Sunderland People First – Reigniting debate and stimulating a momentum for change: the role of research findings in engaging policy makers with current priorities for people with a learning disability.

In January 2025, some of us involved in this project met up together in Grantham, Lincolnshire.

Matty and Lisa from Sunderland People First, two of our team members, recorded this video to explain what we did.

We rented a house and team members visited across the week, spending time together, having discussions and writing letters to people.

For many of us it was the first time we have met in person. It was great to have time to stop and think and discuss things.

This project is funded by a research funder, NIHR SSCR (National Institute for Health and Care Research, School for Social Care Research).

Research tells us what people want in their lives, but we do not know how to make it happen. So, we are asking people for their ideas.

We sent over 150 letters to people and organisations including politicians, activists, trade unionists, writers, faith groups, third sector organisations, theatre companies and more.

You can read the letter we wrote below (if you click on the image the pdf opens in a new window if you need to zoom in to read) or click here if your screenreader requires a Word document.

We included a leaflet called Transforming Care? Are we improving health and care services for learning disabled people?

It included the targets made in the Transforming Care programme (that were all missed) and a timeline of promises people have made since 2011.

We sent the letter to try and start a discussion, about how to get people to care and act to improve the lives of people with learning disabilities.

We have had some responses already.

We are going to pull together all the different things people say in their responses.

When we have pulled them all together we will think about what’s most useful to do next.

It might be some kind of virtual or in-person event(s) to talk about what people have said.

It might be something else. We don’t know yet.

If you would like to share your thoughts please leave a comment on this post or drop us an email.

How do we get people to care and to act?

Forty years ago, An Ordinary Life, published by The Kings Fund promoted the goal of people with learning disabilities living ordinary lives, in ordinary houses, in ordinary streets.

Twenty years ago, Valuing People led by the then government launched with the aim of enabling people with learning disabilities to “lead full and purposeful lives in their communities and develop a range of activities including leisure interests, friendships and relationships”.

Today, despite all the policy and research over decades, the estimated 1 million learning disabled adults in England are still at a big disadvantage in terms of relationships, health and employment. Life expectancy remains wildly different, with 6 out of 10 people with learning disabilities dying before the age of 65 compared to 1 out of 10 people from the general population.

Why so little change?

Deaths, abuse and scandals involving people with learning disabilities seem to make no lasting impression on the political or public imagination.

The pace of change and the systemic indifference to the plight of this group, is both frightening and dangerous.

What can we do about it?

We are not sure, but we are going to focus on trying to reignite the debate about current priorities for people with a learning disability.

We plan to:

Summarise what has been said before. There has been a lot of talk, a lot of research, and a lot of policy, but very little change.
Identify the main messages from research that might suggest helpful ways forward. Our research has some common messages about good support, good relationships, flourishing lives, home, love, and belonging.
Contact people who we think might be – should be – interested and who might be able to act.
Take note of the responses we get – positive, negative or non-responses and see if there are ways in which we can reignite useful discussion.

Who will you be contacting?

A wide range of people, which is likely to include the ‘usual suspects’ of senior politicians, sector leaders and charities.

We will also contact people and organisations we don’t always think of contacting, for example, parliamentary committees, opposition party politicians, trades unions, and people in local councils.

We also hope to connect with groups interested in social justice and change who might not know very much about this particular issue, artists and creatives who might help us, famous people who have a big public platform. Feel free to add your suggestions in the comments of this blog post.

What else will you do?

We will also write some blog posts, some ‘opinion pieces’ and/or policy briefings and anything else we think could be useful and might fit into the time and budget.

What is the timescale?

We are going to focus on an intense period of activity and contact with people in March and April 2024.

Who are you?

We are a group made up of people from self-advocacy organisations, parent/carer organisations, research and activism backgrounds. We have some funds from NIHR School for Social Care Research to do a short and small piece of work just to begin to think about how we can get the right people to care a bit more about all of this – and to act.

We are:

How does this fit with other things happening?

We are not alone in doing work like this and you can find out more about what other people are doing here:

Changing Our Lives

Learning Disability England

My Life My Choice

Stop People Dying Too Young Group

Sunderland People First

Staying Alive and Well Group

British Association of Social Workers (BASW) England

Who do I contact with ideas and feedback?

You can add a comment to this blog post, or you can contact us by emailing us here. We would love to hear your ideas, suggestions or feedback.

An easy read version of this document is here:

This study is funded by the National Institute for Health Research, School for Social Care Research. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Tag: Sunderland People First

Grantham residential – asking questions

Using research to try and get people to care and change things with and for people with learning disabilities