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Learning Disability England’s response to Tim Smart

The Mazars report into Southern Health NHS Foundation Trust showed that the Trust had failed to investigate hundreds of deaths of people with learning disabilities.

Tim Smart, the Interim Chair, released a review that says what he thinks should happen at Southern Health.

You can read the review here.

Having read the Interim Chair’s Review, Learning Disability England is appalled to learn that the CEO and board of Southern Health will remain in post.

This can only happen in a society where people with learning disabilities are valued less than other citizens.

Jenny Carter, self-advocate and lifetime member of Learning Disability England, said in response to the review:

“I think it’s awful no one has taken responsibility for Connor’s death. People need to be held to account. This happened under the leadership of Katrina Percy and the board – someone needs to take responsibility and go. We need not to forget the others who have died in the hands of Southern Health.”

Wendy Burt, family member and Coordinator of the Essex Carers Network commented:

“Families and friends campaigned hard for an investigation which resulted in the Mazars report showing significant failings, yet still the individuals who led the organisation which failed remain at the helm.

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An Interview with Simon Cramp

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Simon Cramp is a self-advocate and a lifetime member of Learning Disability England.

Here he talks about what LDE needs to do, what the EU Referendum means for us and Learning Disability Week.

What do you think Learning Disability England needs to do to change things for the better for people with learning disabilities?

We have to be seen as one united voice as the likes of government, the public sector and local government will not listen if we look like we can’t agree on what our main focus is.

Secondly we need to all say the same thing, i.e. if we have a view on something we all need to agree and we need to share the workload.  So say if you need someone to chair a conference it is not the same person all the time and we don’t have people with ego that think they are better that the rest of us.

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Voting and Politics

Today the UK will vote on whether we want to stay in the European Union (EU).

It is a very important vote and we hope that lots of people with learning disabilities will have their say.

But we know that political discussions like these are full of jargon and not very accessible.

Now is a good time to think about how people with learning disabilities get involved in politics and how easy or hard it is for them to get involved.

Here Gary Bourlet answers some questions about politics.

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Are you voting in the referendum today?

I am voting in the referendum today, a referendum does not come around very often, not like elections. So I will be voting for what I believe in.

Why are you voting?

It’s important that I vote because I want to, because I care about this country and the direction we are going.

Why is it important that people with learning disabilities vote on issues like this?

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First week of Learning Disability England

The Launch

On Tuesday 14th of June we launched Learning Disability England (LDE) at the House of Lords with about 150 people crammed in a marquee on the River Thames. There were so many people there it was hard to speak to everyone individually.

Baroness Sheila Hollins made a good speech and introduced me.

I started by cracking a few jokes at the beginning to relax myself and also everyone in the audience. I welcomed everyone and gave my speech.

In my speech I said:

“We have a good team of people to make this happen

We are in this together and also stronger together

For far too long we have been working separately and our voices have not been strong enough on our own to make change

To make change we need to work with others.”

It was great to finally launch Learning Disability England after working on it for so long.

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We’re launching Learning Disability England

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For a long time People First England has been working on setting up a new organisation.

On Tuesday we will launch Learning Disability England along with other self-advocates, families and organisations.

We are now @LDEselfadvocate on twitter and LDE Self-Advocates on facebook.

Here are Gary Bourlet’s thoughts as we prepare to launch Learning Disability England.

LDE is important because we want Self-Advocates to work closely with families, carers and organisations that work with people with learning disabilities, to come together and work together.

For far too long we have been working separately and our voices have not been strong enough on our own to make change.

To make change we need to work with others.

United we stand, divided we fall.

Being an independent organisation is an important part of LDE for me. It will be steered by people, families and organisations.

We will campaign on what our members agree on and vote on what issues are important to us.

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Southern Health Trust

Today Southern Health Trust made a statement to Sara Ryan and her family saying they were very sorry for Connor’s death.You can read the statement from Southern Health Trust here.

They said it was their fault because they neglected him. We were relieved to read this but wonder why they took so long to say sorry properly. Connor’s family have had to wait 3 years for this and have had to go through hell.

