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TX: 01.02.05 - Cardiff Care

PRESENTER: WINIFRED ROBINSON
Downloaded from www.bbc.co.uk/radio4
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

Thirty years ago after reading reports about the maltreatment of patients at a local long stay mental hospital four students from Cardiff University decided to offer to share their home with five patients. Today their model of supported living is the mainstream care offered for people with severe learning disabilities. Although none of the original group of five former patients still lives in the first house they shared they are still living in the local community, supported now by a charity - the Innovate Trust - as Sara Parker discovered when she visited them, with Mary Hibbs, who was the social worker assigned to monitor the experiment back in the 1970s.

ACTUALITY
HIBBS
Okay well we've got to the house and this is where John and Heather and Alan now live. They used to live a couple of miles away but over the years they've made a couple of moves and this is their current home. So we'll just knock the door and hopefully get quite a warm welcome I think.

Hello, can we come in? Do you remember me - I'm Mary? And there's John over there - hi John.

MANSELL
We lived together as a communal group, just like you would in a student house, I mean that was the model. Here I am, all these years later, Jim Mansell professor of learning disabilities at the University of Kent, an academic who's spent my entire career trying not only to get people out of long stay institutions - and that's a job, of course, that we've very nearly achieved in England - but to make sure that the kind of services that are provided in the community are good services and well organised and can serve not only people with less severe needs but also the most disabled people, so that those people too get a decent service near their family and friends in the community alongside everybody else.

ACTUALITY
HIBBS
Alan, can you remember how it was years ago when you first came out of hospital?

ALAN
Well I don't want to talk about it.

HIBBS
You don't want to talk about it - not in the hospital Alan, what happened when you came out, do you remember when you lived in the house in Ruthen Gardens?

ALAN
I enjoyed Ruthen Gardens.

HIBBS
You enjoyed Ruthen Gardens.

ALAN
Yeah. I liked that place because I loved the people, yeah.

MANSELLQuite early on we got some government money under one of the job creation schemes and were able to employ a social worker - Mary Pithouse as she was, Mary Hibbs now - who became the project worker and was able both to organise some of our perhaps unorganised student enthusiasm but also to give practical expression to our commitment, in a way that some of the public authorities could be a bit more comfortable with.

ACTUALITY
HIBBS
Do you remember going down to the student union?

ALAN
Yeah I remember yeah.

HIBBS
For a drink?

ALAN
Yeah, yeah I remember yeah.

HIBBS
Did you like singing with the [name] band?

ALAN
Yeah I do yes.

HIBBS
You love music.

ALAN
Yeah, yeah.

PARKER
What's your favourite music?

ALAN
I don't mind.

HIBBS
Don't mind.

ALAN
[Indistinct words]

MANSELLI went to university as a zoology student in the autumn of 1970 and in the second week or so one of my friends asked me to help him take some handicapped children to the cinema on a Saturday morning. And now we'd say they were children with learning disabilities. These children were in a long stay hospital, the Ely Hospital, which has closed now but then had just had a major government report into a scandal - people had been ill-treated and overcrowding and neglect. It was absolutely incredible - these children all had their heads shaved because head lice were endemic, lots of them didn't have adequate clothing. I remember not enough underwear, so people wearing pillowcases pinned around them, trousers held up with pins, gabardine raincoats of the kind that schoolchildren wear but covered right down the front with dried spittle. And we took a crocodile of these children across the road out of the hospital and through a council estate to a cinema and the people on the estate came out of their houses to press money into our hands to buy things for these children because they were in such obvious need. We were so angry about what was going on we formulated the idea that really these kinds of places shouldn't exist and people should be able to live in houses with whatever support they needed in the community.

ACTUALITY
HIBBS
I've got a story about you - shall I tell it?

ALAN
Yes.

HIBBS
There was a time when you were cooking one evening and you had to go and make beans on toast - that's what you wanted to do, and you went off to the kitchen to make beans on toast. And you hadn't long moved out of the hospital. And what you did was you looked in the cupboard, couldn't find the beans, so you got tins of peas out, you heated up the peas, put them on the toast, came out with plates of peas on toast for people. And everyone thought it was brilliant.

MANSELLOf course we talked to parents, parents had given their permission and there'd been a very long struggle but yes at the end of the day they agreed that people could come out. I think their view was that this was on licence and of course in a sense it was, if anything had gone wrong people would have been rushed back to the institution.

HIBBSThe first few months was really quite staggering because they were doing things that they hadn't done before like going to the shops and choosing their own clothes. There are stories, for example, when the dustbins were first collected from the street, one of the young people rushed in to say there are men outside actually stealing the bins. And of course that was really because they just didn't understand how the whole business worked of the dustmen coming round. People hadn't seen potatoes and didn't know how you kind of got from the potato to a chip.

MANSELLThere were in 1970 60,000 people with learning disabilities in institutions. This last year the minister reported that there were now only 750. We've got most people out into community based services. Now my view is that a lot of those community based services aren't as good as they could be and we've also made some mistakes along the way but the broad picture has been of providing decent accommodation and the support that people need in the community so that the function that these institutions fulfilled has been replaced in a much better way.

ACTUALITY
HIBBS
Are you going to just vary your kitchen? Are you going to be having some new worktops, they're quite old now.

PARKER
So you like cooking?

HEATHER
[Indistinct words] And chicken.

HIBBS
What's your favourite food? Yours favourite food.

HEATHER
Pizza.

HIBBS
Pizza.

MANSELLWhen you talk to them about their experience they're very clear that there'd be no going back. And the word that people use is freedom, for them it's not a subtle issue or a complex issue, they don't worry about the cost, they've always been clear that they wanted out, they wanted to live like other people in the community and that once they'd got that they said they had their freedom and they weren't going back.

ACTUALITY
HIBBS
I'm off now, I've got to go, okay, so I'll see you soon. Bye John, take care of yourself. Bye Heather, it's been great seeing you okay.

ROBINSONMary Hibbs ending that report by Sara Parker.

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