If you don’t respect us in death, how can you respect us in life?

We are people with learning disabilities and people who have autism. Some of us are employed as project workers and some of us are volunteers at CHANGE, a human rights organisation led by Disabled People. This is the first chance we’ve all had to get together and look at the Mazars Review of Southern Health NHS Foundation Trust April 2001-March 2015.
First of all we are devastated and truly sorry that Connor Sparrowhawk and hundreds of other people with learning disabilities, have died in such awful circumstances and we have great respect and are very grateful to Connor’s families work to make things better for all people with learning disabilities.
We have met and talked about the Mazars Review and we would like to share with you some of our thoughts and feelings. Firstly, we don’t find the easy read version of the Mazars Review, very easy to understand. We don’t think that it includes some of the most important information and we think that it covers up the worst parts of the Review for example that 1000 people with learning disabilities died unexpectedly since 2011 and the NHS didn’t investigate why some of these people with learning disabilities died. We think that it is very important for all people with learning disabilities to know what has gone on at Southern Healthcare NHS Foundation Trust and for this to happen, there needs to be a clearer version of the easy read Review.
We think that not investigating all the deaths of people with learning disabilities and or autism who have died unexpectedly in Southern Health NHS Foundation Trust is appalling. It makes us feel very shocked, upset and angry, like our lives are not important. We wonder if the top people at Southern Heath NHS Foundation Trust feel that the lives of people with learning disabilities are important and valuable and we wonder if they are interested in our views. Why would they do this? Why don’t they want to understand what happened when a person with learning disabilities dies unexpectedly? Why don’t they want to learn and improve and make things better for people with learning disabilities using their services?
Because of what has happened, we think that the top people don’t want us to stand up for our rights and have power. The death of one of us should be investigated just as much as someone who isn’t disabled and the fact that this hasn’t happened is horrifying and against the law. It makes us feel very sad and anxious. We are heartbroken for the families and carers who haven’t been involved when they should have been.
We agree with the Mazars Review that the responsibility for this lies with the Board of Directors and the Chief Executive. This has been going on for years.
We think that a start would be for them to write an apology to all the families who have lost loved ones whose deaths have not been investigated and to all people with learning disabilities and or autism across the country.
How do we know that we wouldn’t be treated in the same way if we had to go into Southern Health NHS Foundation Trust Services?
If you don’t respect us in death how can you respect us in life?
We think that the Board and the Chief Executive need to be held to account for what has gone wrong and that they should resign.
We are worried that what has been happening in Southern Health NHS Foundation Trust is happening in other parts of the country, in other Trusts too.
When we go into hospitals like in Southern Healthcare, our power is taken away from us.
We have had lots of discussions with many people with learning disabilities and we have lots of ideas of how things can be improved for all people with learning disabilities and people who have autism, here are some of our thoughts.
We think that there needs to be the right support, on our terms,for all people with learning disabilities to live in the community.
We think the Chief Executive, Board and all the staff in NHS Trusts should have training delivered by professional people with learning disabilities and their families.
We think that people with learning disabilities need to have training by their peers, other people with learning disabilities, about what to do if they do not feel listened to and respected by staff.
We think that there should be Scrutiny Panels in every area made up of Disabled People including people with learning disabilities and or autism, and family carers. These Scrutiny Panels should have the job of overseeing how the commissioners are spending the money. The Scrutiny Panels should have the job of looking at and seeing that each person with a learning disability and or autism is getting the best service for them. The Scrutiny Panels would need to make sure that money is being spent wisely in ways that respect the rights and wishes of each person with learning disabilities and or autism and their families.
We need trained advocates and lots of powerful self advocacy groups in every area who can speak out with and on behalf of people with learning disabilities and or autism, supporting them to have their rights, good services, to be part of communities and to have a powerful voice when things go wrong.
We want powerful, wise, people with learning disabilities and families to be involved and at the forefront of looking at ways of making things better for other people with learning disabilities and or autism.
Above all, we want to work together so that every person with learning disabilities and or autism and every family across the country has respect, we want to be valued, we want our rights respected, our voices to be heard and changes to happen quickly. We need to stop talking and ACT.

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