Gary's Speech from Learning Disability Today

This year at Learning Disability Today LDE Co-Founder Gary Bourlet was asked to speak about Winterbourne 5 Years On and the Transforming Care Agenda. 

Here's Gary's speech from the day. 

Gary with LDE lifetime member Simon.

Hi everyone,

I’m Gary Bourlet, Co-Founder of Learning Disability England and I’ve been a self-advocate for over 30 years.

I want to talk to you about Winterbourne View.

What we saw happening at Winterbourne View hospital was terrible – people with learning disabilities were being abused.

When we watched the Panorama programme we all thought two things: 1 - this should never have happened in the first place and 2 – this should never be allowed to happen again.

Winterbourne View was so horrific that the abuse of people with learning disabilities should have stopped immediately. It should have been stamped out forever. But it wasn’t. 

Transforming Care was designed to help people with learning disabilities out of places like Winterbourne View and back into the community.

Transforming Care was supposed to give people with learning disabilities something better. It was supposed to create real change.  

What we wanted to see were people with learning disabilities being a valued part of their communities. With the opportunity to learn, work and live good, ordinary lives. 

We wanted, and still want, to see people with learning disabilities back in the community, being supported to live the lives they want, living independently.

Why? So people can become independent rather than dependant, build confidence and self-esteem in the community by making friends and also contributing to their community.

Living independently doesn’t mean doing everything by yourself, but rather having the support that they want and need.

After the Panorama programme there was Winterbourne View Concordat. The word Concordat was jargon, but it meant that there was a plan.
We thought Transforming Care would give people more freedom, more respect.

But we have not moved on properly. There was a plan and the plan looked great, but progress has been slow.

And actually, all the things we were promised after Winterbourne View are the things that we were already entitled to as human beings with human rights.

In the UN Convention on the Rights of Persons with Disabilities it is very clear that we have a right to a life. We have the right to have the same chances and rights to work as other people, have the best possible health, live in the community. Winterbourne View failed all these points.

The Human Rights Act made our rights very clear too. Again Winterbourne View failed to uphold these basic rights.

It’s clear what should be happening. But it isn’t happening because the government thinks more about value for money than it does about the lives of people like me – the lives of people with learning disabilities.

And the government isn’t even saving money. It’s ridiculous because modern-day institutions like Assessment & Treatment Units cost a lot of money to run.

People with Learning Disabilities and Families are included in Transforming Care and that’s great, but I feel this should have happened long ago.

People with learning disabilities and families are still fighting to see people with learning disabilities get out of hospitals and make sure we do not return to the past.

Still to this day we hear that professionals know best. But professionals haven’t shut down ATUs, they haven’t brought real change.

So - how do we really move forward and make sure we never have another Winterbourne View?

It’s difficult for people with learning disabilities and families to campaign alone and that’s why we need to come together alongside professionals. We are stronger and louder with one voice.

We need to employ people with learning disabilities and their families as quality checkers, to oversee services where they live so that they can advise these services in how they can do things better.

We need more Funding for help in the community like people having access to Learning disability Nurses.

We need to plan beyond people coming out of hospitals to make sure they have a good life once they get out. Even if people do get back into the community, it doesn’t stop there.

We need better benefits with less intrusive and more respectful assessments. We need more focus in supporting people to get Jobs and help with building careers.

We need to support people so that they can have a real social life because, as I always say, loneliness is a killer.

We need action now!

Because although there have been some changes since Winterbourne View, attitudes towards people with learning disabilities are still terrible.

We are still thought of as not important.

Last week was the Autumn Statement and social care wasn’t mentioned once. This was very disappointing.

To really move away from Winterbourne View we need to change people’s attitudes and come together to fight for the things that matter.

I will end this speech by encouraging you all to join Learning Disability England.

Join together with people with learning disabilities, families and professionals because we are stronger, louder, together!

Thank you.

Interview with Jackie Downer MBE

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so you can get to know them better! 

Here's our interview with Jackie Downer MBE. Jackie is an experienced and active self-advocate who is fantastic at challenging organisations to make sure they're actually making a difference for people with learning disabilities. 

