Tag: Reigniting Debate

Grantham residential – asking questions

Posted on by George Julian

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.

Letter: How do we get people to care and act to improve the lives of people with learning disabilities?

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

Thumbnail image of a leaflet with a long timeline

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.

A life less ordinary

Posted on by George Julian

[This post was written by Prof Chris Hatton in May 2024, an Easy Read is available].

Front page of a document called Easy Read A life less ordinary

In various ways, the mantra of an ordinary life has been central to what governments and services say they want to achieve for people with learning disabilities for over 40 years. If an ordinary life is so important, how will we know if it’s being achieved or not?

I’m starting from the view that an ordinary life doesn’t mean everyone with learning disabilities has to be shoehorned into what someone else decides is ordinariness or respectability. Like any group of nearly a million people (in England alone), people with learning disabilities are hugely diverse, and will want to live their lives in all sorts of different ways. David Abbott’s blogpost goes through what recent research tells us about the kinds of lives people with learning disabilities want to lead, and what people need to help them lead the lives they want.

So how can we decide what’s happening in terms of ordinary lives? We can look at whether the lives of people with learning disabilities as a group are becoming more like the lives of everyone else living in England. For example, while some people with learning disabilities may decide to live in a commune or become a trapeze artist in a travelling circus, if people with learning disabilities on the whole are living a more ordinary life then most (not all) people will be living in a place they own or rent, possibly with a partner and perhaps children, and having a paid job.

As far as I know, in England there has only been one serious attempt to find out about the lives of a really big and diverse group of people with learning disabilities, and then compare some aspects of people’s lives to the lives of everyone else in England. This was the ‘Adults with Learning Difficulties in England, 2003-2004’ project (you can find on this hidden corner of the web), which through interviews collected information about the lives of almost 3,000 people with learning disabilities. About a quarter of people interviewed were found by a market research company knocking on doors as part of their general survey work, rather than finding people through services. This project was done in the early heady days of Valuing People, and was designed to be repeated on a regular basis to see whether Valuing People was having a real impact on people’s lives.

This has never been repeated. Two recent research projects have, however, used some of the same questions with smaller groups of people with learning disabilities. The Coronavirus and People with Learning Disabilities study interviewed over 600 people with learning disabilities and surveyed over 350 family members and support workers across the UK in early 2021 to find out about people’s lives during the COVID-19 pandemic, then followed people up until the autumn of 2022, when all public health protections had been withdrawn. The 200 Lives project interviewed 107 people with learning disabilities and support workers in England about people’s lives in supported living and residential care – these interviews also took place at various times throughout the COVID-19 pandemic.

Although it’s not ideal, we can use this and matching information for everyone in the UK to ask two questions:

  1. Have people’s lives on the whole become more ‘ordinary’ in the nearly 20 years from the Adults with Learning Difficulties in England project (ALDE) to the recent research projects done in the last couple of years (the COVID-19 and 200 Lives projects)?
  2. How do the lives of people with learning disabilities as a group compare to the lives of everyone else in the last couple of years?

Have the lives of people with learning disabilities become more ‘ordinary’ the last 20 years or so?

The short answer is no, although we have to bear in mind that the recent research was carried out in the COVID-19 pandemic, when some aspects of people’s lives were very different. Where possible, I’ve tried to use information from the final interviews in the COVID-19 project, when public health protections had been lifted and services were supposed to be ‘building back better’.

The table shows there are possibly some improvements in people with learning disabilities feeling more safe in their local areas, and people having more choice over where they live, but there have been no real changes in who people live with, having a paid job, voting, and experiencing discrimination or crime.

An image of a table

How do the lives of people with learning disabilities as a group compare to the lives of everyone else?

The table below shows that there is still a yawning chasm between the living circumstances of people with learning disabilities as a group and people generally. Compared to people generally, people with learning disabilities are much less likely to be living as a couple, much more likely to be living with family through adulthood, more likely to feel unsafe in their local area and to experience crime, much less likely to have a paid job and much less likely to vote.

A table with text

Ordinary lives, equality, decency or freedom?

Although the information we have is far from ideal, it’s pretty clear that overall the lives of people with learning disabilities in England have not become more ordinary in the past 20 years, and the gap in ordinariness between people with learning disabilities and everyone else remains massive.

But is ordinariness the target to aim for? Thinking about the huge diversity of people with learning disabilities, there are many people for whom ‘ordinary’ could work against someone living a flourishing, joyous life, and being supported to do so. ‘Ordinary’ is only one yardstick. What about equality? I haven’t included information about health inequalities here but they are covered by David Abbott’s blogpost and George Julian’s timeline, and show continuing grim inequalities. Or standards of decency and human rights? This isn’t about whether people with learning disabilities overall experience decency and human rights. Every single person should be treated with decency and their human rights respected – research, inspection reports of services, serious case reviews and journalists keep showing us again and again that this is not true. And lastly, what about freedom? What do lives lived in freedom look like for a million people?

As someone who spends a lot of time looking for ways to bring to light the social injustices experienced by people with learning disabilities compared to other citizens, it’s quite easy to complain about the fact that people with learning disabilities are rarely asked the same questions about their lives as other people. Stopping to think together about what these comparisons are for is much harder but necessary work.

This work was 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.

Research shows us that nothing much is getting better

Posted on by d.abbott

[This post was originally written for David Abbott’s blog in February 2024 and is reproduced here. There is an Easy Read version available]

I did an English language exam once. I thought I’d get a good grade. I always wrote quite dry essays about the education system or the welfare state or something and got good marks.

At the time of the exam I was dating a girl called, Hope. It was pretty disastrous. For both of us. Me trying to be a heterosexual. Her having to deal with my confusion.

