Fears & Nightmares

Rarely a day goes by when I don’t think about what happened at Winterbourne View. As the parent of a young man with learning disabilities the abhorrent abuse exposed by Panorama gave me nightmares for a long time and the visions of the cruelty experienced by those vulnerable people still haunt me.

Last week saw the sentencing of the perpetrators of those abuses (I refuse to use the words “care workers”) and like the rest of the learning disability community I was disgusted at the leniency of the sentences given. I wonder what message it sends out. This evening the follow up documentary will air and all I can say is I’m bracing myself and feel pretty sick, even as I write this, at the thought of it.

The thought that it could so easily have been one of our loved ones is a thought I know has preoccupied many of us with a family member with a learning disability. The “there by the grace of God” comment is one I’ve frequently heard. For some this is more than a fleeting thought and is not too far from the reality they are currently experiencing.

A close friend of mine blogged a couple of weeks ago about her son, James.  http://alifeforjames.wordpress.com/2012/10/14/my-beautiful-son/

James was Sectioned under the Mental Health Act and sent to an inpatient treatment unit at a hospital 150 miles from home. He’s just 16 years old. He was one of three young people from our county at the same hospital (two are still there) and I understand there have been others there in previous months. While I’m not saying that James was treated the same way those at Winterbourne were, the fact that it’s somehow deemed okay to send vulnerable people so far from home speaks volumes to me. How can anyone think that being forced to live apart from your family, be sedated and restrained can be any good for anyone, let alone a vulnerable young man who is unable to make any sense of what is happening to him or understand the reasons he’s there.

Over the last week or so others have written far more eloquently and knowledgably than I ever could about this subject. However, what I think has been overlooked  is early intervention and support for children, young people and their families. Children who often start to exhibit behaviours that challenge existing systems from an earlier age. What sort of support is out there for families with young children or teenagers? These are the children who often become those very adults who are sent out of county, to one unsuitable placement after another. These are the children, now adults that ended up at Winterbourne View.

The seemingly easy and often reported response we hear from families is that there is a culture of blaming the parents when they ask for help…Sometime ago now I worked with a family who had 5 children, the eldest was 13 and at a school for children with emotional and behavioural difficulties. Mum had gone to social care to ask for help with a younger child (aged 4) who she could see demonstrating some of the same behaviours as his older brother did at a younger age. She was sent to a parenting class…at the time I spoke to her she told me “that’s what they always do, I’ve been on so many F***ing parenting classes I could now run the damn things myself, but still no one is giving us any real practical help!”

Families are often left to struggle alone, with children not always deemed eligible for social care support (not disabled enough!) until the situation reaches crisis point. Individual professionals do their best within the constraints of their individual remits but if there is nothing locally available they are sent out of county.

 “The fight for the right support often starts in childhood. An ongoing battle to find the right school, combined with the lack of good support for the family, can mean that the only option is residential school. As the child becomes older, families must struggle to find the right support for them as an adult.  As one emergency leads to another, families become exhausted and frightened for their loved one. As one unsuitable care provider is replaced by the next, they eventually run out of options.”(Out of Sight, Out of Mind –Mencap 2012)

Families need support right from the moment the child starts to exhibit behaviours that challenge and early intervention has to be a priority. They need help to get to the root causes of such behaviour using person centred approaches and not be blamed for causing them.  Families need to be listened to and believed when they ask for help.

In Out of Sight out of Mind, the families talked about their relative not being understood.

“After leaving school, Emmanuel was sent to a residential care home where they didn’t understand his needs. His mother raised concerns, but they failed to put the right support in place. His behaviour worsened, and within six months of leaving school, he was detained under the Mental Health Act and sent to a unit far from home”. [Out of Sight, Out of Mind, Mencap 2012]

All staff who work with anyone with a learning disability must be trained in person centred approaches. This would help wherever they lived and whatever the size of the environment.

“We know that when people are living in an environment with staff who have the skills to support their behaviour and communication needs, their behaviour that challenges can often be reduced or eliminated altogether” [Out of Sight, Out of Mind, Mencap 2012]

There is no place for “hospitals” like Winterbourne and yet sadly, they will continue to be a need for such establishments if there are no other local choices available.  THIS HAS TO CHANGE!

In saying all this I do believe that some good has come from this exposure. The general public reaction alone was far stronger and more outspoken than we have witnessed before. This programme shocked everyone and not just those of us with a particular interest in learning disability.

For some this didn’t come as a such a shock. John Pring, Author of Silent Victims: The Longcare scandal and Longcare Survivors: The Biography of a Care Scandal,  tweeted earlier today “scandalous yes, shocking no!”  http://www.disabilitynewsservice.com/index.php/2012/10/winterbourne-view-shocking-no-scandalous-yes/

I have to question too, whether systems have been or will be changed enough to prevent another Winterbourne happening again. It may sound cynical but we’ve heard the “lessons have been learned” line before (Long Care, Merton & Cornwall) and yet here we are again.

As I watch Panorama tonight my thoughts will be on the people who were abused at Winterbourne and their families. I hope they find some peace of mind and happiness and finally receive the support they need to live their lives with dignity and respect. For young people like my friends son, James I hope systems change quickly and as a matter or real urgency and he and his family get the support they need and deserve.

Link to Out of Sight, Out of Mind


Whistleblower Terry Bryans story


About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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2 Responses to Fears & Nightmares

  1. Liz says:

    I cried as I heard the news this morning on my way to work, devastating for the families involved but for all of us who know that our loved ones are only a whisker away from the same treatment in this cruel world. I’m waiting for the documentary to come up on iplayer so I can watch it because there are some things I can’t face explaining to my beautiful daughter.
    Oceans of tears but we will not give up the struggle to stop this happening.

    • emptynestmum says:

      absolutely Liz, I blubbed the whole way through, just seeing those scenes again was hard enough. we need to keep this in the news and make sure our kids are never out of sight or out of mind ( not that they will ever be out of mind for families) x

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