Les Bonner is the father of a young man who was a patient at Winterbourne View. Here, he tells how his son’s experience left him traumatised and subject to constant crises.
Leslie was diagnosed with autism at three years old. He seemed to thrive at our village school in North Devon, where he was supported by a classroom assistant, and later at a special unit for autistic children. But on reaching adolescence his behavior became more challenging and, at the age of 18, aware of how his condition denied him the same opportunities as other young people, he tried to take his own life. On a life skills course at a local college he broke a window and tried to jump from the building.
Our local authority considered provision in North Devon inadequate for his needs so as Winterbourne View was the nearest place equipped to look after him, the decision was made to send him there. After speaking to both the psychiatrist and manager from Winterbourne View, my wife and I felt relief and gratitude that, in this crisis, the authorities had pulled all the stops out to find good quality care.
We could not have been more wrong.
Frightened
Vulnerable patients filmed by the BBC’s Panorama programme were being pinned down, hit and verbally abused. Although we don’t think Leslie suffered the same experience, he was unhappy from the start. We phoned him each evening. He was frightened and wanted to come home so I arranged to take him out for the day on the first weekend. However, when I got to the reception I was told he could not go out because no staff member was free to accompany us. I insisted on seeing him and stayed there from around 11am to 3pm while phone calls were made with me arguing that he was a voluntary patient and should be allowed out with me.
During this time several patients came and talked to me and it was clear they had little to do with their time other than eat sweets and smoke cigarettes. Finally, the hospital agreed to let me take Leslie out on condition he was back before 5pm, leaving us less than two hours, just enough time to go for coffee at a nearby supermarket. After the visit I sat in the car park, trying to pull myself together.
This experience did not prepare us for the alarming events that followed. Our evening calls to Leslie were often interrupted and when asked about it he said it was because “somebody was kicking off”. By this he meant someone was being restrained. We were horrified. Leslie became fixated and talked continually about restraints.
Despite its outward appearance it became clear to us this was a terrible place. Leslie was being held there but nobody was doing anything to help his state of mind. I spoke to a psychiatric nurse assigned to work with him who said she was unable to start any useful programme because of the high number of restraints taking place. She believed Leslie would be better off elsewhere. She also said she was unhappy about the health care of all the patients, particularly their diet, lack of exercise and a reward system of giving out sweets. I witnessed the reward system in operation but never imagined the punishments that also took place.
Leslie was 18, confused and frightened and needed a therapeutic environment. Instead, he got Winterbourne View. While we were trying to get him out we arranged for weekends and breaks at home but it was always dreadful taking him back, knowing they had the power to section him. Because he was 18 we did not have the legal power to speak for him and as he was not able at this time to speak for himself the authorities were the dominant decision makers. Yet the authorities did not have enough information about Leslie and we had to struggle to get our voice heard. We were desperate to get him out of there but were told that if he did not return after a home visit, he would be sectioned.
We set about convincing our local authorities to move him. After some badgering they listened and finally, after 14 weeks, it was agreed Leslie could leave as long as he went straight to a residential college.
At the college Leslie was assigned a psychologist who reported that he was suffering from posttraumatic stress disorder as a result of what he had witnessed and experienced at Winterbourne View. Leslie was unhappy at the college, wanted to come home and woke up at nights screaming with fear and anxiety. The college was well resourced in many ways but lacked staff properly qualified for work with autism. Although mostly kindly and well intentioned, many were untrained and on low wages and said and did things which just confused Leslie and added to his anxieties.
Misgivings
Although he was coming home for weekends and holidays it was decided he should live at home and a programme of support put in place. An agency was appointed and an ‘enabler’ came to take Leslie out on activities. After a while we began to have misgivings and discovered the enabler had cancelled regular meetings with a psychologist without consulting us because “he didn’t believe they were doing any good”. We were disturbed by some of the sexist and racist expressions Leslie was repeating. For example, he asked us, “What’s a Pakki?” and told us how, on one occasion, his enabler had asked him what marks out of ten he would give a woman walking by. The enabler was untrained and on low wages so we ended the arrangement with the agency.
Looking online I found an agency specialising in work with autism. The Devon Autism Centre had just opened and the husband and wife who managed it were well qualified from Sheffield University which I knew to be one of the best in the country for its study in autism. I talked to them about our son and they agreed to help him. A manager from our local authority looked into it and agreed to the funding. The managers are committed to their work and co-ordinate a carefully selected and supervised team. The wife, a psychologist, comes to our house and helps us, as a family, develop strategies to help Leslie. She is constantly in touch with us and Leslie through emails and the enablers are all very capable so Leslie is now involved in a programme of learning and development. However, the process of learning and engaging in the world around him heightens his anxieties so we are still at our wits end dealing with one crisis after another.