How did you become a self advocate?

I wanted to learn to be able to speak up for myself as a person with learning disabilities and also for other disabled people. I used to work at a place called Lambeth Accord where they helped me to become a self advocate and also my support worker Linnett helped me.

If you could change one thing that would make life better for people with learning disabilities, what would it be?

I would like for people to listen to us and our needs. It would be nice if people changed their attitude towards people with learning disabilities. 

What needs to happen for people with learning disabilities to have good homes?

I live by myself but I would like it if I had nicer neighbours, a carer that would come and see me and also a safer community. As I am getting older it is harder for me to get up the stairs so a house that is easily accessible would be really helpful. I think people with learning disabilities need all the above as well. 

Why do you think it’s important for people with learning disabilities, families and organisations to work together?

I think it's important because it helps to support people like me. If we work together then I will know what I need help with, what kind of care I need or don't need anymore. Working together can improve my quality of care and life. 

If you could say one thing to all of our member organisations, what would it be?

Keep people with disabilities in the know and don't exclude us.

What do you think is the biggest challenge for LDE?

Getting members.

What are your hopes for LDE? 

I hope that they listen to the members needs. I hope that they can really speak for people with learning disabilities and make a change!

What’s your advice to other self-advocates who want to speak up?

I would say to try a self advocacy group to help with getting confidence. Have good people around you that can help you when you ever feel scared. 

Tell us about a time when you’ve spoken up and something has changed. 

One time I spoke about the need of having a women’s group, so that women could support each other and maybe do things they wanted to do.  The group was started and  funded and it really helped some women with disabilities to develop their own voice and indolence.

Interview with LDE Lifetime Member Jenny Carter

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so you can get to know them better! 

Here's our second interview with Jenny Carter. Jenny is an active self-advocate in Wirral and Director of Together All Are Able. 

One of the reasons Jenny was made a lifetime member of LDE was for her work on social media where she speaks up and uses her platform to really challenge organisations. 

How did you become a self-advocate?

I became a self advocate by doing Partners in Policymaking course.

If you could change one thing that would make life better for people with learning disabilities, what would it be? 

I would make it so that people are treated fairly have the same access to everything that others do.

What needs to happen for people with learning disabilities to have good homes?

More affordable housing and understanding landlords.

What does supported living mean to you?

It means that people have better lives and are able to create and lead their own support with the help they need.

If you could say one thing to all of our member organisations, what would it be? 

Work with and involve people with Learning Disabilities. Support self advocacy and help us to have a life.

What do you think is the biggest challenge for LDE? 

Funding, lack of access to the community support and communication.

What are your hopes for LDE? 

That we are able to lead and create our own support so we can have a good life.

What’s your advice to other self-advocates who want to speak up?

Keep speaking up, work with us and don't have a go at each other.

Tell us about a time when you’ve spoken up and something has changed.

The service model for the Wirral and Cheshire delivery hub (which is part of Transforming Care) is now being co-produced with us.

Interview with Shaun Webster MBE

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so we can get to know them better! 

Here's our first interview with Shaun Webster MBE, International Project Worker at CHANGE. 

Shaun at Conservative Party Conference in 2014 (with Gary in the background!) 

How did you become a self-advocate?

Before I because a self-advocate I was working in another job and my friend told me that there was a job going at CHANGE. Because I live in a KeyRing network I had experience promoting KeyRing to different people. Because I had experience doing that, that helped me to get the job at CHANGE.

If you could change one thing that would make life better for people with learning disabilities, what would it be? 

Attitudes. Because some people and the media think people with learning disabilities are lazy or spongers but we’re not. We’re hard-working people and we want the opportunity to have a job like everybody else. And I think people with learning disabilities should maybe go to schools and talk about themselves – we’re just people like everybody else. We’ve got jobs, we’re living on our own, we’re part of the community. We’re human beings just like you – we’re not different. 

What needs to happen for people with learning disabilities to have good homes?

What we need is a choice of what home we get. We need to be included in deciding what kind of home we want, where we want to live – because we want to have a choice. If you’ve got different disability needs or need support then you need these things to help you live independently.

