We must listen to, respect, and value people with learning difficulties
The government is still failing to protect and empower people with learning difficulties, say Emily Burr, Kerry Martin and William Parmiter
We are Emily, Kerry, and William. We are three writers who also happen to have a learning disability. We live and work in Dorset, and we each require various kinds of support to help us manage our daily lives. We want to share our thoughts about the abuse at Whorlton Hall shown in the recent Panorama programme. We are shocked and distressed by what took place there to some of the most vulnerable people in our society and think it’s appalling that people were given places here, away from their families, to “best” aid their recovery. Thanks to failings by too many, their “treatment” was ridicule, taunting, and emotional torture. We find it shameful and disgusting that such abuse can happen in this day and age.
We want to give those people who were abused a voice, especially because there has been so little, if any, comment from people with learning disabilities in the media. If we were listened to and action was taken, we would not be watching more abuse in another care setting, eight years after the abuse at Winterbourne View. We imagined how we might feel if this happened to us. We think we’d feel very scared and might not want to leave our rooms, making us even more isolated, depressed, and anxious, worrying about what might happen next. If you are scared someone might taunt you, how could you ever relax, or sleep at night? We think we might cry, and try to run away. It would be horrible.
How can DBS checks, a whistleblower, and over 100 CQC visits miss this abuse? Why did it take an undercover investigator to pick it up?
It feels like funding for people with learning disabilities is increasingly unimportant, perhaps because we make less noise about getting our human rights met or, more worryingly, that we are still not valued and respected. For example, why have the practical recommendations that Stephen Bubb made in his report on Winterbourne View not been acted upon? He called for the closure of assessment and treatment units, and for them to be replaced with improved care for people in the community. Too many people still live in such units. There will always be some people who need specialist intervention with properly trained staff, but many can be supported in the community closer to home, with the right care. And we continue to hear about avoidable deaths of people with learning disabilities in hospital settings. How much more neglect or abuse needs to happen before things improve?
There’s more. In 2017, we were upset when the Department of Health stopped funding the National Forum of People with Learning Disabilities. I (Kerry) was co-chair, so know firsthand what an important platform this was. Here we would speak with ministers and others about what was working well, or not, for people with learning disabilities. We consulted on white papers that would have an impact on the lives of people with learning disabilities. It worked. The committee (comprised of one elected representative from each region by peers and all with a learning disability) represented the voices of people with learning disabilities from across the country. There was no statement as to why it closed either. So much for the government saying it wants to listen to us, respect us, and value us.
So, what do we want to happen now? We’d like the government to apologise for making a mess of things, to move on, and take action. No more reports. Until there is more investment in community services that can support individuals properly, we want hospital residents to have an advocate, who is properly trained, to support people through their hospital journey. We also ask that people with learning disabilities in the community can learn skills to speak up for themselves. Then, if they ever find themselves being abused (it happens in the community too) they will understand it’s wrong, and are empowered to know how to safely tell someone about it. We have Speaking Up groups in Dorset run by People First Dorset, which make a huge difference to people here. The government should pay for these. We also ask that the National Forum is brought back, or a similar representative body.
The people in government and professional bodies have a responsibility to prevent this kind of abuse. We want them to start valuing people with learning disabilities, to meaningfully include us in discussions, and to take action now so that people do not have to suffer again in our “caring” settings.
This article was written by Emily Burr, Kerry Martin and William Parmiter. They were supported in editing the article by Laura Kerr, Manager of People First Dorset.
It originally appeared in the British Medical Journal: https://blogs.bmj.com/bmj/2019/07/02/whorlton-hall-panorama-should-alert-us-to-systemic-neglect/