education, health promotion and positive images of people living with mental health problems.

43. Healing Minds • Complementary and alternative therapies can be shown to work for people with mental health problems • Active therapies such as exercise, yoga and relaxation can reduce anxiety and depression and help people reduce medication • Massage helps people feel more positive about themselves, reduces stress and uplifts mood • Nutritional medicine/therapy can be effective in schizophrenia and depression, though more research is needed • Herbal medicine – some herbs can be effective for depression, anxiety and insomnia

44. Research on alternatives • I have argued strongly that there is a need for more research to be done on the types of treatment that service users want, including talking treatments, complementary therapies and self-management • The reasons this does not happen more are financial and political – governments do not want to offend the pharma industry, and rely on pharma to fund most psychiatric research

45. Healing Minds • Acupuncture – can be effective in schizophrenia but more research is needed. Some evidence for its value in depression. • Complementary therapies such as aromatherapy and reflexology work well alongside talking treatments, helping to open up feelings for exploration in therapy, or helping to calm a person down after an emotional session.