Making A Difference Early On

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Making A Difference Early On

• Dr. Jan Wallcraft

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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

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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 Caplans 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.

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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.
• Caplan was 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.

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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.

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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.

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Michael

• Michael, a young Irish man with a visual
  disability, was devastated by his mothers 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 friends house for Easter
  that year and ended up taking an overdose and
  being admitted to hospital.
• Id been getting more and more distressed and
  trying to hold it inin 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 (267)

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Michael - emergency treatment

• I rememberwaiting in casualtyit wasnt long,
  they were er pumping my stomach (p) and I I
  wanted my friend to stay with me all the time
  but he wasnt allowed (p) while that was going on
  and I remember, (p) all the horrible feeling you
  get when um, when they do that youre awake,
  youve got to keep it water down while they get
  it all outits just horrible, I couldnt believe
  it could be that painful

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Michael on the acute ward

• they put me in a bed and I was crying and stuffI
  remember this nurse saying If you cant make it
  with your life, um, dont bother us with it and
  everybodys got to carry on sometime, some
  wayI said I cant cope but she said oh weve
  all got to cope, and then just went awaythat
  was in the early morning and I dont think I saw
  a nurse all dayWhen 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 Id finished that phone call I remember
  crying buckets and buckets of tears and nobody,
  absolutely nobody coming to see how I was

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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 werehe said,
  so, youre hearing voices then and I said, no,
  I didnt say thathe said have you always been
  sensitive?

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The diagnostic interview turning to long-term
patienthood

• I said, I dont know, I spose so he said, and
  what about, your love life, have you got a
  girlfriend?I said, no, I I m gay, I thinkhe
  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 dont know what the hell youre talking
  about, and hows this helping me? I said, me
  mothers died, Im lonely, I cant cope and
  youre asking me how I behave in bed I said ,
  Ive never even been to bed with anybody.

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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 Im 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

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Making a crisis worse

• Michaels 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
  Michaels immediate need for acceptance and
  understanding from the doctor himself.
• The doctors questions about Michaels 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 didnt take all the sleeping tablets because I
  realised, in the middle of it that I was, well I
  thought I was going to dieI was so confused
  because I didnt 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.

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Sarah who took an overdose

• I got away from my parents who I never (p) felt
  understood meI was quite naive because all the
  problems followed me, and they seem to have got
  worse (Sarah, 1916)

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Sarah on the emergency ward

• It was just horrendous, in terms of the
  treatmentI went with a friend to A E, and,
  nobody, would really talk to me, none of the
  staff would really talk to meor 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 didnt see him again the nurses would look,
  um, not impressed with what Id done their
  expressions on their face showed it - they didnt
  say anythingthey would give me the old potions,
  a mix to make me throw uptheyd look at me as if
  this is like a punishment

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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 (1987). 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 wayheartless and callous wayI
  suppose I did expect a lot more from them, but it
  was just like a conveyor belt, we just want
  topump all the rubbish out of you but well
  still make assumptions about you at the end of
  the dayand when I leftI felt really emptyId
  lost a lot of emotion and feelings, I just felt
  theyd taken all that away as well, its hard to
  explain, its, everythings gone

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Taking everything away

• Sarahs experience, like Michaels, 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.

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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, thats really the
  root of my problemId been planning this for a
  long time, like years, Id dabbled in the idea of
  trying to kill myself (Lucy - young woman)

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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)

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Evidence of trauma

• There was the childhoodI was abused, off me dad,
  and he damaged one of me testiclesand I went
  away to boarding schoolslocked away in boarding
  schoolsthey was very cruel to me at one of the
  schoolsthey used to tie me to beds and
  that.later the school got closed downboarding
  school for backward people or something (Donald
  man with learning disabilities)
• I couldnt accept it bereavement because I
  never had any brothers and sistersmy mother
  died at 30 crossing the road (Martin -
  middle-class man who broke down when his wife
  died)

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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 its easy to think
  youve forgotten about it, but its still like
  there in the back of your mind Ive tried
  suicide ten times since the age of 13 and I've
  actually done self-harm (Philip, young gay man)
• Id just come out of an orphanage, to be abused
  by me dadwhen you told people about it, nobody
  believed you, in the 60sI told the priests, cos
  thats all I know of then, and I got a
  hidingfrom the priest, he slapped me (Irish
  woman)

