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You and Yours - Transcript 91热爆 Radio 4 |
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WOMAN'S HOUR TX: 28.01.08 Katie Thorpe - Medical Intervention |
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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 91热爆 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. TX: 28.01.08 - Katie Thorpe - Medical Intervention PRESENTER: JANE GARVEY GARVEY Katie Thorpe is a 15-year-old girl with cerebral palsy. Last year her mother, Alison, asked a hospital in Essex to give her daughter a hysterectomy, so Katie would be spared, what her mother called, the pain, discomfort and indignity of periods. The hospital refused saying there was no medical reason for that operation. The disabled lobby has said that sterilisation where not clinically necessary could well have disturbing implications for young girls with disabilities in Britain. Well Alison isn't giving up, she joins us from our studio in Chelmsford this morning and we'll also talk, in a moment or two, to Liz Sayce, who's the chief executive of RADAR, that's the national disability rights organisation, she's with me here in London. Alison Thorpe good morning to you. THORPE Good morning. GARVEY Just tell us about your daughter Katie, about what her quality of life is like. THORPE Okay. Katie is 15, very nearly 16 - she'll be 16 in March. Katie is totally dependent on myself, as her primary carer, and other carers to meet all of her care and social needs. Katie's quality of life depends on those carers around her, they influence or provide activities for Katie which she can't initiate for herself. Katie, unfortunately, can't actually do anything for herself apart from breathe really. GARVEY Presumably life has got more complicated and practically much harder as Katie has got older? THORPE Oh incredibly harder as Katie's got bigger. Unfortunately her quality of life has diminished, we are unable to do with Katie the sorts of things that she used to enjoy - such as horse riding, such as visiting theme parks, going down water chutes, things like that - that when she was smaller and younger we were able to carry her and take her on rides, we can't do that with her anymore unfortunately because she's really a teenager now in quite a large body. GARVEY How does she respond to you and indeed to other members of the family - does she know you? THORPE No absolutely not. It's quite interesting - this was brought home to us once again just over the weekend when we visited a friend in hospital who has a son who is 18 months younger than Katie but still with severe cerebral palsy, his reaction when his mum walked in the room was enjoyment, pleasure at seeing his mum, unfortunately with Katie that doesn't happen - whoever walks in the room, yes she may well respond to the fact that someone has arrived but there's no recognition, no emotional attachment whatsoever. GARVEY What makes her happy, is there anything that you can do to her or for her that appears to get a reaction of any kind? THORPE Yeah Katie very much reacts to cause and effect, very much as perhaps a young baby in a cot would do and you wind up a mobile that plays a tune and you get a reaction and that's very, very much the same as Katie. She is basically a teenager with a baby's brain. GARVEY And obviously on a day-to-day basis she's doubly incontinent, that isn't going to change. THORPE Absolutely not no. GARVEY Her periods haven't started, although they might. THORPE Yes we understand that Katie, because of her cerebral palsy, although she's fairly large and quite well grown for her age, for a child with cerebral palsy, she's obviously smaller and weighs less than the average teenager of her age and for that reason that's the likely reason that she hasn't started her periods yet but as she does grow and develop - and she's certainly entered puberty now and there are signs, sort of telling us that yes lots of changes are taking place and we are expectant that it is going to happen. GARVEY And when it does you would like a care plan in place, you believe that a hysterectomy would, whilst not adding to the quality of your daughter's life, at least not make it worse. THORPE Yes that's absolutely right. We don't want to lose any further quality of Katie's life. Katie's quality of life, unfortunately, is eroded day-by-day, month-by-month. Certainly menstruation will be a further significant erosion of that quality of life and yes we'd like a care plan in place to be able to take that away once and for all. GARVEY What did the hospital say to you Alison? THORPE Initially the hospital were very supportive of us, offered us different options - drug treatment, for example, which following further discussion we have discounted because of the risks of thrombosis and side effects. So having discussed lots of options - and one of our criticisms is that there are other options out there for us, well you know if anyone else can provide us with any other option we're most willing to hear it but we certainly have in depth discussed all the options with the consultant and the failsafe option for Katie is a partial hysterectomy... GARVEY Which would mean - sorry - which would mean a major operation for a girl who's already going through so much. THORPE Probably not as major in this day and age as perhaps would have been sort of years ago, possibly even there is the option of keyhole surgery. But Katie has already had surgery to alleviate what could be deemed as unnecessary surgery to straighten her knees, to straighten her feet - Katie doesn't stand, Katie doesn't walk - but that sort of surgery has gone ahead and I don't see this as being any different to that sort of surgery she's had in the past and I don't see why she wouldn't cope with it any worse than the surgery she's had previously. GARVEY Alison thank you, we'll come back to you in a moment. Listening to all that Liz Sayce, the chief executive of RADAR. Liz, first of all, Alison is one of obviously of a number of very devoted parents who on a daily basis do an extremely tough job out of love, there's no other explanation is there. SAYCE Oh absolutely and one of the things that we are campaigning for very vigorously is improved rights and entitlements to a kind of partnership model of care. We've often, in the past, I think, had carers and family members running one campaign and then those cared for running a separate campaign if you like and we want to bring everybody together to campaign for the right support. I know that doesn't answer all the issues that Alison has so eloquently raised but I did wonder, Alison, as you were talking about Katie not being able to go horse riding and so on again whether - whether there wouldn't be possible ways with stronger support to actually enable Katie to be carried and lifted to improve her quality of life that way. GARVEY Well perhaps we can talk about that in a moment but what happens to girls as profoundly disabled as Katie when they get to puberty? SAYCE Well I think in terms of menstruation firstly of course some young women with learning disabilities are able to cope with menstruation and it doesn't necessarily cause the pain and anxiety that it can do for some people. So