Sharing Self-Advocacy Best Practice

On 14th July we held our first Self-Advocacy: Sharing Best Practice session.

Self-Advocacy groups across the country are leading the way on important work.


We know that everyone is often so busy they don’t get to share their work.

We want to help connect people and them work together.



In this meeting three self-advocacy groups shared projects that they are proud of.

The groups told everyone what their project was about and why it’s important.

These sessions are funded by RTR.




Dorset People First spoke about their women’s group
Jump to their section


Inclusion Gloucestershire talked about engaging with health
Jump to their section


People First Forum talked about their Mix It Up DJ Project
Jump to their section


You can find the contact details for each group in their presentation





People First Dorset spoke first.



Kerry and Mark told us about their women’s sessions.

They told us the groups were important because they helped people be more confident.

They also helped people learn about women’s health issues


You can download the presentation here

You can watch their presentation here



Inclusion Gloucestershire presented next.


Sammy and Rosie talked about how they are engaging with health.

They talk about setting up a user-led group.

The group thinks about health messages and how to help more people get involved in health.


You can download the presentation here

You can watch their presentation here




People First Forum were our final speakers.


Daniel, Emily and Amanda told us about their Mix It Up DJ Project.

The project started small with a few people learning to be DJs.

The group now perform at festivals.


You can download the presentation here

You can watch their presentation here




We are planning another one of these sessions.



Please drop Rachael an email if you would like to be put on the list for more information.

Good Lives 2020

What does a Good Life for people with a learning disability look like in this new decade?

Learning Disability England has started some work with people, groups and organisations to talk about shared action on what we know people with learning disabilities want so they can live a good life.

There has been lots of research over the years and we believe the time has come to take action together. We believe the power of change lies in you, our membership, talking and working together to work out what you agree on and can take action on together.

The aim is to get shared actions for change that will lead to more people having a good life.

The changes could be at a national or local government policy level or things other organisations can do

This must be a plan everyone can get involved in and feel part of. We think it is really important that self advocates – people with a learning disability – lead this work.

This must not be a plan only for Learning Disability England but something everyone can use.


Why we are doing this?


We are doing this because people have told us there needs to be more joined up action – people working together – to make a real difference.
Lots of people told us they want to work with other people or groups to change things.


What Learning Disability England will do


We will help bring people together, connect ideas or pieces of work.


Self Advocates Meeting on 19th February 2020


We started by asking some people with learning disabilities to come to a meeting on 19th February 2020. At that meeting we agreed with them the most important things to work on and how we should work.


You can read the full notes from the meeting HERE



You can read Gary’s blog and see photos from the day HERE


This group of 40 self-advocates and their supporters told us that everything was important to them. We asked them which things they wanted to start with. They could choose up to 3 things each.


They told us that their top 5 things are:


Advocacy and Self-Advocacy  (15 votes)

The Right Support (14 votes)

Good Health (14 votes)

Accessibility (9 votes)

Education (7 votes)

This does not mean the other things are not important. It does not mean people will not work on the other things. It just gives us an idea about what everyone in the room thought was most important.

These pictures show how people voted. The pictures also show information about work that is already happening around the country that we might want to link in to:


How we should work


The self advocates also talked with each other about how everyone should work together on Good Lives 2020. They decided on some ‘must haves’. These are the things they think everyone should stick to.

They also decided on some ‘nightmares to avoid’. These are the things they agreed must never happen when everyone is working together.

You can see these in these pictures:



What happens next?



We know not every self-advocate could come on 19th February. But your views still count. So we are asking self-advocates who couldn’t be there to tell us what they think. We will add this information to the work we collected on 19th February.

We are asking all our other Members to tell us what they think via our survey. If you haven’t filled in the survey yet, you can fill it in HERE

We will put all of this information together and tell you what we have found in mid March.

To find out more, you can contact us by phoning or e mailing our office: or 0300 1110444, or by clicking on these links:

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Housing Choices

Our work on housing choices includes hosting a post with JMS Trust that helps people set up their new home.

Find out more about JMS trust  here 

We are working on questions about

  • Supported Living and being safe
  • Social Housing and Supported Housing

This includes trying to understand the numbers of unexpected deaths and incidents reported to CQC by providers and shared in the BBC file on 4 programme in February 2019


We have written a report on what we have found out so far and are doing next

You can read the July 2019 update here

There is an easy read summary at the start of the report


There is also a blog by Kevin from L’Arche on what they changed after Joe Ulleri died in hospital. You can read that here

Thank you to all the members so far who have shared information, ideas or examples from their work

If you want to share anything or tell us what you do after things go wrong in a service or what you want to see services do please get in touch

Blog by Jayne Knight, Learning Disability England member

“REACH – constantly aspire for better” Reflections on Supported Living today

Read here



Watch videos from our ‘Housing’ Youtube playlist 

Helping to make self-advocacy stronger

We are starting our work on this by

  • Helping to find and share evidence on what difference self advocacy makes
  • Connecting self advocates and sharing information on what self advocacy groups there are
  • Supporting a self-advocacy movement working towards improving health through rights.


We have had help from the Academics Network to start this part of our work.

Jan Walmsley has done a summary of what we know about self advocacy from what self advocates and researchers have said

You can see that here

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Jan also started a list of the research on self-advocacy and what difference it makes. We are sharing this so everyone can share what they know about evidence and impact to help make arguments for self-advocacy or help people (like funders) understand it.

You can download that here


Connecting people – list of self advocacy groups in England

Here is a list of all the self advocacy groups in England in December 2018. – click here to download list

It has public contact details that the researchers could find

It was Barod from Wales who made this list and gave it to Learning Disability England to host

Barod are a social entrerprise from Wales that does research and training.

We will update the list at least once a year.

If you think something is wrong or missing please e mail us on


Working together

The North West hosted with us a national self-advocacy convention alongside their regular conference so people from all over England came to build networks and share ideas.  This is part of our work on helping self-advocacy be strong.

You can all about that convention here Link


Sharing Self-Advocacy Best Practice sessions

RTR helped us fund a few sessions to help self-advocacy groups around the country connect with each other and share what they are proud of. You can see some of the presentations here.



At learning Disability England, we want to work with all our members to get their voices heard and to tell people what is important to them.

This page tells you about being a spokesperson.


Health Through Rights – Self Advocacy as a Social Movement

Learning Disability England is working with 5 self-advocacy or human rights organisations as 1 of 7 social movements for better health that Nesta is supporting over the next year.

You can read more about our work here.

Consultancy & Training

Consultancy and Training

Learning Disability England Associate Members can support organisations with things like:

  • Housing
  • Supported living
  • Employment
  • Criminal Justice
  • Rights & Law
  • Making services better
  • Person centred approaches
  • Organisational development

 More information

For more information please contact us.