If you need support workers you need the opportunity to choose your support worker and they need to listen to you and make sure you’re included in everything. 

What does supported living mean to you?

I live in a KeyRing network. I’ve been living with KeyRing for over 15 years. At first I had a lot of support. I used to live in a flat before that – my brother used to live with me but he did everything for me. My brother wasn’t being bad; he just thought I would struggle with things. Moving to KeyRing was a big change. I wasn’t very independent and what changed that was a fantastic support worker who did an action plan for me about things I needed support on. Over time I became more confident in doing them for myself. Then I supported other people to do these things when they moved into KeyRing, like peer support.  And then the people I supported could support me too! It was a win win! 

I’m supported on my terms. When I need support I get it and when I don’t I don’t 

Why do you think it’s important for people with learning disabilities, families and organisations to work together? 

I think it’s very important to include families because I feel sometimes families get left out. Families need to know what’s happening so they can support people. But sometimes they get forgotten. 

If you could say one thing to all of our member organisations, what would it be? 

The one thing is always include people with learning disabilities. Make sure people with learning disabilities are employed and make sure they are in control. And not just that, make sure they are living independently and have control over their lives. Companies need to think about that. 

Employment and living independently are linked together. Being employed gives you power. And when people are employed and live independently they can inspire other. 

What do you think is the biggest challenge for LDE? 

There are two actually. Attitudes and money. Attitudes and funding can make it difficult for people with learning disabilities to live independently and be employed. 

What are your hopes for LDE? 

My hopes are people with learning disabilities will be able to be more a part of the community, be treated the same, be respected and to get proper paid jobs, not tokenistic jobs. 

I think schools need to take people with learning disabilities more seriously if people with learning disabilities are going to achieve decent jobs. Schools don’t ask people with learning disabilities what jobs they want. I think people like myself who have jobs could go into schools and talk about that. Be role models.

Another barrier is the media. I hope LDE can show the media that people with learning disabilities are not benefit scroungers. We want people to stop feeling sorry for us. 

 What’s your advice to other self-advocates who want to speak up?

I’m doing a project at the moment about mentoring. Mentoring is to improve people with learning disabilities’ confidence in speaking up for themselves. People should think about doing mentoring – it will give people like myself a real opportunity to speak up. It builds their confidence, self-belief, gives them a voice and helps them to be a part of the workplace.

Tell us about a time when you’ve spoken up and something has changed.

I was in London earlier this year and I had a meeting with chemists – I did a talk about having a bad experience with chemists. When I went to pick up my medication it was new and I couldn’t read the information. I asked the person at the desk to read the info for me and they said no. they were very rude to me and I had to go and see the nurse. 

I talked about at this meeting about making information more accessible for people with learning disabilities and I felt this made a difference. When I use my life experience it breaks down barriers. And then people do take notice.

Conservative Party Conference

This year representatives from Learning Disability England attended Labour and Conservative party conferences. You can read our thoughts on Labour conference here. 

We asked Gary, Sheila and Harry to talk a bit about their experiences of Conservative Party Conference. Here's what they said!

Gary Bourlet - self-advocate representative

It was good that people with Learning Disabilities and parent representatives where there. There were also two academic students who attended the conference with us.

I've been to these party political conferences before. We had good meetings with Dominic Grieve QC and Liberty - they knew all the legal stuff, especially on things like Human and Civil rights.

The down side was that when we went to fringe meetings it was hard to get a word in edge ways.

There was a lot of questions I wanted answers to, there never seemed to be enough time though, and sometimes the panel did not really take on my questions. It would have been great to have more people with learning disabilities and families at these party political conferences - it would be great to be there big in numbers.

I have already been to 1 Labour and 2 Conservative conferences in two years. In the future I would love to go to the other minority party conferences as this will give me an idea what they are saying about people with Learning Disabilities.

Sheila Moorcroft - family carer representative 

I am a family member of LDE and part of LDE’s steering group. This was my first ever party conference – I went to the Tory party conference.

