{"id":44914,"date":"2019-07-02T13:34:28","date_gmt":"2019-07-02T12:34:28","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=44914"},"modified":"2019-07-12T16:50:09","modified_gmt":"2019-07-12T15:50:09","slug":"whorlton-hall-panorama-should-alert-us-to-systemic-neglect","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2019\/07\/02\/whorlton-hall-panorama-should-alert-us-to-systemic-neglect\/","title":{"rendered":"We must listen to, respect, and value people with learning difficulties"},"content":{"rendered":"<p class=\"standfirst\">The government is still failing to protect and empower people with learning difficulties, say Emily Burr, <span style=\"font-weight: 400\">Kerry Martin and William Parmiter<\/span><\/p>\n<p><!--more--><\/p>\n<p><span style=\"font-weight: 400\">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.\u00a0<\/span><span style=\"font-weight: 400\">We want to share our thoughts about <a href=\"https:\/\/www.bbc.co.uk\/news\/health-48369500\">the abuse at Whorlton Hall<\/a> 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\u2019s appalling that people were given places here, away from their families, to \u201cbest\u201d aid their recovery. Thanks to failings by too many, their \u201ctreatment\u201d was ridicule, taunting, and emotional torture. We find it shameful and disgusting that such abuse can happen in this day and age.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">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<a href=\"https:\/\/www.theguardian.com\/society\/2012\/oct\/26\/winterbourne-view-care-staff-jailed\"> the abuse at Winterbourne View.\u00a0<\/a><\/span><span style=\"font-weight: 400\">We imagined how we might feel if this happened to us. We think we\u2019d 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.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\"><a href=\"https:\/\/www.bmj.com\/content\/365\/bmj.l4228\">How can DBS checks, a whistleblower, and over 100 CQC visits miss this abuse<\/a>? Why did it take an undercover investigator to pick it up?\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">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 <a href=\"https:\/\/www.england.nhs.uk\/wp-content\/uploads\/2014\/11\/transforming-commissioning-services.pdf\">the practical recommendations that Stephen Bubb made in his report on Winterbourne View<\/a> 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?\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">There\u2019s more. In 2017, we were upset when the <a href=\"https:\/\/www.learningdisabilitytoday.co.uk\/anger-as-government-set-to-end-funding-for-national-learning-disability-forums\">Department of Health stopped funding the National Forum of People with Learning Disabilities<\/a>. 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.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">So, what do we want to happen now? We\u2019d 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.\u00a0<\/span><span style=\"font-weight: 400\">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\u2019s wrong, and are empowered to know how to safely tell someone about it. We have <a href=\"https:\/\/www.peoplefirstdorset.org.uk\/\">Speaking Up groups in Dorset run by People First Dorset,<\/a> which make a huge difference to people here. The government should pay for these.\u00a0<\/span><span style=\"font-weight: 400\">We also ask that the National Forum is brought back, or a similar representative body.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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<\/span> <span style=\"font-weight: 400\">so that people do not have to suffer again in our \u201ccaring\u201d settings.\u00a0<\/span><\/p>\n<p><i><span style=\"font-weight: 400\">This article was written by <strong>Emily Burr, Kerry Martin and William Parmiter<\/strong>. They were supported in editing the article by Laura Kerr, Manager of People First Dorset.\u00a0<\/span><\/i><\/p>\n<p><i><span style=\"font-weight: 400\"><strong>Competing interests:<\/strong> None declared<\/span><\/i><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The government is still failing to protect and empower people with learning difficulties, say Emily Burr, Kerry Martin and William Parmiter [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2019\/07\/02\/whorlton-hall-panorama-should-alert-us-to-systemic-neglect\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":44915,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5749],"tags":[],"class_list":["post-44914","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-perspectives"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - 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