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You and Yours听- Transcript 成人论坛 Radio 4 |
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TX: 13.01.05听 - PATIENT CONFIDENTIALITY PRESENTER: LIZ BARCLAY 听 |
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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 成人论坛 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. BARCLAY Patients have a right to confidentiality and doctors and psychiatrists working with mental health patients in the UK must respect that right. But for family members caring for someone with a mental illness patient confidentiality can leave them feeling isolated and helpless because they don't have access to information about their loved ones' condition and treatment. They feel that patients are left vulnerable and at risk because those who are closest to them don't have details they can act on. We'll hear shortly from one mother who says that a lack of information about her son's condition contributed to his suicide. But first what exactly are the limits of patient confidentiality? Professor Roy McClelland is a psychiatrist in Belfast and chairs the Royal College of Psychiatrists advisory group on confidentiality. They are just about to publish new guidelines on this issue. Roy McClelland is this set out in law or are we talking about a code of conduct maintained by the whole of the medical profession here when we talk about patient confidentiality? MCCLELLAND Good afternoon and thank you for your question. There is a clear obligation on healthcare professionals, including doctors, including psychiatrists, in the maintenance of patient confidences. It's both a moral duty and a legal duty, for the most part enshrined in the common law. And of course that has now been reinforced by the enactment of the Human Rights Act, which came into power in 2000. So there are strong legal, as well as ethical, obligations. BARCLAY Well given that then who decides if patient confidentiality has been breached? MCCLELLAND The other point to note of course is that the duty is not an absolute duty, unlike the privilege, for example, of a solicitor or the special arrangements in relation to the confessional. So situations can arise where exceptions to that obligation may arise and these are essentially matters for professional judgement. However, there is guidance, including guidance from the General Medical Council and the health service guidance on confidentiality, where exceptionally the duty of confidentiality may be breached. BARCLAY Well that's the law but one mother, Isobel McCue, feels that it worked against her son, John's interest. He committed suicide when he was 30. For nine years the family tried to find out about his mental health from the various doctors and psychiatrists treating him. Isobel believes the wall of silence that she came up against contributed to her son's death and she told me why she fought so hard to get that appropriate information. MCCUE To try to understand how best the whole family could have helped to make John's life better and our own lives better because if you can imagine it's quite upsetting for the whole family. He was getting very quiet and didn't really communicate very much and he'd stand for hours just looking out the window. And then it progressed to be a more serious illness, if you like. It's not as clear cut as they refuse to give you information, it's more of a sending you round in circles. When you phone for information for one person they give you a number for somebody else, they give you a number for somebody else. BARCLAY What information do you think you really needed that you didn't have, did you, for instance, have information about his treatment and what that treatment was aiming to do? MCCUE I think that's one of the things that we need to know is the medication and what the effect, because some of the medications will give them side effects of suicidal thoughts. But we don't know this, we don't know how to look at the medication, how much should they be taking and be taken into the confidence of the doctors to maybe say well they should really only be taking so much because quite often they overcompensate and take more medication than they're supposed to be taking. BARCLAY Do you think that John was handling his medication properly? MCCUE No. On one particular instance there were four different medications, one thing to calm him down, one to waken him up, something for his psychosis and he only had it for about two days. I'd seen he'd taken about 10 of one, about five of the other, which he should only have been taking one a day. So I phoned up the GP and explained that I've counted this medication and he's taken far too much. And the answer I got was well people with schizophrenia can handle that kind of thing. And that was the end of that. There was nothing else said about it. So it's wee things like that that don't help the situation at all. BARCLAY Do you think that if you'd had more information, better information, you could somehow or other have halted that deterioration, slowed down that deterioration? MCCUE Well if you go back to the beginning when John was becoming ill at first I think that's when we need to have early intervention, need to get in there quick before they deteriorate. And I know that they must have confidentiality, we're not looking to say - ask them if they've told them any personal things - we just want to know what is the best way to help - tell us how to help. Because most carers are jumping through hoops to try and help the people that they love. But it's very, very difficult to get the information from them. BARCLAY How did you feel when you were going through all this process of trying to get this information, of going round in these circles? MCCUE Well you get to the stage where you're actually exhausted, you get tired so you just give up, then you have to wait and you think right I need to get started again and off you go again to try and fix things. Because as a mother you think I should be able to fix this but you can't. Quite a few carers have said they actually begin to feel that they're becoming mentally ill themselves because they're put through so much. BARCLAY What difference do you think having the information, knowing what you know now, would have made to John's life? MCCUE I think that we could make - if not save their lives, because we can never say that that would have happened, but we could have made their lives maybe happier because John had a terrible eight years - awful. So I think they could have helped to make it maybe better. And that's all you can ask, isn't it, to make somebody's life a wee bit better. BARCLAY Isobel McCue. Mary Taylor has had experience as a carer and offers support to carers in