Why we’re challenging behaviour

“I would have cut my arm off rather than employ another support provider at that time”

So says Claire, mother of Ben, in the wake of one of this country’s most appalling, sustained failures to support a young learning disabled man.

Ben was a patient at Winterbourne View. You may remember him from Panorama.

Following Panorama, Winterbourne View of course closed and Ben was transferred to the Atlas Project, in rural Devon. Details of the alleged horrors of that place have been sub judice – the company’s management and staff were all on trial – but Ben’s mum sums her view up when she says “suffice to say it was 100, no 1000 times worse than Winterbourne.”

“It was 100, no 1000 times worse than Winterbourne.” Ben’s mum

It is very difficult to put ourselves in the shoes of a severely autistic man with a moderate learning disability who has been victim of this sort of institutional behaviour for so long. The mental and physical torment. The ‘punishments.’ The face-down restraint in the ‘seclusion room.’ Ben’s total incomprehension of what was being done to him. His lack of anyone to turn to. His mum, falsely painted as a rogue, was not allowed to see him. Unsurprisingly Ben’s behaviour got steadily worse. He could lash out. He was seen as a difficult patient. He was described by his staff as a dog. Punishment rituals were seen as reasonable responses to Ben’s behaviour, delivered by staff but with the awareness of management.

But here’s the thing. Ben isn’t like that. For the last 2 years, Ben has been supported by Dimensions. Not in hospital, in a house in his local community. There is no face-down restraint. No punishment. Sure, Ben still has bad days but they are less common, less severe, less sustained. Having previously been medicated to the eyeballs, Ben’s dosage is being steadily reduced. There are plans for a holiday, a car, a dog. And the cost? About half of what it cost to incarcerate him in those horrible institutions.

Today, Ben is supported by a team working in a 2:1 ratio. He lives in touching distance of his mum. His support should reduce further as he grows and develops and begins to put the horrors of his past behind him. Along with his family and staff team, Ben has been allocated a Dimensions Behaviour Consultant. Together, using the well established approach of Positive Behaviour Support, they have been substantially responsible for Ben’s improvement.

Ben’s transformation is proof that in virtually every case, challenging behaviour is a form of communication resulting from someone’s environment, not an integral part of their personality. This should not be news. But how many more Winterbournes, how many more alleged Atlas Projects, will need exposing before all those charged with supporting vulnerable people take notice? How many more sons’ and daughters’ lives will be wrecked?

“How many more sons’ and daughters’ lives will be wrecked?”

It is 7 years since Winterbourne View. Despite the resulting ocean of reports, conferences, reviews, plans and good intentions, nearly as many people entered so-called assessment and treatment units last month as left them. Placed incomprehendingly away from their loved ones in the hands of underpaid, underqualified, undersupervised strangers in sterile spaces. Small wonder they have a behavioural response. And so the downward spiral begins, as it did for Ben who first went to Winterbourne for anxiety and left with many more challenges.

“I was told in the Summer whilst Ben was at school that he could do with a good pair of walking boots which I went out and purchased. Two days after they were delivered Ben was taken from school straight to Winterbourne View where he stayed for well over a year, that was his transition in to adult care! I never had the chance to give him his boots and obviously being in an ATU he wasn’t going to be doing much walking, pacing yes but no walking. I didn’t want him to have the boots as I saw them as a reminder and almost ten years later I wanted to do something with them. If I could draw I would draw what freedom means on them to take the negativity away. My aim is to walk in his shoes for a mile and when I told others they wanted to join me .He has new boots and they get a lot of use now as he has a much better life and has choices, he actually loves walking and he and his dog cover many many miles.” – Ben’s Mum, Claire

Dimensions is deeply proud that Ben’s mum has entrusted us with his support. Deeply proud that she can now see a light at the end of the tunnel. That her faith is just beginning to be restored. As she says, “His support isn’t perfect yet, to be honest. But his Dimensions staff genuinely care and do their best. They pick up the phone to me, ask me for advice and involve me in his life. Far from being excluded, I now feel part of his team. Ben still has blips – most usually when something evokes a bad memory – but we’re all heading in the right direction, together. Finally, for Ben and his loved ones, the future is bright.”

“Finally, for Ben and his loved ones, the future is bright.” Ben’s mum

So here is Dimensions’ challenge. Our challenge to all those psychiatrists and psychologists, those doctors, nurses, commissioners and all the other professionals who together take decisions that people should continue to be incarcerated away from their families. We challenge you to be more ambitious on behalf of the people in your care. We ask you to talk to a range of community providers in good time so that working together, alternative support options can be planned ahead of the official Care and Treatment Review. But mostly, whatever your lived experience, we challenge you to believe that severe challenging behaviour occurs as a result of someone’s environment, not in spite of it. It is coping, not challenging, behaviour. Ben is the proof, Ben is our collective guilty conscience. The Transforming Care programme may have just a few months to run but guess what? It is time to transform care.