I turned over the exam paper and the first essay option was one word. Hope.

So instead of writing about the education system I wrote this kind of confession to whoever was going to mark my exam about all the emotional mess I was in.

My teacher collected up the exam papers and glanced at what I’d written. She looked at me with a very sad and concerned face and said, ‘Oh, David.’

Here I am supposed to be writing a piece about what research tells us about the lack of change highlighted in George Julian’s summary which is one of the resources that is part of this project. I am going to. But the ordinary, academic ways of writing things like this has so obviously made no difference. I don’t say that me writing it like this will either.

I have never counted up the number of family members I have who are learning disabled or autistic. It has never occurred to me to do it. Is that weird given what I do for a living? The only time I think about it really, is when harm is done to them which seems to me is about that one part of them that is, for whatever reason, impossible for other people, other organisations, health and social care systems, to cope with.

With permission, and names and some facts changed a bit, can I tell you this.

My niece is a young woman with learning disabilities. Her support needs are categorised as ‘low’, so she doesn’t have much contact with social services (until things go wrong.) She rents a flat from a social housing organisation which was a big deal and a happy day. Her mum lived not far away but her mum died not long ago. And one of her mum’s greatest sources of anxiety was how things would work out for her daughter. My niece likes having her own front door and front door key. But she finds money things difficult, including the details of her tenancy. She is sometimes bullied. Someone claiming to be a relative moves in and stays on the sofa for way too long. When she is really low, my niece calls the emergency services. Often it isn’t the right thing to do but it’s what she does. In the end she gets sent to prison and her tenancy is uncertain. Now all kinds of people are involved.

My nephew is autistic. He lives alone, works in a supermarket and has a daily routine that he has honed and which he loves. He has no real contact with any kind of services. He has been bullied ferociously pretty much every day of his adult life – in school and then after school. His mental health goes up and down. His ability to take care of himself goes up and down. He has been ‘spoken to’ at work about making sure he comes to work ‘clean and tidy.’ He has a great fear of losing his job. He goes to the same pub every day after work at the same time. He has two pints and goes home. People in the pub are warm and friendly and though he does not want to chat to folks he enjoys a smile and the recognition.

In writing about my nephew and niece I realise that they are only a couple of ‘bad turns’ away from things properly unravelling. Maybe they will end up featuring in another one of those terrible, terrible accounts of premature deaths, of dying in a so-called care environment.’ Every ‘issue’ that emerges from these two very short glimpses into their lives has been fairly exhaustively covered and rehearsed by publicly funded research gong back decades. I occupy no moral high ground on that point – I am a researcher who for a long time was schooled in, … ‘chasing the money.’

But if it helps anyone reading this to locate some of what might be going on here in recent research (although, should it be strictly necessary when the problems seem so self-evident?) then here we go in a top-5 messages style.

  1. People want to live in a place they can call home, that feels like home, and where they won’t be routinely harmed. What this looks like will be different for different people, but nobody is likely to especially want to live in a hospital.
  1. Lots of people would like and would benefit from even quite small amounts of support with day-to-day stuff. Not getting it is not just unhelpful, it can lead to things going really wrong (and becoming outrageously expensive).
  1. People want good stuff to do in the day – with their lives. It’ll look different for different people. It might be having a job, being in education or training, volunteering, doing things they enjoy. Wider family members want this too and they have their own concerns and worries because – of course – most of us live as part of families – however they’re organised.
  1. People would like not to die at a much younger age than other people and be treated equally when they need healthcare.
  1. People want lives that are as up and down as the next person. People want joy, connection, relationship – even though this will look and feel differently for different people (obvs).

An important point having listed these projects is how much we know already that is true and relevant that is twenty, thirty, forty (etc) years old. Whether that is the Kings Fund, ‘Ordinary Life’ setting out the goal of people with learning disabilities living ordinary lives, in ordinary houses, in ordinary streets; Jim Mansell’s seminal 1993 blueprint for good local services; or the now twenty year old aims of Twenty years ago, Valuing People 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’.

On the day that I write this, a thread on twitter posted by Barbara Keeley, MP @KeeleyMP

“The Government’s answers to my Parliamentary Questions tell you everything you need to know about the Conservative Governments appalling lack of action to end the detention of autistic people and people with learning disabilities in inappropriate inpatient settings. The key mechanism identified by the Government to sort out issues around funding flows relating to this detention is a “Funding Flows Task and Finish Group”. But the Minister admits in her answer to my question that the group has met just twice in the past year. My question also reveals that there are 130 autistic people and people with learning disabilities detained in settings rated as “inadequate” by @CareQualityComm and there may be more people in settings with a good CQC rating which are later shown to have a culture of abuse. The total number of autistic people & people with learning disabilities detained in inpatient units has barely shifted in recent years and is still over 2,000. The Government is about to miss yet another target to deal with this. When will they start to take this seriously?”

 

The ‘Reigniting Debate’ team are:

David Abbott (University of Bristol)

Matty Prothero & Lisa Clark (Sunderland People First)

Shaun Picken & Iarfhlaith O’Connell (My Life My Choice)

Katie Clarke (Bringing Us Together)

Katherine Runswick-Cole (University of Sheffield)

George Julian, Sara Ryan & Chris Hatton (Manchester Metropolitan University)

 

This work was 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.

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

Posted on by George Julian

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:

David Abbott
Lisa Clark
Katie Clarke
Chris Hatton
George Julian
Iarfhlaith O’Connell
Shaunie Picken
Matty Prothero
Katherine Runswick-Cole
Sara Ryan

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.