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Evidence of trauma

• I didnt learn all the social skills and how to
  be with people and how to interactbecause I was
  locked up as a youngster, Im suffering from sort
  of low self esteem now, and my parents are very
  good at making me feel inadequate, because of the
  way theyve been brought upI realise that, so I
  know why they do what they do, but I cant
  forgive them (Bina, young Asian woman)
• Well, when I was 16 I started feeling hellish
  anxiety. My fatherd 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 leftfather
  started chucking me out of the house (Roger,
  white man)

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Difficulties in finding help

• Philip describes a reluctance to ask his mother
  for help
• my mums already had a breakdown previously,
  before I had mine, somaybe I didnt want to
  upset her any moreI didnt 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.

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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.

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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

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Day hospital

• Sarah became a day patient at the psychiatric
  hospital. This treatment, she considers in
  retrospect, made things worse
• unfortunately, it didnt help, all I got from the
  psychiatrist was, lots of drugsAntidepressants,
  Amitryptiline and sleeping tablets,
  tranquillisers, just one big cocktail which
  seemed to turn me into a bit of a zombie
• I just couldnt think or feel or anything,
  everything just seemed to, be detached from,
  everythingmy partner seeing me in vulnerable
  powerless state he could abuse me in any way he
  wanted tobecause of the drugs, and because of
  the way the psychiatric system deals.I felt even
  more disempowered, I felt I couldnt think for
  myself

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Going to the emergency clinic

• Philip
• I went to the Accident and Emergency and asked to
  see the Emergency Psychiatristhe kept saying
  are you hearing voicesit was really getting to
  me, Im not hearing voices, Im depressed, cant
  you understand that? what do you have to do, to
  make these people see thattheres mental health
  thats not just hearing voices and schizophrenia,
  and theres so many other different forms of
  mental health

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Doctors and sexuality

• Philips doctor was insistent that Philips
  problems were related to his homosexuality and
  tried to convince him to go straight.
• I told the doctor Id been raped at the age of
  13and now hes saying, Im gay because I got
  raped..so I was trying to like, say look, my
  sexualitys 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 cant seem to get the help you want without
  somebody else criticising youyou get more and
  more frustrated and more and more depressed, cos
  youre bottling it all upits like being in a
  corner, like as if people were literally
  strangling you, not a good condition for me to
  get into

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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 sessionstraight 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

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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 cant tell people not to do
  or to do anything, and what I was implying was
  that she didnt careshe 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 humans lifeI was being
  nasty because I was on a death path, but even so
  it must have been obvious that I wasnt a really
  horrible person inside. When people are angry
  its usually because they are really really sad,
  everyone knows that, so why dont people act upon
  it and find out why people are feeling sad?

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Lucys 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.

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Lucys 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 Id have jumped then I would have been
  deadThey took me back and they didnt do
  anything
• .so the next day, I dressed up, in my best
  clothesand 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 plasterI just couldnt
  believe it , I was so angrythat time I think was
  the most time that Ive ever meant it, cos I was
  so, off my head
• Lucys 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

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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 dont wanna be doing anything like that,
  Lucy, you dont wanna get sectioned, it wouldnt
  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.
  Ive got a right to be sectioned. I am
  desperately saying to them Im 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

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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
  werent enough. Or they werent what I needed at
  that timeI 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.

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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 youre 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 ownI had 24 hr nurse laugh obviously
  they were getting worried by that timethey
  hadnt taken me seriously when Id 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 medicationI gradually got better and I
  think that was to do with being in a normal
  environment, partlybeing in a general ward,
  with, yknow, normal peoplethere was more
  activity on that wardthere was a routine, and
  the nurses..spoke to you more

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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

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How far did hospital meet peoples 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 peoples 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.

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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.

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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, its other things (Joseph)
• I have tried very hard to actually do something,
  thats why I get aggressive with people in
  authority, or whatever, because theyve 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 dont really have any idea (Bina)
• I wanted to get back to work.I dont want to go
  into hospital any more.I prefer to become
  a.respected citizen again and get on with my
  life (Mary)

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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 peoples 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.