Alternatives to hospital for people in crisis

1. Alternatives to hospital for people in crisis Dr. Jan Wallcraft Survivor researcher and activist, England

2. Science and personal experience • There are two basic principles from which scientists and philosophers argue all knowledge is derived • Sense experience – direct contact with the environment • Innate knowledge or ability to form complex ideas • Whichever version we accept as predominant, the individual’s ability to make sense of their perceptions is central to the formation of all knowledge and science

3. Learning about the world • It is natural for children to discover and learn • But we are given little opportunity to find things out ourselves. Social and educational systems shape children’s thinking, teaching accepted wisdom, pre-formed ideas and officially authorised sets of facts • Our understanding of ourselves and others is shaped for us and we are taught what is normal for us to be, think and do and how we should behave • The knowledge-base of psychiatry is based on such sets of authorised facts. Judgements of rationality or madness developed within this system.

4. Losing my way • As a child I experienced a sense of loss and alienation. The magic of discovery was replaced with school text-books and homework, and playground realities of bullying. I barely coped, shutting down inside • As a young adult I went to teacher training college. I dreamed I could make things change • I could not change the education system and left college after 1 year, in deep depression • I attempted suicide and was taken to hospital, given ECT and medication. After 6 months I was out in the world again, still barely able to cope

5. Survival • ECT took away my aspirations to change the world - I survived but learned to stay out of hospital and keep quiet about my experiences • I worked in low paid temporary office jobs, married and had 2 children, but still struggled with very low self-esteem, anxiety and depression

6. Recovery through learning • 10 years after I left hospital I took a degree in Science, Technology and Society, where at last I had some encouragement to think outside the conceptual boxes of conventional knowledge – I experienced this as an enormous liberation

7. Exploring ‘madness’ • My recovery meant that my natural curiosity resurfaced, and I wanted to explore my own experience and understand it, as a starting point to making sense of the world, which had been denied me first time round • I wanted to know about ECT, what it is, how it works, why people are given it, and what they really experience, not what the text books say

8. Trying to make sense of madness and psychiatry • At college I read everything I could find about ECT • I discovered that basic conceptual disagreements mean we cannot easily talk about what works in psychiatry • There is no agreement what the problem is • Even if we agree that mental pain is unpleasant and undesirable, psychiatry is more concerned with categorising behaviour than understanding pain • There is even less consensus as to causes, so we cannot agree what changes should happen, or what outcome we seek from treatment • All research on madness is biased because of its chosen assumptions which may be overt or hidden

9. Madness as a scientific category • ‘Madness’ is too complex an idea to be a natural phenomenon or a basic sense experience like sleeping, waking, pain or hunger. • The idea of ‘madness’ has gathered around it a huge amount of language concepts, customs, laws and medical writings • It is impossible to experience madness or think about madness unencumbered by the heavy influence of this accumulated history

10. Deconstructing psychiatry • I could not find myself without going through the process of understanding what had happened to me in the psychiatric hospital • I studied how ECT works, and concluded it is a means of social control which is seen as scientific only because controlled trials have been done • I read about ECT trials: patients were never asked their stories, what they wanted, or followed up to see what happened in the longer term

11. Foucault and the discourse of psychopathology • Foucault’s (1971, 1972) deconstructed the discourse of psychopathology • He asks us to go back to the historical point before ‘madness’ became ‘mental illness’ - a radical shift in thinking which enabled the medical specialty of psychiatry to form and develop its sub-categories of mental disease • If we are able to set aside diagnostic hypotheses such as ‘schizophrenia’ and ‘manic depression’, we can try to examine our own, or others’ first experiences of a breakdown or crisis without prior assumptions

12. Story telling as a tool of discovery • Following Foucault, I tried to set aside the whole discourse of psychopathology as a set of assumptions, based on the political invalidation of people labelled as patients • Without the certainty of mental illness, what is left are personal accounts of experience • I believe that encouraging people to tell their stories is the best scientific tool available to make sense of personal experience

13. ‘Hard’ and ‘soft’ science • We are taught that there is ‘hard’ science, based on facts, numbers, established measurement scales and randomised controlled trials, or ‘soft’ (qualitative) science • My argument is that there are no basic facts of mental illness that can be measured as the original constructs are disputed and one major set of stakeholders – patients – were not involved in their creation

14. Surveying in-patients • The traditional way of finding out what patients thought about psychiatric treatment was the Patients’ Satisfaction Survey • A tick-box exercise with questions deemed to be sufficiently safe to be asked of psychiatric inpatients • Carried out by trainee psychologists, doctors or nurses who are unlikely to be seen as independent by the patients

