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TX: 11.03.09 - Death by Indifference

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 成人快手 CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

ROBINSON
"Death by Indifference" was the title of a report for the charity MENCAP, recounting the fate of six people with learning disabilities who died as a result of inadequate NHS treatment.

When the MENCAP report was published two years ago now, the Department of Health launched an independent investigation which concluded that some people with learning disabilities suffer discrimination and abuse across the NHS.

The Health Service Ombudsman for England has been looking at the concerns of the families featured in the MENCAP report and those findings will be published very soon.

Martin Ryan was one of the six. He had Downs Syndrome, autism, epilepsy and he couldn't speak. He had a stroke and he died in hospital after 26 days. He had not been adequately hydrated or fed. His mother Vera and his sister Anne described what happened to him.

ANNE
I had phone call from my mum to tell me that Martin wasn't very well and he'd been admitted into hospital. Martin had nil by mouth over his bed and he was linked up to a drip. The doctor told me that he would be fed intravenously and that was it really. I wasn't too worried because my father had suffered a stroke and he was in hospital and he got better, he came home and he's still with us. So naturally Martin being a lot younger and full of health, very, very strong, I wasn't too - sort of really you know that concerned at that time. A couple of days later I spoke to Martin's friend, Jan, and he said to me Martin keeps pulling out his drip, he said, I'm not medically trained, he said, I can't put it back in, he said, keep asking the nurses to put Martin's drip back in and, he said, they just didn't come back to him. I found that a bit - a bit worrying. Asked to speak to the ward sister, she eventually came and I said to her what's happening with Martin's nutrition and she told me that I needed to speak to the doctor. So I waited, the doctor came down and told me that if Martin didn't start to feed then they'd have to insert a feeding tube. So I was quite happy with that, went off, went back the next day and was told by Jan that there was a waiting list for the feeding tubes. I found that quite hard to believe actually - a big hospital only having one feeding tube. A lady came down to see me and she introduced herself as a medical student and told me that there was a waiting list for the feeding tube and there was a gentleman before Martin who was due to have the feeding tube inserted. As I was leaving the hospital that evening she came after me - this medical student - and told me that the gentleman who was supposed to have the feeding tube fitted had got a stomach infection and Martin was going to be operated on that evening and the feeding tube was going to be inserted. So I went home happy, thinking that Martin would have the feeding tube inserted and everything would be fine. That evening Jan rang me and told me that they weren't going to do the operation and I just could not believe what I was hearing.

VERA
I don't know the day, I can't remember the day, this registrar phoned and he said that he was knocking the appliances down. Well of course he was because Martin, even though he was 43, he had a mind of a little child, a toddler, so when that was going all over his head so of course he was trying to knock it down and there was never - when was it put back again? So he said we'll make him comfortable, we'll make him comfortable and let him go - and let him go. I couldn't believe my ears. I just went on - broke into a fit, crying and I said to my husband - they're going to let Martin go - and he just started crying as well. We just - we just couldn't believe it.

ANNE
Martin had the right to be afforded the same treatment as anybody else that had gone into the hospital suffering a stroke. My father had that right, he was treated and he got better and I just feel Martin didn't have that. I think they failed him. They failed in their duty of care and I just really feel that his human rights were violated because of his disability.

VERA
We can't - as a family - we just can't believe that such a thing would happen in a hospital in the UK because when you read all about what they did or what they didn't do it's a whole catalogue of errors from the very time that Martin went in, until he died, it was an absolute catalogue of errors.

ANNE
I feel very angry and I feel very, very sad because Martin's case isn't one - there are so many and there's more been coming - more are coming to the fore even now, it breaks my heart really.

VERA
And we don't want it to happen again.

ROBINSON
Vera and Anne Ryan. Well the Ryan family's MP is James Duddridge, he's the Conservative MP for Rochford and Southend East and he spoke about what happened to Martin Ryan in a debate in Parliament last week.

Have you managed to find out anymore about the circumstances leading up to his death?