Suffolk. Mary Taylor how familiar would you say Isobel's story is? TAYLOR I'm afraid it's very familiar. And I'm sure all carers' hearts will go out to Isobel - it's a very sad story. And one of the things that strikes me about it is the fact that she wasn't listened to. So it's not just a failure of communication to her but the fact that her doctor didn't listen to what she had to say. BARCLAY You mean from the outset so that perhaps there could have been that earlier intervention? TAYLOR Well yes but also when she noticed that he was taking his medication erratically, that this is something that should have been taken seriously. BARCLAY Professor Roy McClelland what about that point - is there a lack of knowledge, do you think, amongst clinicians and those working with mental health patients that leads to them not listening to what a family has to say, that thinks that perhaps the family isn't really qualified to give information to the doctor about how their patients are taking their medicine? MCCLELLAND I think important issues are being raised here which extend well beyond the issues of confidentiality. I think communication is central to good care, particularly for people with complex and/or enduring mental health problems. And one has to balance the rights of individuals and the needs of individuals for confidence and confidentiality to be maintained and the need for partnerships - partnerships - three way partnerships between the carer, between the user and the professional carers. And the success of modern mental health turns on good communication. And therefore you can see already a tension between what seems an obligation of confidentiality on the one hand and best interests in sharing of information on the other. BARCLAY Well let me bring in Phillip Newhouse who is a user of these mental health services. Phillip, you've been diagnosed with severe obsessive compulsive disorder and severe depression, do you think that this balance has been got right between rights to confidentiality on the one hand and good communication on the other? NEWHOUSE It certainly hasn't and I'm not entirely sure who's to blame for it but I think we need to establish good protocols, if necessary laid down in law, as to what should and shouldn't be discussed with carers because there are times when frankly the carers need to be told, even if the patient doesn't want their carer to be told, sometimes carers need to be told things either for the carer's safety or for the patient's safety. BARCLAY Are there times when carers though don't need to be told and that patient confidentiality has to absolutely be respected, whether or not that might be to the patient's benefit in the long run? NEWHOUSE Well yes there are and that's why we need the balance. In a very small minority of cases it would be totally inappropriate to share any information about the patient with the carer. I don't want to put this in a negative sounding way but in a very small minority of cases sometimes the carer is part of the problem and the service providers recognise this and need to - feel the need to separate the patient from the carer. BARCLAY Phillip is there - can you give me an example of that - of how that works? NEWHOUSE Well yes, sometimes you find that the carer has got slotted into the role of being carer and finds it very hard to give up that role and to give the patient the space and time to grow and recover and become more independent. BARLCAY Mary Taylor, would you agree then that there are a small minority of cases where the carers can become part of the problem? TAYLOR I think yes there can be a small minority but the great majority of carers actually want the person they care for to be able to grow and have that space and to become independent and leading their own fulfilled lives, they don't want to go on being carers, they are doing it because they want the person that they care for to recover as fast as possible. And if they are part of the problem then they need help and advice and information about this, so that they can actually be - still be part of the recovery process and learn to step back. But carers of course are always worried, they see that there is a risk in this and carers often say - I don't know quite what to do, I'm worried if I let him do such and such that there's going to be a problem. BARCLAY Do you feel then that sometimes that help and advice is not forthcoming, even where a carer could be part of the problem, because doctors and psychiatrists are using confidentiality as an excuse? TAYLOR I don't like the thought of doctors using the problem of confidentiality as an excuse, I mean there are - there's a small minority I think of doctors who think that carers are a real problem. But I think that there isn't enough clarity about this whole issue and so doctors are worried that they might do the wrong thing and therefore they'd be disciplined. BARCLAY Dr - Professor McClelland, is there then a genuine fear of litigation even amongst clinicians? MCCLELLAND Well first can I say I think it's excellent to hear carer and user feedback, information is so important in this discussion and I think this is starting to clear the ground. Yes, doctors have concerns about litigation these days, I'm not so sure that concerns about sharing information are highest among their concerns for litigation however, and I think where we have failed and where I have failed in information sharing is probably through not paying enough attention to what the service user wants. BARCLAY So having written these new guidelines do you think the new guidelines will go far enough to address that? MCCLELLAND I think there's already good guidance out there and I think our new guidance and the new information leaflet, jointly by the Prince's Trust and the Royal College of Psychiatrists, does advance the debate, does help to clarify the situation. I do think we are looking at the education and the training of healthcare professionals, including doctors. BARCLAY Just very briefly, do you think there's any case for moving towards systems like they have abroad where case law is taken into account? Very briefly. MCCLELLAND Well yes and you're thinking of the Tyrson [phon.] case in the United States which is now common law requirement. In this country there is no statutory obligation to protect third parties and that particularly set of circumstances - it will ultimately be a matter whether or not an action is taken against the doctor or other healthcare systems. BARCLAY So it's really down to individual circumstances. Professor Roy McClelland, Mary Taylor and Phillip Newhouse, thank you all. Back to the You and Yours homepage The 成人论坛 is not responsible for external websites |
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