Tag: University of Bristol

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.