The overriding impression was the sheer scale of the event: the numbers of people, the numbers of fringe events over and above the main political speeches. Annie at LDE had very kindly pointed out a few meetings that would be relevant for us to attend, and set up meetings with specific people; otherwise we would have faced a mammoth task sifting through the options. It made me realise just how difficult it must be to make your way in politics, and navigate the system. And the energy and stamina that you need.

The meeting we had with Liberty was perhaps the stand out moment. It provided an important starting point for new opportunities to work together, and potentially raise important issues such as the care, or lack of it, of people with learning difficulties in the NHS, as illustrated by the recent events at Southern Health.

I certainly think that it is important for LDE to be represented and would encourage family members and self-advocates to go to the party conferences; but those unused to networking and talking to strangers perhaps need more help and preparation. We also often found ourselves in fringe meetings talking with people who already knew and understood many of the issues facing people with Learning Difficulties; getting the message across to a wider audience is more difficult. Simply asking a single question in a meeting is not enough; it felt much more effective when we were able to talk one on one with people at the end of sessions.

Harry Hayton-Isles - student volunteer

Earlier this month I was lucky enough to attend the Tory Conference with LDE. It was a fascinating insight into a political culture I've had very little experience with and despite drawing some worrying conclusions from the experience, I highly recommend any other students to take part. The first thing that struck me is the divisions in the party on the subjects of disability and social care. There was a distinct feeling amongst representatives of local government that the cuts to services and current set of welfare assessments were failing families and people with disabilities. Even going as far as to refer to the cabinet, and other Westminster conservatives, as if they were from a different party entirely. I found this a particularly interesting representation of the under reported tensions in the party, while also presenting a far less black and white ideological image than I had imagined previously.

Having said that, this does seem to raise a bit of a paradox in that while the cuts are not supported, seemingly neither is real investment in services. Furthermore  there seemed often to be a hushed reference to privatisation as a way of solving this, something that has a track record of continually not solving these problems. But there are some real champions surrounding disability, our meetings Dominic Grieve and Ian Birrell showed this. But there still seems to be a lack of interest on a cross party basis, stopping real change from manifesting. MP's rarely turned up to the panels we attended, notably Jeremy Hunt not turning up to any.  This gave the proceedings outside of our personal meetings, a kind of hollowness that fundamentally gave the impression that whatever panel members feelings on the issues, the real decisions would be made elsewhere. This was a stark difference from the kind of engagement we found at the Labour conference from both MPs and Shadow Cabinet.

Another key difference I found was the serious lack of self-advocates, people with disabilities and families at the conference. People who should be an integral part of formulating policy and discussing issues. This lack of dialogue is something I found very worrying considering how much work is needed on the current policy presented by the party.  What is worth mentioning as well, is a great meeting we had with Liberty who seemed keen to engage with a number of issues concerning the treatment of people with learning disabilities. I thoroughly recommend any students to get involve in future as it was great opportunity, an exciting inside look on politics at it's most extravagant. Although I think Ben mentioned this, it is worth reiterating how helpful having a focus and purpose is in such a huge event.  Subsequently this also educated me on the importance of the work LDE does and I hope to get involved again.

Thanks to Annie, Alicia, Sheila, Sui-Ling, Martin, Paula, Gary and everyone at LDE. Had a great time!

Labour Party Conference

This year representatives from Learning Disability England attended Labour and Conservative party conferences. We wanted to go because we think that it's important for people with learning disabilities and their families to be involved in political discussions and decision-making. As a campaigning organisation, we wanted to get a feel for the conferences and work out how we can get the most out of them in the future. 

We sent a self-advocate representative, a family representative and a member of staff to each conference. We also had two student volunteers with us which we found really exciting. Politics students are going to be the politicians of tomorrow and we think it's really important to get them engaged in learning disability rights activism. 

We asked Sui-Ling, Paula and Ben to talk a bit about their experiences of Labour Conference. Here's what they said:

Sui-Ling Tang, self-advocate representative 

How was the conference for you as a self-advocate?

“It was the first conference I have been to. It was really good but they were very long days with lots of meetings.”

What was the best bit?

“My chat with Debbie Abrahams.”

Were there any challenges or any bits you found frustrating?