15. In-patient survey 1989 • All patients from 7 psychiatric wards who had been in hospital for more than a week were asked to rate 10 different aspects of hospital care • Top of the list came the freedom to leave the ward, followed by visitors • Talking to doctors or nurses came next • Drug treatment was in fifth place • The authors comment that although the sample contained many ‘highly disturbed’ psychotic patients, the ability to confide in a member of staff was still regarded as rewarding... Drug treatment was judged on average to be only ‘quite helpful’. • McIntyre et al (1989)

16. Narratives of crisis and treatment • I have found that the language of breaking down, experiencing crisis, turning points and recovery is often more acceptable than ‘mental illness’ • In my PhD I used narrative accounts of people’s first experience of a crisis or breakdown that resulted in psychiatric intervention • I’ve also studied alternative crisis services which try to provide what people say they want when in a crisis

17. What people said they wanted in crisis • A centre where individual attention was available where there was some privacy • To be somewhere I could sleep, rest and be understood. • A place where people can go for a rest period and to talk about problems before it gets to the stage of going into hospital. • (Rogers et al)

18. Safety to express feelings • What I really need and especially needed when in crisis distress and feeling very much suicidal in the past, was a residential place of asylum safety where I could have 24-hour watch support. A scream anger room available with clay, bean bags and pillows and people available to be with/talk to • Mental Health Foundation 1997

19. A place of healing I remember clearly what I thought might exist, and what I desperately wanted to exist. I imagined I’d be passed on to a place where for a few days or weeks I could get away from the intolerable pressure of being alive. It would be quiet. There’d be a garden and perhaps you’d do some work and dig there or plant things. The people would be gentle and tolerant, and you’d slowly heal and evolve a life plan that might make sense. (Tomlinson 1996 p.5)

20. Surveys on patient’s views of hospital crisis care • There is little involvement of patients in their treatment during a crisis, with staff too busy or too convinced of the medical diagnosis to listen to the patient’s own version of their story • Though many patients consider they need to be in hospital and many value the respite from responsibility, acute care is generally not seen as a safe or therapeutic place by people in crisis • A Mind survey brought together the accounts of 340 people with recent experience of admission, who found it untherapeutic, depressing and frequently unsafe (Hunter 2000)

21. Lack of psychological/social support • While the majority of patients in first-time crisis have psychosocial problems (Hatfield et al 2000), most staff treating them do not have skills in addressing psychosocial needs (SNMAC 1999) • Psychological therapies and social skills training were rare or absent and creative activities were often run on an irregular, ad hoc basis(SCMH 1998)

22. Acute/Crisis Care doesn’t address trauma, abuse, underlying issues • Many patients argue that their underlying problems are not being addressed and that treatment has made them worse • (Rogers et al 1993, Rose et al 1993, Prior 1993 • Staffs in psychiatric emergency services rarely uncover the histories of trauma and interpersonal violence which patients have experienced • (Briere 1999) • When Bloom’s clinical team began asking patients to recount their life histories, over eighty percent told ‘horrific stories of trauma of all kinds, which occurred usually, but not always, in childhood.’ Bloom 1997, p.109).

23. Acute/crisis care and sexuality • Confused about my sexual orientation and suicidal, I voluntarily entered a mental hospital in England. Instead of being given the counselling I needed, together with a wealth of love, compassion and understanding I was promptly given about twelve treatments of ECT. I was also put on antidepressants and large doses of the major tranquilliser Largactil (chlorpromazine). • (Taylor 1996 p.63)

24. Women in crisis • The research on women in crisis has shown that there are particular issues for women on acute wards, such as safety and privacy • (SCMH 1998). • Where women-only wards or women’s crisis houses have been evaluated these show increased levels of satisfaction and are better able to address women’s social needs. (Kohen 1999, Killaspy et al 2000)

25. Acute care and medication • Medication is prescribed to a high proportion of patients in acute services (SCMH 1998) • Patients experience medication as given with insufficient information and as causing unpleasant side-effects (Rogers et al 1993, Goodwin et al 1999).

26. Service users’s views of acute care • Although I knew I needed help I didn’t receive the help I needed. Nurses didn’t want to talk (something you needed desperately). Forced to help in kitchen and canteen. Forced to play silly games hardly ever seeing psychiatrist. • I felt very much alone and frightened. The medical profession did not seem to realise how bad I felt and could not cope with it. There was no real communication as to MY NEEDS • Some of them wanted to be quite helpful but they didn’t know how to help me - they just know how to give pills and ECT, which wasn’t helpful. • (Rogers et al 1993 p. 62)

27. Admission to acute care (1) • It is clear to me that it is inconvenient to have to consider the integrity of the new admission too carefully during absorption into the psychiatric system. During admission, as at other times in the caring process, the system’s needs dominate the individual’s needs. (Campbell, 1996a, p.58)

