Transcript Alternatives to hospital for people in crisis

ALTERNATIVES TO HOSPITAL
FOR PEOPLE IN CRISIS
Dr. Jan Wallcraft
Survivor researcher and activist, England
Science and personal experience
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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
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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
Learning about the world
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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, preformed 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.
Losing my way
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As a child I experienced a sense of loss and alienation.
The magic of discovery was replaced with school textbooks 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
Survival
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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
Recovery through learning
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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
Exploring ‘madness’
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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
Trying to make sense of madness and
psychiatry
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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
Madness as a scientific category
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‘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
Deconstructing psychiatry
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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
Foucault and the discourse of
psychopathology
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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
Story telling as a tool of discovery
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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
‘Hard’ and ‘soft’ science
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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
Surveying in-patients
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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
In-patient survey 1989
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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)
Narratives of crisis and treatment
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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
What people said they wanted in crisis
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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)
Safety to express feelings
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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
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)
Surveys on patient’s views of hospital
crisis care
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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)
Lack of psychological/social support
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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)
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Psychological therapies and social skills training
were rare or absent and creative activities were
often run on an irregular, ad hoc basis (SCMH 1998)
Acute/Crisis Care doesn’t address
trauma, abuse, underlying issues
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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).
Acute/crisis care and sexuality
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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)
Women in crisis
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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)
Acute care and medication
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Medication is prescribed to a high proportion of
patients in acute services
Patients experience medication as given with
insufficient information and as causing unpleasant
side-effects
(SCMH 1998)
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(Rogers et al 1993, Goodwin et al 1999).
Service users’s views of acute care
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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)
Admission to acute care (1)
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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)
Admission to acute care (2)
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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)
Seclusion in crisis
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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)
Alternatives (1) Crisis cards, advance
directives, joint crisis plans
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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)
Alternative crisis support
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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
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
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
Holistic support at Anam Cara
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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
Alternative therapies and coping skills
Highbury Grove crisis house
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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
Summary of crisis houses
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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)
Service users’ experiences of crisis
houses
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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
Service users’ quotes
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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
Doing it ourselves
Professionals talking about the Nile
Centre and Anam Cara
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The Nile Centre has been effective in dealing with the crisis
within the African Caribbean population
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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)
The power of stories to heal
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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 traumarelated 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)
Narrative analysis looks for new
meanings and connections
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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)
Stories, not numbers, create change
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Encouraging the telling and dissemination of the lifestories 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
Personal narratives
Sharing stories can change the world
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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.
Storytelling is how culture is shared
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
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
References
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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
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Campbell, P. (1991) In Times of Crisis, OpenMind 52, 15.
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Campbell P (1996a) Challenging Loss of Power, in J. Read and J. Reynolds (eds.)
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Foucault, M. (1971) Madness and Civilisation, London: Routledge.
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Foucault, M.(1972) Archaeology of Knowledge, London: Routledge.
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Hunter, M. (2000) Services need user input. Community Care, Nov 16-22.pp12
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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.
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Mental Health Foundation (MHF) (1997), Knowing Our Own Minds report
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MHF/SCMH (2002) Being There in a Crisis report
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Plummer, K. (1995) Telling Sexual Stories: power, change and social worlds, London: Routledge
References cont’d
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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, Acta Psychiatr. 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.