“Going to different places to meet everyone. It was difficult to understand what people were talking about. I would like to see Easy Read information available, that would be really good.”

Would you encourage other self-advocates to go?

“ Yes, people have some great ideas they could share.”

Why do you think it's important for LDE to attend the conferences?

“It is important for people to speak up and for people with a learning disability to be heard.”

Paula Edmondson, family carer representative 

Being the Family representative for LDE at the Labour Party Conference was such a great opportunity in so many ways: I was really pleased to have been asked and that I said yes! 

As a group we worked out the best places and meetings for us to be and the most relevant questions and points that needed to be asked and made - then we set about doing just that.

Intriguingly, the thing that stands out for me the most, is how different it feels to raise issues of massive concern with politicians than it does to try doing the very same with paid people operating within our health and social care systems. With no apparent need to build walls of defence, I was able to enjoy, at the very least, feeling as though we had been listened to with some level of respect by people who may (or may not) at some point in the future, be able to participate in making a positive difference as a result of what they heard.  One can hope eh?

Certainly none of us in the LDE group held back from joining in- we did ourselves very proud indeed!  And we can definitely be assured that we made a memorable impression with some  - for as I paid for my parking ticket Wednesday afternoon I was cheerfully greeted by Debbie Abrahams busy on her way to the closing speeches. But not too busy to stop and say ‘Hi Paula: it was really good to meet you, Suiling and the rest of the group and I hope all goes well for you!’ 

Ben Leonard, student volunteer 

At the end of September, I attended the Labour Party conference with Learning Disability England as a student volunteer. The media coverage of the conference was almost entirely focussed on the faction fighting within the party. However, as an LDE volunteer attending fringe events with a focus on health and social care, what struck me was the number of hard-working, passionate and inspirational campaigners who have been fighting some of the most difficult struggles there is for decades, coming together to work out how to change society for the better.

For me, the best bits were the Disability Labour fringe, the Socialist Health Association fringe and the Autism and Neurodiversity Manifesto Launch. What was special about these was the emphasis placed on centering the experiences and ideas of those who are most affected by government policy: people with disabilities, their carers, and professionals in the sector. It was also pleasing how the Shadow Ministers seemed to care even when the cameras weren’t running. For example, John McDonnell took time out of his day to travel away from the conference centre to appear at the unglamorous Autism and Neurodiversity Manifesto Launch on the hectic last day of the conference, not long before the Leader’s speech. Debbie Abrahams is also worth a mention, for taking the time to meet LDE and then pledging the next day to scrap the Work Capability Assessments.

What was frustrating was the disconnect between the passionate and principled campaigners we were speaking with, and the suited and booted party machinery at the conference centre. One wonders how the energies and policies of the people at the grassroots can be translated into policy at the level of government, when many seemed more interested in networking and fighting internal battles than anything else.

I would encourage any Politics student to volunteer at a party conference with LDE if they get the chance. Not only do you get to be in the thick of it for a week, going with LDE means you go with a focus and a purpose. If I had gone as an individual, a party member or a journalist, I would have never got the in-depth insight into how a specific area of policy works in and around a party that I got by going with LDE. 

#CaminoLB :the JusticeforLB Quilt, Postcards and Kindness

#JusticeforLB quilt

Earlier this week I went to collect the #JusticeforLB crew from the ferry terminal in Santander. Sara Ryan, George Julian, John Williams and Dave Griffiths. They are here to walk part of the Camino de Santiago in memory of Connor Sparrowhawk and bring the JusticeforLB quilt, LBbus and Postcards of Awesome to Spain and exhibit it near my home town in Aviles for International Day of Disabled People- I am joining them for the last 5 days of the #CaminoLB along with several others including some of the My Life, My Choice team.

This is such a big deal for me, I am a long time JusticeforLBer and I can’t count the times I have cried at the injustice of how Connor Sparrowhawk and his family have been treated, raged at the behaviour of Southern Health and felt the desperation of so many people with learning disabilities and families experience in our so called civilised society. So much emotion over the last few years that has driven everything I do in my work, not to mention my growing vocabulary of swear words. Walking with people I admire and being the caretaker of the quilt, the LBbus and the Postcards of Awesome feels such a privilege.