DUDDRIDGE
Well I spent a number of meetings speaking to Vera and to Martin's sister Anne about the case and there just seemed to be a series of problems that were rooted really in the hospital not really understanding the implications of his learning disability and the fact that he had no speech and he's never had speech. And the hospital owed him a greater duty of care than they gave him. There were systems failures that I would expect to be in the report when it comes out, the ombudsman's report, but you know 15, 16 days without proper water or nutrition, the nurses thinking the doctors are taking care of him, the doctors thinking the nurses are taking care of things and his friends coming in and people from the home that he used to live in coming in really should have been used as an interface between Martin and the NHS. The NHS were the medical professionals and Martin's friends and carers, who knew him and could interpret what he was doing. As Vera said he was treated as an adult and whilst he was an adult he didn't have the mental abilities of an adult.

ROBINSON
We should probably make it clear that there wasn't a decision taken to deliberately withhold hydration and nutrition from him and what happened is there were problems getting these tubes into his veins, not enough done about that and then by the time the decision was taken to try to put the feeding tube in he was just too weak to have the surgery.

DUDDRIDGE
Absolutely, after some 15, 16 days and he died after 21 days, quite tragic circumstances. But it's encombant on health professionals to really follow these things through in a much greater - greater way and one of the reasons it's important that we look at Martin's case, it was one of six identified by MENCAP in the 'Death by Indifference' report, and the ombudsman's report will probably say this is one of the more clearcut cases where there has been service failure and the death was avoidable, and we need to reviewe this case in a lot more detail for other people.

ROBINSON
Well the hospital in question told us it's apologised to the family for the lack of care that was given to Martin Ryan and that changes have been made but you don't think that's enough?

DUDDRIDGE
I don't think that's enough, my constituents don't think that's enough and MENCAP don't think that's enough. I would go as far as saying the individuals involved should actually be named. Not out of some vindictive intent but just so that publicly people can see that there are implications to getting it wrong, medical professionals have personal professional responsibilities - a professional responsibility to their hospital and people can review what's happened to them - how they've been discplined and whether that's been appropriate. But at the moment the family don't know whether what the hospital have done has been appropriate and don't know whether the individuals have been dealt with appropriately.

ROBINSON
Well Mark Goldring, who's the chief executive of MENCAP, the charity that started all this with its own report, is also with us. Has there been any improvement then in the way the NHS treats people with learning disabilities since 2005, when Martin Ryan died?

GOLDRING
Well there's certainly been a major improvement in the polices. The Department of Health has taken this seriously. Following MENCAP's report there was an independent inquiry and the Department of Health have accepted the recommendations of that inquiry. So there is a platform for improvement. We're impressed and confident that there is goodwill and there is the intent to get that right but there's a far cry from getting those policies right and implementing them with hundreds of health trusts, thousands of facilities and millions of health workers right across the country. So the real challenge now is for the ombudsman's report to focus attention on this in every single institution so that they look at their own practice and say are we implmenting these guidelines and are we really making the improvement that will make a difference to people with learning disabilities.

ROBINSON
We've just heard James Duddridge, the family's MP, say that he would like the health professionals involved in Martin Ryan's care to be named in the ombudsman's report now that would be unusual, she doesn't usually name names, is that what you expect?

GOLDRING
Well what we hope for is that where individuals have failed to deliver appropriate service to acceptable professional standards they should be held to account and if the ombudsman finds that professionals have failed in their duty yes we believe they should be named. Our understanding of the six cases is there are situations where it really feels as if some professionals did not do their job properly and in those circumstances we would like to see them named.

ROBINSON
And what action then would you expect from the Department of Health?

GOLDRING
Well I think there are formal disciplinary procedures, both within the department within the health trust and within the relevant professional bodies. And how appropriate which one of those is depends on the facts that the ombudsman finds. But we do want to see systemic change but we also want to see individuals held to account because that is the duty owed to those who've died and their families.

ROBINSON
Mark Goldring, chief executive of the charity MENCAP and James Duddridge, Conservative MP for Rochford and Southend East, thank you very much. As we said that ombudsman report - ombudsman's report - is expected really any day now.

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