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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

Simon launch

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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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

megaphone without border

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.

LDE venn diagram

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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Response to the Mazars Report

Today the Mazars report came out.

The report is an investigation into the deaths of people with learning disabilities who were under the care of Southern Health Trust.

You can read the Easy Read version of the report here.

This is Gary Bourlet’s response to the report.



Reading about the deaths of people under the care of Southern Health Trust made me feel very sad.

Somehow you go past being angry to being more sad.

Our condolences go out to all the families who have been affected by this.

There should be a memorial for people who’ve died in these places.


What the report says


The report found only 1 per cent of deaths in learning disability services were investigated.

I think this is wrong.

It’s important for organisations like Southern Health to be better because they’re supposed to be looking after people.

It’s also important that when organisations like Southern Health do things wrong, people should feel able to speak out about them.

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Learning Disability England

Gary Bourlet explains what Learning Disability England is and why he thinks we should create this new organisation. 

Learning Disability England is a coming-together of people with learning disabilities, their families and organisations.

People First England is working with Housing & Support Alliance to create this new organisation.

H&SA came and spoke to me in 2012 and said that they wanted to help make People First England happen. They wanted to help make it a success.

Different charities and organisations and individuals put in money to make People First England happen.

We wanted People First England to become a big independent organisation but this couldn’t happen because we didn’t have enough money.

People First England continued as a project under the Housing & Support Alliance umbrella.

There is an Australian campaign called Every Australian Counts.

We decided that we wanted to bring this model to England.

It’s about self-advocates, families and organisations coming together but still having their own identity.

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Response to ‘Building the Right Support’

NHS England recently published their plans to change their services in England.

These plans are called ‘Building the Right Support’.

You can read an Easy Read version of the plans here.

Here’s what People First England had to say about the plans.

What we like.

The plans look great. But It feels like we have been here before with Care in the Community, Valuing People and the Winterbourne View Concordat. We have the right laws in place and we have the UN Convention on the Rights of Disabled People. Institutions have been closing all over the world.

We like the way that people with learning disabilities and families are included in the plan. There are people and families fighting to get out of hospital now and professionals are ignoring them and think they know best.

We like the way they will employ people with learning disabilities and families as Quality Checkers.

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People First England is Changing!

We’re very excited to announce that People First England will soon be changing. We are coming together with other self-advocates, families and supporters to form one big organisation which will be led by people with learning disabilities. This is because we believe that we are more powerful together.

We are working with the charity Housing & Support Alliance in order to achieve this goal. Housing & Support Alliance agrees with us that services which support people with learning disabilities should be led by people with learning disabilities.

We will keep updating this website so that you can find out what we’re up to. We will also be asking people what they think of our new plans so keep an eye out for that!

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Response to the No Right Ignored Green Paper

This blog post was written by Kaliya Franklin and Gary Bourlet and was originally published on 01.06.15.

Earlier this year the Coalition government published a Green Paper.

The easy read version of the Green Paper was called ‘Making Rights Better and Listening To People’.

You can read it here.

A Green Paper is where the government talk about ideas which they think might help people if they were law.

A consultation is where the government ask people to tell them what they think about those ideas.

People First England did a detailed consultation response to this Green Paper.

This is what we think…

No Voice Unheard, No Right Ignored – People First England’s response to Easy Read Consultation

Our response has been written using only the easy read version of the information. We chose to do this because we believe anything concerning people with learning disabilities should be fully accessible to people with learning disabilities.

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Bloody Skegness! Blogging Against Disablism Day #BADD2015

This blog post was written by Shaun Webster, supported by Kaliya Franklin and was originally published on 01.05.15.

When I was a young adult..

At first I was fairly scared, because I didn’t know what I wanted to do because I couldn’t read or write. My special school didn’t teach me to read and write, they only found out I was dyslexic 2 weeks before I left school. I be honest, I didn’t know what I wanted to do when I left school, because nobody ever asked me what I wanted to do. The only thing I could do was retail work.

I went to college first and I didn’t enjoy it because I couldn’t understand things right because of my reading and writing. Then I went on a YTS scheme and they put me on a retail course, it was very difficult to do it. I didn’t have proper support for my reading and writing.

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A Response to the National Audit Office Report

This blog post was written by Gary Bourlet and was originally published on 03.02.15.

People First England responded to the HSCIC Learning Disability Census. Here is what we said: 

1. The Winterbourne programme has not worked and we are still being treated like third class citizens

The Winterbourne programme has been going for more than 3 years. It is high profile and there is a minister responsible for it but it hasn’t changed anything much. They have said the right things but whatever is happening they are not making a difference. None of this is new. People with learning disabilities continue to be treated like 3rd class citizens, which has been going on for decades.  Until society treats us the same, nothing will change.