One of our main fears is that during a crisis something will happen that puts our son’s well-being into the hands of people who know little about him. We were shocked to discover that when he turned 18 the state had much more power over him when it came to mental health. Psychiatrists have had very little contact with Leslie, are not well informed about him and have not communicated with the people who work regularly with him. They are at the top of a decision-making hierarchy and exert a lot of power although Leslie has now been appointed a psychiatrist who, we are assured, has a warm manner and consultative style.
Missing
One morning shopping with his mum Leslie went missing and was found in the early hours of the following morning by the police 25 miles away in a bus shelter. He had expressed the wish to explore so it was agreed he could go out as long as he kept in contact via his mobile phone.
On another occasion the police answered a call and found Leslie on a high bridge. They talked to him and he told them he was not there to kill himself. Something that was said made him panic and run off and he ended up on the wrong side of the railings. The police pulled him over the railings and took him to North Devon Hospital. When he got there he struggled and was restrained and handcuffed. His brother James arrived first to find him handcuffed on the floor. James talked to him on a subject that interests him, the policemen took his lead and he calmed down and was allowed to sit up. At 5pm he was interviewed, given a blood test and taken to a cell at the police station where none of his family were allowed to see him. We were told he had to stay there until a doctor came to make a psychiatric evaluation. We were advised to go home and wait for a phone call. We were afraid he would be taken to a psychiatric hospital so we contacted the Devon Autism Centre who prepared a room at one of their residential homes and contacted the police telling them they were prepared to take responsibility for looking after Leslie during this crisis. We left the mobile number of Leslie’s clinical psychologist who was waiting to give information but nobody phoned her. At 12pm the psychiatrist rang to tell us she intended to keep Leslie in the cell until next day when a team would arrive to assess him.
You can imagine how we felt. None of the people dealing with him knew about Leslie’s needs. People who did were ready and waiting to look after him in a safe place with alarms and 24-hour care and with plans to take him on a bus trip next day to a show. Instead, he was in a police cell, had done nothing wrong and the police didn’t want to keep him. He had told a staff member at the hospital that he did not intend to harm himself and only said he wished he had when he was handcuffed on the floor. I told the doctor I had taken advice and didn’t believe Leslie was section-able and that being kept in the cell any longer would make things worse. I told her that I had taken legal action against Winterbourne View and would take legal advice if they held him any longer because he was not threatening to take his own life. The psychiatrist agreed to make some calls and get back to me. Finally, after a call from social services, it was agreed to release Leslie to the care home. At 1.30am I took some of his things to the police station where I found Leslie pale and frightened.
The police were just doing their job, were as kind as possible and wanted to hand Leslie over quickly into proper care. Poor communication between psychiatric health authorities put Leslie through this ordeal. If we had not threatened legal action he would have been even longer in a cell. Instead he spent a fun day with people he knows.
Parents should not have to fight for their children like this – there should be a proper mechanism in place. Recently, Leslie has become involved in a pilot scheme initiated to create a ‘Police Passport’, a database aimed at informing police, on the spot, about vulnerable people and reducing the risk of this kind of tragedy.
Drain
Leslie is now living at home but as I am 67 and my wife approaching 60, his programme is aimed at enabling him to gain the skills necessary to have a place of his own with supported living. Leslie’s autism means he lives in the moment and finds it difficult to visualise a time when things will be better for him. At times he gets despondent and his anxiety levels reach crisis level. His brother James, the person Leslie relates best to, lives at home and is dedicated to his well-being but it is a terrific drain on him as we go from one crisis to another.
Only people who constantly live with this sort of fatigue and worry can understand what it’s like. Professionals who help us are sympathetic but they can go home in the evenings and get away for holidays. Media attention around Winterbourne View enabled local authorities to justify the release of funding to help our son but there is still no effective mechanism in place to help us cope in a crisis. The crisis support team’s role is only to come and assess whether a person should be admitted to hospital, which is frightening, or the police can come, which is just as bad. There is no trained or qualified person to come to our home and help us get through the crisis.
Mental health provision for vulnerable people needs to move away from relying on unskilled, untrained and low paid workers towards attracting people who wish to work where there is an ethos, training opportunities and upward mobility. It should not be a job that is just more attractive than working at a fast food outlet. There are many who share our fears and frustration when, after all the promises from the government, we see no real change in the help available.