I’ve seen so many pictures of the JusticeforLB quilt but have never actually seen or touched it and now it’s here with me wrapped up in the corner of my office along with a bag and envelope filled with the postcards whilst the cardboard bus is walked along the north coast of Spain. I knew that having the quilt would fill me with all sorts of joy and sadness but I was unprepared for the Postcards of Awesome.

Hundreds of postcards sat next to me in an open bag so I had to sneak a look at one, then two, then more. Such care in the writing of those postcards to a grieving family, such empathy from people with learning disabilities, autism and families who know what it feels to be ‘the other’, such warmth from complete strangers. I have been moved in a way that I find hard to put into words and I think it just comes down to good old fashioned kindness. 

People with learning disabilities and their families are too often surrounded by transactional relationships, judgements, meaningless bureaucracy, laziness and a lack of care. Our processes and relationships have become so impersonal and mechanical that when we see such kindness, it stands out a mile.

On the way to the ferry, I had a call from one of our family members who we’ve helped to sort out housing for her daughter with learning disabilities. She was working with a provider who treated the process of setting up housing and support like a transactional process, they treated the families involved as irrelevant to the process, were shoddy and delayed things so much that the families had to go to another provider, one of our members, Choice Support. The mothers exact words were ‘ with ****** (former provider) it was all about money, money, money but with Choice Support, I have just felt they really cared” she went on to tell me about how kind, human and efficient the team from Choice Support are. I’m going to appreciate and highlight these acts of kindness, respect and dedication to doing what we are paid to do well more often.

I’m looking forward to doing the #CaminoLB from tomorrow and will be sharing the highs, lows and conversations we have. If you want to sponsor me as I raise some money for media training for people with learning disabilities, you can do so here

#ImWithSam

Learning Disability England welcomes and supports the launch of the Dimensions campaign #ImWithSam.

#ImWithSam is about tackling Hate Crime that people with learning disabilities experience every day.  Hate Crime is:

• Verbal abuse
• Physical abuse
• Theft
• Intimidation
• Property damage
• Someone (you do or do not know) getting you to do something you don't want to do

73% of people with learning disabilities and autism have experienced hate crime.

Too many people with learning disabilities suffer hate crime simply because of their disability. Sam could be me or you, Sam could be your child, your sibling, your parent. Sam could be the person you care for, your colleague, your friend.

Gary Bourlet, Co-Founder of Learning Disability England says 'enough is enough - we need to end hate crime'. 

What the campaign wants to see:

• Separate disability hate statistics for learning disability, autism and other disabilities.
• A change in the law to make disability hate a crime online too.
• The Department of Education to adapt resources to better support all primary and secondary schools with positive messages around difference.
• Manufacturers to incorporate greater learning disability sensitivity into toys, games and other children’s entertainment.
• The Department of Health to develop simple guidance to help families and support workers identify and manage cases of hate crime.
• The Crown Prosecution Service to improve investigation protocols within the criminal justice system in situations where there is a learning disabled victim.
• The Home Office to improve resources and training for police officers and others to help them when receiving a report of hate crime from a person with a learning disability or autism, including funding self-advocates to provide specialist victim support.
• Together, we and our campaign partners, will evaluate the effectiveness of new coercive behaviour legislation on people with learning disabilities or autism, leading to specific change recommendations and/or a green paper recommendation on stronger legislation to protect  people from mate crime.

Learning Disability England will support Dimensions to achieve these aims by working with Dimensions and other partners to help the organisations responsible put these things in place.

Simon Cramp, self-advocate and Lifetime Member of Learning Disability England says:

"My main recollection of school life was being bewildered and bullied. I want to live in a society where it is unacceptable for the strong to belittle, bully and pick on the less able, and we must each of us stand up to those bullies. 

The law is there to protect all citizens but the implementation is key. The #ImWithSam campaign says how we can do this and we should all support it."

To find out more about the campaign click here. 