We think it has been a waste of taxpayers money.  It is not money well spent. There has been too much bureaucracy, too many people in offices doing too much paperwork but not enough work on the ground.

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Connor Sparrowhawk – Gary’s video statement transcript

What happened to Connor was dreadful, very sad. A young man who was looking forward to the rest of his life died in a unit without any support whilst he was in there. He should’ve had the right support at the right time. He was used as, just as a patient, and not as Connor. Connor should’ve had his own help and own support and his own needs and wants needed. This is happening not just to Connor but to other people who have been in units before. And these units are stemmed from big institutions, and asylums which we would like to see closed. And we want to see these big institutions and asylums closed so people like Connor could be part of society and be part of the community we all want to live in.

The units and day centres like that are actually like workhouses and they were part of big institutions and asylums since the Victorian times.

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Gary’s Speech #HSA2014

Three score years and nine ago the welfare state was formed. A vision of Britain as Jerusalem for all, a beacon of hope in a country battered and bruised by the ravages of war. Principles so important that despite the crippling debt of the post war years, our grandfathers and grandmothers made sure their dream of a society caring for all was a priority.

Despite two world wars and countless people disabled in the pursuit of justice it took another 25 years for disabled people to begin our own long march to freedom..

And so we’ve come here today to dramatise a shameful condition. A condition which means that our people, our loved ones are still not free.

Because 7 decades later, not all disabled people are free. 7 decades later, the lives of those with learning disabilities are still crippled by the manacles of segregation and the chains of discrimination.

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People First England’s view on the Assisted Dying Bill (Plain English)

Today a Bill will be talked about in the House of Lords. A Bill is something politician’s talk about. 

They have a vote to see what they all think.

If they think the Bill is a good thing it becomes law.

A Bill has to be voted on in the House of Commons and The House of Lords before it can be law.

The House of Commons is where the MP’s talk about things.

MP’s are people we vote for in general elections.

They talk about what matters to the people who elect them.

They shout and argue a lot. They think that makes them look good on TV.

The House of Lords are people like bishops, doctors or campaigners.

The talk more carefully about things.

Today’s talk is about something called assisted dying.

Assisted is when someone needs to help you do something.

Some disabled people want help to die.

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What would you ask politicians? (Plain English)

We have 5 main political parties in the UK. They are: Conservative, Labour, Liberal Democrat, Green, UKIP.

A political party is a group of people that share beliefs. They want to win the election.

Winning the election means that party get to decide on the future laws in our country.

Every year the political parties have a conference.

People go to these conferences to talk to the political parties about things that matter to them.

These are things like crime, or the NHS.

We had a competition for self advocates to go to a political party conference.

Lots of people entered.

They were all really good.

It was very difficult for us to choose just 2 people.

We wanted everyone to have the chance to go!

We had enough money for 1 person to go to Conservative conference with us and 1 person to go to Labour.

The winners were Shaun Webster and Vicky Hiles.

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What we think about Richard Dawkins (Plain English)

Richard Dawkins is a philosopher and atheist.

Philosopher means he spends time thinking about stuff.

Atheist means he does not believe in any god.

He is also a scientist. This means he is supposed to think about evidence.

Evidence means things that are facts not opinions.

Facts are things that we know for sure. Like the sea has salt in it.

Opinions are what we think about stuff. They can’t be right or wrong because they are not facts.

Richard Dawkins said that if a woman knows her baby has Down’s Syndrome when she is pregnant that she should have an abortion.

An abortion is when doctors help a woman to end her pregnancy.

Doctors often tell women to have an abortion if they think their baby is disabled.

In the UK most babies who would be born with Down’s Syndrome are aborted.

Richard Dawkins thinks this is right.

He says people with Down’s Syndrome suffer.

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Everything You Need To Know About Voting

On May 14th we had a ‘together day’ with Inclusion North. Inclusion North invited us to go along so that people could ask questions about People First England.

Gary and I explained that one of the important things we want to do with People First England is to ‘turn up the volume’ on the great work already being done by self advocates, local groups and charities. Too often local groups and especially the big charities only talk about their own good work and only share that work with their supporters.

We think that by sharing the good news about everyone’s projects that they will benefit more people.

We talked about lots of different projects the bigger charities are doing to support people to vote next year in 2015.

After the day we put together an easy read guide to all these projects and how you can get them to come along to your local group to put on an event, or how to get the information packs for yourself or your local group to use.

