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Distress
to policy
February
4, 2001
Professor
Peter Beresford used to be a chronically ill psychiatric patient.
Now he is a high-ranking academic involved in establishing a user-led
research centre. He spoke to Adam
James.
.....
It was 14 years
ago that a fellow psychiatric patient looked at Peter Beresford
in the eyes and said: "You look as though you are going to
be shot at dawn."
Beresford's
visible desperation was the culmination of seven years of unemployment
during which he and his partner, Suzy, living off benefits, brought
up three children in a basement flat in Battersea, London.
The daily toil
of poverty had long caught up on the former Lancaster University
lecturer, who was diagnosed with anxiety and depression.
And at one stage
agoraphobia had got such a hold on Beresford's life that he would
only dare venture out of the house to carry out essential duties,
such as buying family food. Otherwise he was just too terrified.
And on one occasion
that he left his flat he ended up just lying on the pavement, immobilised
by panic.
It was in 1980
that Beresford first sought help.
He went to see his GP, was subsequently referred on to a psychiatrist,
and was prescribed tranquillisers.
This marked
the beginning of Beresford's 10-year spell as a benefits-reliant
psychiatric patient.
Above all, Beresford
insists, it was the poverty of those years that compounded his mental
distress.
"Basically
I was just not able to cope while living off benefits, especially
with having to help bring up three children. An MP who lives off
benefits for a week or so may tell us it is not so bad.
"But living
like that for months or years is completely different.
"I do not think I could have imagined what the poverty and
distress involved were like if I had not experienced them myself.
"In terms
of the loss of choice and hope, sense of fear and worthlessness
and sheer wretchedness I would not wish it on anyone but my worst
enemy."
As if to rub
salt in the wound "experts" told Beresford, who from 1975-77
taught social policy at Lancaster University, that his future prospects
were not promising.
"In 1986
a psychiatrist said to me that the best job I might be able to get
was as a clerk." he remembers. "And I do not think the
psychiatrist thought a lot of clerks.
"And it
can be very difficult not to belief these kind of prophecies put
to you by professionals."
But the psychiatrist
was way off mark.
Because Beresford,
unlike most NHS psychiatric patients, was given the option of seeing
a psychologist, whose more empathetic and less medical "talking
therapy" enabled Beresford to address past trauma in his life
and to encourage him to find ways of overcoming his agoraphobia,
anxiety and depression.
This included
the daily discipline of making himself walk further away from the
front door of his home.
Gradually Beresford's
mental distress improved to such an extent that he was able to both
come off the addictive Ativan tranquilliser he had relied on for
six years, but also to manage the withdrawal effects such as sensory
and physical disturbances and panic attacks.
This stable
platform enabled Beresford to continue with renewed vigour his interest
in community initiatives such as local regeneration, planning and
child-care projects.
But it was 1987
that, what Beresford calls his "second birth", began in
earnest.
The Joseph Rowntree
Foundation awarded him a grant to research how disabled people and
mental health service users were participating in social care policies
and projects around the country.
From there matters
accelerated, and in 1990 he landed a part-time lecturing job in
the Social Work department at Brunel University (then the West London
Institute).
His continued
rise saw him become Professor of Social Policy at the same university,
and then founding director of the Centre for Citizen Participation
which oversees research into how disabled people and mental health
service users can influence policy and services, so giving them
more control over their lives.
While Beresford's
journey has been a remarkable one his past psychiatric history has,
somewhat ironically, given him a degree of credibility.
While the Government
presently seeks to turn the buzz-words of "user empowerment"
into a practical working reality, Beresford has been at the right
place at the right time.
As chair of
user-controlled organisation Shaping Our Lives, Beresford and his
colleagues were ideally placed to win funding from the Department
of Health to advise it on how to achieve its progressive aims.
Yet Beresford's
own time under psychiatric care has helped him formulate critiques
of psychiatry which go deeper than its need for more input from
service users.
Essentially,
he believes the medical model of mental illness is fundamentally
flawed.
With its emphasis
on medication, diagnosis and symptom control Beresford fears that,
rather than helping patients to regain control of their lives, such
autonomy is being taken away.
Beresford offers
an example from his own hospital days when psychiatric staff chose
not to tell him and other patients that one of their friends had
committed suicide by throwing herself from a building.
The staff feared
it would be too distressing news for their patients to hear.
"But we
might have wanted to go to the funeral as part of the grieving process,"
asserts Beresford.
"This was denied us. For me, this is symbolic of how psychiatry
fails patients."
With his own
experience being a fundamental pillar to his philosophy he has been
honest to his colleagues about his psychiatric history.
"Everyone
has generally given me a positive response - something which, I
know, does not always happen with other service users," explains
Beresford.
Yet there are
exceptions. Such as when he was
discussing an application for funding for a user-led project when
a professor from another university questioned whether Beresford
planned to discuss theoretical issues in
the proposal.
"I was
left wondering how many other professors this person would have
felt the need to ask such a question," says Beresford.
Yet, despite
his remarkable transition from chronically ill psychiatric patient
to high-ranking academic, Beresford does not describe himself as
having "recovered".
In fact the
days when, overwhelmed with anxiety, he just felt like running out
of the lecture room are not far gone.
And, although not having used mental health services since 1993,
he has grown aware of his particular vulnerabilities.
Despite increasing
work pressures placed on academics Beresford still tries to restrict
his working hours of nine to five Monday to Friday.
Another long-term effect of his past is his aversion to money matters.
"Money
is something that still frightens me," he admits
"And I still find it difficult dealing with things involving
money. I am, for example, always late on complicated expenses like
travel claims."
But despite
all past achievement Beresford admits he can never say never to
having again a need to use the psychiatric services. In fact he
dreads such a prospect.
And despite
having informal support networks he doubts whether he could again
manage such a predicament.
Nevertheless, Beresford still remains proud of his experiences.
"I do not believe in the virtues of suffering," he reflects.
"But I am proud of the road that poverty and distress have
helped set me on and the way that they have helped me gain some
understanding and wisdom both about myself and others. Above all
what I and others are showing is that service users can make a difference."
The Centre for Citizen Participation
- founded in 1997 the centre develops participatory and emancipatory
research seeking to involve service users and develop more equal
research power relations between professional and users.
- Four of the centre's seven workers are disabled people or mental
health service users
Projects include: (i) Poverty First Hand in partnership with Professor
Ruth Lister of Loughborough University. It explored how people with
experience of poverty can challenge social exclusion; (ii) user-led
evaluation of the Leonard Cheshire Disabled People's Forum, the
UK's largest initiative involving service users in an organisation
for disabled people; (iii) user involvement in palliative care by
helping patients and professionals hold national and regional meetings
around the UK
© Psychminded,
Feb 2001
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