Poverty and depression left Peter Beresford a virtual prisoner in his own home. But he turned the tables when he used his experience to found a user-led research centre.
It was 14 years ago that a fellow psychiatric patient looked 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, brought up three children in a basement flat in Battersea, London, while living off benefits.
The daily toil of poverty had long caught up with the former Lancaster University lecturer, who had been diagnosed with anxiety and depression. At one stage agoraphobia had got such a hold on Beresford's life that he would only venture out for essential errands such as buying food. Otherwise he was too terrified. On one occasion when he left his flat he ended up lying on the pavement, immobilised by panic.
It was in 1980 that Beresford first sought help from his GP for his mental health problems. He was referred to a psychiatrist who prescribed tranquillisers. It was ten years before he was off benefits and able to face life head on. Above all, Beresford insists, it was the poverty of those years that compounded his mental distress. "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."
As if to rub salt in the wound, "experts" told Beresford, who taught social policy at Lancaster University from 1975-77, 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."
But the psychiatrist was way off mark. Because Beresford, unlike most National Health Service psychiatric patients, was given the option of seeing a psychologist whose more empathetic and less medical "talking therapy" enabled him to address past trauma in his life and encouraged him to find ways of overcoming his mental health problems, such as trying to walk a bit further from his front door every day to overcome his agoraphobia.
Gradually Beresford's mental distress improved to such an extent that he was able to come off the addictive Ativan tranquilliser he had relied on for six years and manage the withdrawal effects, such as sensory and physical disturbances and panic attacks.
This allowed Beresford to continue with renewed vigour his interest in community initiatives such as local regeneration, planning and child-care projects. But it was in 1987 that what he 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.
From there things accelerated and in 1990 he landed a part-time lecturing job in the social work department at Brunel University (then the West London Institute).
He rose to 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 to give them more control over their lives.
Beresford's journey has been a remarkable one and his past psychiatric history has, somewhat ironically, given him a degree of credibility. While the government 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 act as policy advisers. Early this year Beresford is scheduled to present their findings to health minister John Hutton.
His time under psychiatric care has helped him formulate critiques of psychiatry that go deeper than its need for more input from service users. Essentially, he believes the medical model of mental illness is flawed. With its emphasis on medication, diagnosis and symptom control, Beresford fears that, rather than helping patients to regain control of their lives, it takes away their autonomy.
He offers an example from his hospital days when psychiatric staff chose not to tell 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 other patients to hear.
"We might have wanted to go to the funeral as part of the grieving process," Beresford says. "This was denied us. For me, this is symbolic of how psychiatry fails patients."
With his experience being a fundamental pillar to his philosophy, he has been honest with colleagues about his psychiatric history.
"Generally people have been positive - something that I know does not always happen," Beresford says.
But there were exceptions. When he was discussing an application for funding for a user-led project, a professor from another university questioned whether he planned to discuss theoretical issues in the proposal. "Would he have asked any other professor the same question?" Beresford asks.
Despite his remarkable transition from chronically ill psychiatric patient to high-ranking academic, Beresford is hesitant to describe himself as having "recovered". He says the days when, overwhelmed with anxiety, he just felt like running out of the lecture room are not far gone. Although he stopped using mental health services in 1993, he is aware of his vulnerabilities. Despite increasing work pressures placed on academics, Beresford tries to restrict his working hours to nine to five, Monday to Friday.
Another long-term effect of his past is his aversion to money matters. "It is something that still frightens me," he says. "For example, I am always late on complicated expenses such as travel claims."
Beresford admits he can never be sure that he will not relapse. And, despite having informal support networks, he doubts whether he could overcome a second bout of depression.
Nevertheless, he remains proud of his experiences. "I do not believe in the virtues of suffering," he says. "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 conducts research that seeks to involve service users and develop more equal research power relations between professionals and users
- Four of the centre's seven workers are disabled people or mental health service users
- Projects have included: Poverty First Hand, in partnership with Ruth Lister of Loughborough University, which explored how people with experience of poverty could challenge social exclusion; a user-led evaluation of the Leonard Cheshire Disabled People's Forum; and meetings between patients and palliative care professionals aimed at improving patients' quality of life.