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Politics For All – Political Party Conference Competition

If you are a person with a learning disabilities and you are interested in politics, well this is for you!

You do not have be part of any Self Advocacy group or organisation or charity body, you can be an independent person as well. You don’t have to use services and you don’t have to live in an urban area, you could come from a rural area. The competition is open to everyone with a learning disability who is interested in politics. We hope lots of you will apply!

Follow this link to read FE – Advert for Party Conference Applications (Apr 14) on the Scribd website

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Kali’s Friday Feedback

It has been a very busy week for us at People First England. I started work properly last week – we have hit the ground rolling! Working from home is great but it relies on technology. It’s been very difficult this week without a working phone – it’s a good job I have good neighbours who lent me their broadband password.

This week was also the start of the #JusticeForLB campaign. Gary and I made a video together about what happened to Connor Sparrowhawk (Connor’s nickname was LB, Laughing Boy). Gary is a very good speaker, I need to learn to be a better video editor to keep up with him!

We have also been planning our media training for self advocates and the competition for self advocates to go to party political conferences and campaign on the issues they choose.

We had some very exciting news about a project we are working on with United Response.

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Gary’s Friday Feedback

Yesterday I went to London with Anna. Anna is my new support worker/job coach through Access to Work.

The meeting was in the afternoon near St Pancras train station. The meeting was about the NHS constitution. There was a group of us with learning disabilities there to talk about an Easy Read version. We made some changes to it for staff and patients.

The final version will be available later in the year. We will be able to share it with you all then. Anna made some notes so I can remember all the details to share later.

It was a really good day and brilliant to be there for People First England.

Gary Bourlet

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Connor Sparrowhawk Report – Easy Read Version

Earlier this week Gary and I wrote a statement from People First England about the preventable death of Connor Sparrowhawk, known online as ‘LB’.

Lots of people are helping Sara, Connor’s mum to campaign for #JusticeForLB and better lives for all people with learning disabilities.

Some are tweeting, some are doing research and sharing information.

The official report into Connor’s death is difficult to read and full of jargon.

Nell Munro has written an easy read version of the report.

You can read it here.

It will be updated with pictures as well as words soon.

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Statement on the preventable death of Connor Sparrowhawk #JusticeforLB

On July 4th 2013 18 year old Connor (known online as LB ‘Laughing Boy’) drowned in a bath whilst in the ‘care’ of a specialist NHS Assessment and Treatment Unit (ATU) run by Southern Health NHS Foundation Trust. Connor had Klinefelter Syndrome, which meant he had epilepsy and learning disabilities. Yesterday’s independent investigation report found that Connor’s death was preventable.

Connor had been in the ATU for 15 weeks. The average cost of a placement in an ATU is £3500 per week, or £182,000 per year. Connor’s stay cost approximately £52,000 in taxpayer’s funds. Despite the enormous sums of money involved the report reveals a catalogue of failings; there was no assessment made of Connor’s lifelong epilepsy, concerns raised by Connor’s mother were ignored, Connor’s epilepsy medication was not always available meaning his mother had to bring in supplies from home and a culture of ‘buck passing’ existed in the unit.

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People First England in Learning Disability Today

There is an article about People First England in Learning Disability Today:

PFE’s first two workers are Gary Bourlet, a self-advocate with learning disabilities who came up with the idea and has been campaigning its creation, and Kaliya Franklin, a disability campaigner and author of the Benefit Scrounging Scum blog.

Since launching, the response to PFE from the learning disability community has been “overwhelmingly positive,” according to Franklin. “We have had lots of offers of support, encouragement and interest in working with PFE,” she added.

“We are talking to all sorts of different charities, disabled people’s groups and individuals about what we all think needs to happen with PFE.”

Media training

One area that PFE thinks is particularly important is training people with learning disabilities to be speakers to the media. “We think that having people with learning disabilities speaking for themselves in the media is vital – there are physically disabled people we can think of with comedy shows, parts in soap operas or who appear to give their views on important news stories,” said Franklin.

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Just a Beginning (Plain English)

This is the People First England website.

It’s just a beginning. It will get better.

But we must start somewhere and we must start NOW.

In 2015 there will be an election. We have just over one year to talk to politicians, talk to the public, let people know what matters to people with learning disabilities.

We cannot wait to act.

Over the next few days and weeks you will find more information on this website. Ways you can get in touch and get involved.

We want to work with everyone:

1. To support you to be heard in your local community.

2. To get the real voice of people with learning disabilities heard – loud and clear – in our country.

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