We wonder why they did not talk about how badly the family have been treated by the Chief Executive, Katrina Percy, some of their staff and some of their board. We wonder how so many people who do their jobs badly still have them and get paid so much money.

They also said that Sara Ryan has conducted herself and the Justice for LB campaign in a dignified, fair and reasonable way. We think that the Justice for LB campaign has done more than any other campaign to make people think about human rights and all people with learning disabilities.

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Learning Disability England Academic Network

We’re building a new organisation, Learning Disability England.

It will bring together people with learning disabilities, their families and friends, and organisations.

We did a consultation to find out what people thought of our ideas. You can see the results here.

We are happy to say that a group of academics want to be part of Learning Disability England and help us make things better for people and their families.

They have written some Plain English information about who they are and what they will do.

Who are we?

We are a group of people who work in or with Universities.

We are teachers, researchers and students.

Why do we support Learning Disability England?

We believe it is important that people with learning difficulties and their families have a loud and effective voice.

We believe that lots of things people with learning difficulties and families have fought for are in danger of disappearing.

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Learning Disability England Consultation Results

People First England is working with the charity Housing & Support Alliance and lots of other people to create a new organisation called Learning Disability England.

We did a consultation to find out what people thought of this idea.

A consultation is when you ask people what they think about something.

Here are the results of the consultation!

Thank you to everyone who took part. 

Download (PDF, 753KB)


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Loneliness for People with Learning Disabilties

We’ve been talking to lots of different people as we create Learning Disability England and one of the things that people are saying they’re worried about is loneliness. Loneliness can be a disability in itself.

Loneliness is something that I have experienced. Even though I used to be married I lived in a place called Worstead which was a very small village. The nearest shops were about ten miles away. I was lonely and didn’t have a job, I had to rely on my wife at the time for getting out and about.

Like me other people with learning disabilities have to rely on other people to get out and about. If you haven’t got any services around you it can be very difficult. If you can only go out to the shops about once a week that’s really difficult. Public transport is essential.

This has a mental effect on you.

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The Why Workshop

The Why Workshop was a day where people, families and organisations came together to discuss what we want Learning Disability England to do.

Here are Gary Bourlet’s thoughts about the day.



The day began with Jackie Downer and David Towell welcoming everyone.

Jackie said this would be hard work and difficult, but we must work together.

We showed a video about the journey of Learning Disability England.

You can watch the video here.

I opened on What is Learning Disability England? The story so far from a self-advocate.

Sheila Moorcroft spoke on behalf of parents and Alicia Wood spoke on behalf of Organisations.

The Learning Disability England steering group had explained where we are in creating Learning Disability England.

We have to say a big thank you for Joe McDaniel from Skillnet who did the illustration drawings which there is few people in England who do this and we need more illustrators.

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Missing in the Media

Gary Bourlet being filmed

People with learning disabilities are missing in the media. You hardly see people in new stories or documentaries. Lots of things that should be in the news are swept under the carpet. And then when there is a story about learning disabilities it’s non-disabled people who are speaking about it. And it usually comes out negative.

For far too long, we’ve had people speaking on behalf of us. That’s not the voice of people with learning disabilities and what they talk about is not necessarily what people with learning disabilities want to talk about.

I think that the more people with learning disabilities speaking in the media, the better.

Speaking up in the media will help people with learning disabilities learn skills and it will make them more confident.

Speaking up in the media helped me get better and better – my confidence grew and I gained more self-esteem. I wasn’t afraid to speak up.

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Help us create Learning Disability England

We are working to create a new organisation called Learning Disability England.

Life for people with learning disabilities is not good at the moment and we need to do something new to try and change this.

Learning Disability England will bring together self-advocates, families and friends and organisations to create a strong voice for all of us.

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You can read Gary’s thoughts on why Learning Disability England is important here.

If you are a self-advocate with learning disabilities we want YOU to be involved.

We want you to tell us what you think about our ideas.

You can do that by filling out this online survey.

Or you can talk to us over the phone by calling Annie on 07780 707 577.

We only have until the end of March so make sure you tell us what you think before then!

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