28. Admission to acute care (2) • Typically, on admission to a psychiatric ward, you are interviewed by a doctor. Many people expect his to be an opportunity to tell all that is troubling them to an expert who will help. But much of the interview is wholly baffling. ‘Count backwards from 100 in sevens’. ‘Do you believe your thoughts are being controlled?’ There appears to be no space to say on your own terms and in your own words, just what are the difficulties that have reduced you to this situation. • (Rose, Campbell and Neeter, 1993, pp.320-321)

29. Seclusion in crisis • To me it is horrifying (literally) that at the deepest point of my distress I can be locked into a small room with only inanimate objects to relate to. Whatever the justification for its use, seclusion should be recognized as being innately damaging and steps taken to minimize its impact. Over the years, I have never received support or counselling after periods of seclusion. • (Campbell 1991 p.15)

30. Alternatives (1) Crisis cards, advance directives, joint crisis plans • The use of crisis cards was described by Survivors Speak Out in evidence to the UK Government Health Committee. The use of crisis cards or joint crisis plans was subsequently evaluated: • The collaborative development of a joint crisis plan with patients is a novel form of psychosocial intervention. • This preliminary evidence suggests that, in addition to the direct, practical effects on recognition of relapse and crisis management, a range of beneficial effects on psychological functioning and quality of life may emerge, mediated through improvements in understanding, perceptions of control, and acceptance of the illness and treatment.(Sutherby et al 1999 p.61)

31. Alternative crisis support • I managed a Crisis Programme which gave funding and development support to 7 community based, mostly service user-run crisis houses and crisis phone lines • 2 of the residential services were evaluated along with another community crisis house • Levels of service user satisfaction with these services were 80-100% • Mental Health Foundation/Sainsbury Centre for Mental Health(2002) Being there in a crisis

32. The Nile Centre for African-Caribbean people in crisis • Very homely • They let me be. There was no approval or disapproval, they provide the right environment for me to recover • It’s a home away from home, lots of support, 24-hrs, seven days a week. They listen to you and advise you and organise and get on with things

33. Anam Cara service user led crisis house • The house is beautiful • It’s a totally informal approach…they are there for people but it’s a hands-off approach, a good atmosphere all around… • The people, staff are really supportive, make me laugh. I love it here, having lots of chats. I like the garden. People are looking out for you. It has been brilliant

34. Holistic support at Anam Cara • I valued the practical help I received, trying to resolve problems, domestic situations, the opportunity to rest and eat • Could have a chat with staff about life and get advice. No need to drink, more relaxed now. I have people to talk to. It’s nice that someone knows where you are coming from • It has gone beyond all my expectations. I have benefited a lot from the Reiki healing, flower essences, I feel very close to the staff and volunteers, it has been very healing

35. Alternative therapies and coping skills

36. Highbury Grove crisis house • It is completely different compared to hospital. I was in hospital for seven months, the staff sit and read newspapers and dish medication, you are not allowed out . It really does not compare. You get your own life back [here], people help to pick up pieces • I was able to spend time talking to staff in private which was just what I wanted but not what I had received in past hospital stays. The approach at the crisis house was much more holistic and included help with practical problems – something users frequently ask for

37. Summary of crisis houses • Service users of the crisis houses expressed high levels of satisfaction with their experiences and made favourable comparisons with in-patient care • ‘The key issue was the nature and level of interaction with staff. Having someone to talk to in times of crisis is a relatively simple need which can be achieved through developing small, local crisis services founded on an ethos of humanity, respect and care’ (MHF 2002)

38. Service users’ experiences of crisis houses • One of the most important things about the crisis house was that I felt safe there, not just from myself but from other people as well. The physical environment felt safer than the hospital ward….people treated me very differently and the attitude they took towards my crisis began to enable me to see it differently too. I felt that people cared about what I was going through and really wanted to help me change the situation for myself.Mental Health Foundation/Sainsbury Centre for Mental Health(2002) Being there in a crisis

39. Service users’ quotes • I think prevention is better than cure but [other services] just ignore you….you’d have to have a rope round yourneck before they take notice. The Safe House has always been there for me • Some people, all they need is a talk, then they can go home. If this wasn’t here, they would probably end up in hospital when they don’t really need it, just need to get it off their chest and talk it over • I’ve got hope to get through this, and that I’m not going to be manic depressive for the rest of my life…I’ve broken the pattern of going around in a circle

40. Doing it ourselves

41. Professionals talking about the Nile Centre and Anam Cara • The Nile Centre has been effective in dealing with the crisis within the African Caribbean population • There is clear evidence of reduced hospital admissions for young black men • [Anam Cara] is extremely useful for clients who have developed a lasting dependency on statutory services. It has made those type of people develop, which needed to be addressed (In-patient manager) • [Anam Cara] has changed lives in ways you can’t find in a set of medical notes----[and] it has had a major impact on my team. I have seen significant changes in my staff who have been in the service years (Home Treatment Team manager)