in some cases it's possible for families or paid carers to manage that through - as people, as you Alison, are managing incontinence on a daily basis. So sometimes that happens. But other options that people certainly do use are contraceptive medication - the pill in essence - or a long lasting contraception. And I suppose that the view is often taken that it's - and I don't know the medical details in this case, so I'm not commenting on Katie's own case - but the view is often taken in relation to human rights that you start with, if you like, the least risky, the least restrictive option and medication might seem to be that before major surgery. But as I say it all depends on the risks and benefits in the case of the individual. GARVEY But you acknowledge that there are people, like Katie, who have physical needs but do not have a view, they simply don't have a view and the person with the view is the mother or the carer who is doing everything for them? SAYCE I think that it's very recent that disabled people have argued for taking our own decisions, if you like, so we need to be careful in general - and again I'm not talking about Katie's case - but in general we do need to be careful to make sure we support people to give their own view wherever they can because so often in the past - and still now - decisions are made on behalf of disabled people and that's not right. But yes, in answer to your question, yes certainly there are individuals who are not able to make decisions or to express their views about key issues. But we must try all the support first, in general, and where they're not a decision must be made in the best interests of that individual. GARVEY Alison, I think I'm right in saying that you don't want to set a precedent of any kind, what you want is a decent quality of life - as decent as it can get - for your daughter? THORPE Absolutely. I think the crucial point there is yes listen to disabled people and those able to make a choice for themselves, yes of course, I'd advocate that they're given that choice. But if they can - if in Katie's case she is unable to do that, and who can actually tell me that Katie wouldn't be saying to me now I want this operation, I don't want periods, this terrifies me. I don't think that's the case because I don't think Katie actually has any great understanding of what's going on around her at all. So therefore it's making her as comfortable and giving her as much quality of life as we possibly can while she's still here. GARVEY I just wonder Alison whether some people might be saying - this is about making your life easier. I hesitate to say that because I know that you do a tremendous amount for your daughter, what do you say to that criticism that some people might make? THORPE Rubbish. No, if - you know all the care in the world - if we had 24 hour care for Katie - it still would not take away the problems association with menstruation. Yes my life is difficult, it is tough, but that's not what it's about. SAYCE I think - I mean I appreciate that totally Alison, I'm just aware that from our experience, working with disabled people all around the country, we have sometimes come across family members and also paid carers who have wanted to do something, very understandably because they've been driven to the end of their tether, like, for example, give somebody very high doses of medication to make their behaviour more manageable and that's not necessarily in the best interests of the individual, which is why we think that although most - family members generally love the person they're caring for and want the best for them we do need also a kind of an independent view and we think there should be, when somebody doesn't have mental capacity, there should be an independent advocate, if you like, whose only job is to think about the best interests of the individual. Then it can't be clouded by any other consideration. But the carer must be utterly involved, usually and in most cases we want a partnership decision. GARVEY Right, but is it possible for a carer to be utterly involved? Alison, I guess you would say well come and live my life, come and live with me for a month and then tell me what I should do. THORPE I think that's the six million dollar question really because unless someone is going to come and spend months with us they're not going to get to know Katie at all. We have had assessments over the years from various organisations, various professionals, and the answer has always very much been the same with Katie that she has no cognitive function, she doesn't have any intellectual understanding, therefore we're never going to get that independent advocate to be able to advocate for her. So therefore the person that knows her best, rightly or wrongly, is her mum. GARVEY Liz, you're nodding. SAYCE Well I think that clearly you know Katie better than anybody, I suppose the question then is what does the NHS trust or social services do in relation to the information that they're collecting on the clinical pros and cons of one option versus another option? I really don't know what those pros and cons are in relation to Katie's particular situation. But it does seem to me, in principle, reasonable that an organisation, like an NHS trust, looks at the risks, the benefits, what's in the best interests of Katie, taking absolute full account of your experience and you knowing Katie best. And I can't say whether they've done that or not because as you say I don't know the circumstances but it seems to me that's right in principle. GARVEY Alison, just tell us then what your next step is going to be. THORPE Yeah sure, can I just quickly answer that? We have had in depth consultations with a consultation at the trust and he's certainly met Katie, listened to our arguments, put arguments against ours and the decision was made after a very - probably three visits to the consultant, the decision was made by the trust in isolation from those meetings with the consultant. But yeah our next step forward is to lobby, I hope that common sense prevails and that the trust will reconsider their decision. SAYCE Liz, can I just add that I think it's very good that this debate is being raised and one of the - and you know all the sides of the debate need to be heard. One of the pieces of context I think we need to think about is the fact that it's pretty recent that many disabled people were sterilised, not for reasons of their best interest, as you're trying to do in this case, but simply for reasons that it wasn't thought right that people with learning disabilities should have children, 60,000 disabled people were sterilised in the States in the 20th Century, there was a lot of forced sterilisation that went on. And I think disabled people are very - very understandably very nervous of the precedent that this could set and I appreciate, Alison, that you're saying very strongly you're not looking for a precedent but I think that needs to be part of the debate as well. GARVEY Liz Sayce from RADAR thank you. And Alison Thorpe thank you very much indeed, thanks for talking to us. Back to the You and Yours homepage The 91热爆 is not responsible for external websites |
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