Mendip House - National Autistic Society

In August, the National Autistic Society had a CQC report of the service, Mendip House published in the media that said the service was unsatisfactory. Some of our family members asked us what we were going to do about this. The National Autistic Society has been a long term member of LDE (since when we were Housing Options, and then Housing & Support Alliance).

This is new ground for us as we have always been mainly a membership organisation for professional organisations.  In the past if one of our members failed people with learning disabilities, we would have contacted them privately and offered to help them to improve. We know that even good organisations make mistakes and we have always tried to take a helpful approach with our members and assume that they want to improve and support people with learning disabilities to lead good lives.

We facilitate the Driving Up Quality Code to enable providers to be transparent about what they do well and need to work on and we encourage all of our members to sign up to this code and publish self-assessments where they involve the people they support, families, board members and staff.  Some providers don’t do this self-assessment so we take them off the website. We have had to remove 2 providers (despite having done self-assessments) because of ongoing poor CQC inspection results and a clear inability to improve their services.

Our members are now also people with learning disabilities and families and we have a different responsibility to those members. One of the main ways we agreed to work together was to put people with learning disabilities at the centre of everything we do and be challenging when people are treated badly or discriminated against. This may sometimes mean that we have to challenge our organisational members. We will always do this in the spirit of transparency and a genuine desire to talk openly about the problems our members experience and how we can help to solve some of those problems.

We wrote to the National Autistic Society to tell them that some of our members were worried about their services - you can read our letter here. We asked them to respond to our members. They have responded - you can read their response here.  

The NAS will host an event in December 2016 to share what they have found about what went wrong and will invite some of our members, including self-advocates, families, providers and commissioners to come together and reflect on what went wrong, hear from other provider members, self-advocates, families and commissioners about their experience and talk about how we can make services better together. We will publish a report on what happens in that meeting.

We know that it can be challenging to bring different groups of people together to debate very sensitive issues, but we think that the only way forward is to be honest and open with each other. It is sad and worrying to see what happens to people with learning disabilities when their support organisation fails them but we welcome and support the NAS who have given us this opportunity to attempt to genuinely understand what has gone wrong and what we need to do to make things right. We hope that this process can also help other organisations. 

Statement on the Resignation of Katrina Percy

Learning Disability England is relieved to hear the news that Katrina Percy has resigned from her post as CEO of Southern Health Trust. The management team at Southern Health has presided over continual failings in delivery of care and this has been highlighted frequently in CQC and independent reports such as Mazars. We think that her resignation is long overdue and that the remaining management team should take a look at themselves and do what is respectful and just for all the people they have failed.

We are angry to see that Katrina Percy will continue to work as a consultant for Southern Health and take the same salary that she got as a CEO. This is wrong and makes her resignation a pretence. Her statement that she is leaving because of ‘media pressure’ is a denial that she was in charge of an organisation that continues to fail people with learning disabilities.

NHS Improvement say that to pay a CEO salary to do a lesser job is best value for money. They have not explained how they have come to that decision and they should explain. At a time when people with learning disabilities are told that there is not enough money for the support they need and have a right to, this is insulting. Katrina Percy (and any other manager that can’t do their job well) should not be rewarded for their failure.

LDE member and family carer Dr Katherine Runswick-Cole says:

“Why does the Ofsted chair, David Hoare, who said rude things about people in the Isle of Wight have to go straight away with no pay off and Katrina Percy doesn't.  Are the feelings of non-disabled people on the Isle of Wight more important than the lives of people with learning disabilities?  I genuinely do not understand why it has happened that way.”

LDE co-founder Gary Bourlet says:

"Katrina Percy has resigned but she's going straight into another job. She has not been punished, she should be taking responsibility. She'll have the same salary - she'll be alright but a lot of people have died. Others have to live the rest of their lives with that. This shows us just how bad attitudes towards people with learning disabilities are."

At Learning Disability England, we are asking our MPs to demand an inquiry into how Katrina Percy can still be paid the same as a CEO. We are also writing to NHS Improvement to ask how they made the decision that paying Katrina Percy the same was best value for money.

If you are angry too, we suggest that you write to your MP – you can find more information about this here. If you want NHS Improvement to explain, you can ask them here.