42. The power of stories to heal • Expression of negative feelings regarding an upsetting experience may result in cognitive changes wherein the speaker forms a logical and increasingly coherent narrative about his or her trauma and experiences. This sorting out of trauma-related material into a more structured narrative, in turn, may reduce distress by providing a sense of understanding of what occurred and its meaning for the individual (Briere 1999, pp.48-49)

43. Narrative analysis looks for new meanings and connections • Individuals facing the biographic disruption of chronic illness reconstruct a coherent self in narratives • Riessman 1993 p.3 • ‘Narrative analysis seeks to uncover the multiple meanings that reflect the connections between an individual’s life and problems and public, historical, social structures’. • Lempert (1994)

44. Stories, not numbers, create change • Encouraging the telling and dissemination of the life-stories of mental patients could be an important means of challenging stigma. • Plummer (1995) explored the social importance of encouraging the telling of stories which people have previously been unable to tell due to social stigma and taboo • He argues that as previously unheard stories are heard and accepted, other similar stories may be enabled to emerge, and that over time new understandings of the phenomena described in the stories can be socially negotiated

45. Personal narratives

46. Sharing stories can change the world • By telling our stories, we are creating new shared understandings of mental distress and a groundswell for a change in the knowledge systems that underpin current services • People have stated that they need safety, respect, support, practical help and good listening or space to work through the problems in their lives. When this is provided, it works. People begin to recover.

47. Storytelling is how culture is shared

48. Sharing stories can create new realities If enough of us get to share our stories with a wider public, the current system of knowledge about mental illness will be shown to be irrelevant and in need of drastic revision It isn’t rocket science, but if the simple recovery needs people express were prioritised in research about mental illness, it would completely challenge what is ‘known’ about diagnoses and treatments If enough of us get to share our stories with a wider public, the current system of knowledge about mental illness will be shown to be irrelevant and in need of drastic revision

49. References • Bloom, S. (1997) Creating Sanctuary: Towards the evolution of sane societies, New York: Routledge. • Briere J. (1999) Psychological Trauma and the Psychiatric Emergency Service; New Developments in Emergency Psychiatry, New Directions for Mental Health Services 82, 43-51 • Campbell, P. (1991)In Times of Crisis,OpenMind 52, 15. • Campbell P (1996a) Challenging Loss of Power, in J. Read and J. Reynolds (eds.) • Foucault, M. (1971) Madness and Civilisation, London: Routledge. • Foucault, M.(1972) Archaeology of Knowledge, London: Routledge. • Hunter, M. (2000) Services need user input. Community Care, Nov 16-22.pp12 • Killaspy, H., Dalton, J., McNicholas, S. and Johnson, S.(2000) Drayton Park, an alternative to hospital admission for women in acute mental health crisis, Psychiatric Bulletin 24 (3) March 101-104. • Kohen, D (1999) Specialised in-patient psychiatric service for women, Psychiatric Bulletin 23 (1) January 31-33. • Lempert, L.B. (1994) A Narrative Analysis of Abuse: Connecting the Personal, the Rhetorical, and the Structural, Journal of Contemporary Ethnography, 22 (4) January 411-441. • Mental Health Foundation (MHF) (1997), Knowing Our Own Minds report • MHF/SCMH (2002) Being There in a Crisis report • Plummer, K. (1995) Telling Sexual Stories: power, change and social worlds, London: Routledge

50. References cont’d • Prior, L (1993) The Social Organisation of Mental Illness. London: Sage • Riessman, C.K. (1990) Strategic Uses of Narrative in the Presentation of Self and Illness: A Research Note, Journal of Social Science and Medicine, 30 (11) 1195-1200. • Rogers, A., Pilgrim, D. and Lacey, R. (1993) Experiencing Psychiatry, London: MIND/Macmillan. • Rose, D., Campbell, P. and Neeter, A. (1993) Community Care: users' perspectives, in M. Weller and M. Muijen (eds.) (1993) Dimensions of Community Mental Health Care, London: W.B. Saunders • SCMH (1998) Acute Problems: A Survey of the Quality of Care in Acute Psychiatric Wards, London: Sainsbury Centre for Mental Health. • SNMAC (Standing Nursing and Midwifery Advisory Committee) (1999) Mental Health Nursing:Addressing Acute Concerns. London: Department of Health. • Sutherby, K., Szmukler,G.I., Halpern, A., Alexander, M., Thornicroft, G., Johnson, C., Wright, S. (1999) A study of ‘crisis cards’ in a community psychiatric service, ActaPsychiatr. Scand. 100:56-61. • Taylor, L. (1996) ECT is Barbaric, in J. Read and J. Reynolds (eds.) (1996) Speaking Our Minds, Buckingham: Open University. • Tomlinson, D. (1996) (ed.) Alternatives to Hospital for People in Crisis - Papers from a conference held at Leeds University, unpublished report, London: South Bank University.