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You and YoursÌý- Transcript 91Èȱ¬ Radio 4 |
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TX: 28.10.04 - Autism Misdiagnosis Ìý PRESENTER: SHEILA MCCLENNON Ìý |
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THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. MCCLENNON All this month we've been examining autism and what's become clear is how complex the condition is. Today we're looking at diagnosis and misdiagnosis. One type of autism is Asperger's Syndrome, its symptoms can include reduced social skills, behavioural problems and anxiety. But we've been hearing from a number of families concerned that their child with Asperger's has been misdiagnosed with schizophrenia when they're older. The consequences of getting a diagnosis wrong can be very severe. Ìý Sally Preconfreid's [phon.] 31 year old son Nick was diagnosed with Asperger's by the Bethlem and Maudsley Hospital in London when he was 14. At 18 he was put under the care of his local adult psychiatric services. However, six months later Nick had a very disturbing experience when he and Sally found his grandmother dead and he witnessed his mother attempting resuscitation. Ìý PRECONFREID [PHON.] Six weeks after this he had what was quite obvious to me was a reaction to his grandmother's death but he was terribly agitated, terribly anxious, I was quite worried about him, rang the psychiatrist - could we see him? We went along and within a few minutes this man said - He has schizophrenia. Ìý MCCLENNON So he dismissed the autism diagnosis and replaced it with schizophrenia? Ìý PRECONFREID Yes. When we had the diagnosis of schizophrenia we were then into neuroleptics - neuroleptics are major tranquillisers or antipsychotic drugs. They give very bad side effects to anybody, even somebody who - even with people who have a mental illness which these drugs can help, the side effects are pretty alarming. Ìý MCCLENNON So what happened to Nick once he was on this neuroleptic regime? Ìý PRECONFREID Well certainly no improvement in his anxiety, his agitation. His behaviour, which has always been difficult, he then started being aggressive and also started self-harming. We on several occasions had to take him to our local hospital to have his arm stitched where he'd self-inflicted cuts, deliberately broken glass and run the glass on his arm. Ìý MCCLENNON Now it was your nurses and your GP who raised the question as to whether he indeed was schizophrenic. Ìý PRECONFREID Yes. You have to bear in mind I was also in shock - my mother's death - and I went along with this diagnosis for a few months until our GP called us to the surgery, which is where Nick was having - being administered his injections every two weeks and she said - Sally, neither the practice nurses nor I and I don't believe you either think Nick has schizophrenia, it is Asperger's, I want to refer you back to the Bethlem and Maudsley. We returned to the Bethlem and Maudsley where they confirmed the diagnosis - their diagnosis of Asperger's Syndrome and then he said there were no schizophrenia symptoms. Ìý MCCLENNON Did you then just revert back - did he come off the drugs, did he come off the medication and just revert to having Asperger's? Ìý PRECONFREID No he didn't because already the drugs had started to do an awful lot of harm to him. As Nick himself says if you give antipsychotic drugs to somebody who does not suffer from a psychosis they will soon develop one. He became quite a wild person. Ìý MCCLENNON And you put that down entirely to the misdiagnosis and the drugs he was given as a result? Ìý PRECONFREID Yes, there was never any violence to himself, to objects or to other people until Nick had been on these psychiatric drugs. Ìý MCCLENNON What has this misdiagnosis done to your son? Ìý PRECONFREID Well it's perhaps too dramatic to say it has ruined his life because I'm still very hopeful for the future but so far it has ruined his life, it's devastated his life. He's missed the whole of his twenties, he's been in some horrific situations, he's always - he's been on a mental health section for over 10 years now, which has meant that has he's been away from us, he's been locked up, sometimes in wholly inappropriate placements. Ìý MCCLENNON Do you have some sympathy with the doctors in that this is a very difficult situation for them and in fact the misdiagnosis of schizophrenia was sort of in good faith? Ìý PRECONFREID To a certain extent yes. Asperger's has not been on the map for very long. I always said I could not expect any psychiatrist to be an expert on every problem of the mind. What I cannot forgive doctors for is even if they admitted they knew nothing about Asperger's they were so loathe to consult with people who may know something about it. Ìý MCCLENNON Sally Preconfreid. Well I'm joined from our Millbank studio by Angela Browning, MP, who's a member of the all party group on autism and vice-president of the National Autistic Society and Professor Sheila Hollins who's vice-president of the Royal College of Psychiatrists. Professor Hollins, Sally is quite clear there that her son was misdiagnosed with schizophrenia, despite having Asperger's, is this happening often in your experience? Ìý HOLLINS I think it's very difficult to know how often this is happening. It's a tragic story and for it to happen to even one person is too many people for that to happen to. One of the things the Royal College of Psychiatrists is doing this year is having a campaign with the Princess Royal Trust for Carers about better partnerships with carers and in future carers will be involved in the training of all psychiatrists with the hope that we will learn better to listen to the experience of carers themselves. Ìý MCCLENNON Well we're going to look at how the situation can be improved through training and shared information in a moment but Angela Browning I mean are there official figures about how many of these misdiagnoses are made, I mean it's something you've raised in the Commons repeatedly? Ìý BROWNING Yes. No there are no figures and I have repeatedly asked ministers that they should be collated because the - unfortunately the story we've just heard about Nick is not a unique one, these cases are out there. And in any other area of medicine for a professional to ignore an existing diagnosis from another professional if they don't have an expertise in that area and not take a second opinion or seek additional help would be quite unacceptable and yet somehow with autistic spectrum disorders and Asperger in particular, I say particularly I think in provincial psychiatric hospitals, we've heard about the Bethlem and Maudsley which is one of the centres in the country where they are able through their expertise to unscramble the different behaviours but that isn't out there throughout the country. Ìý MCCLENNON When you use the term provincial Angela, what do you mean provincial as location or in latitude? Ìý BROWNING No around the country. I mean we can think of several teaching hospitals, we can think of several hospitals in Greater London in some of our larger cities where there is certainly this expertise among psychiatrists. The difficulty is particularly with adults, we all accept that as with any other person somebody with autism can develop schizophrenia, so sometimes but in no more cases than among the normal population a psychiatrist would be presented with a person with an autistic spectrum disorder who had actually developed schizophrenia. But all too often we have the situation that Nick found himself in and as you heard from Sally once the medication is given and they work their way through a list of drugs because the first one clearly doesn't work then additional damage is done to that person and I just repeat - if you had a cardiac condition you wouldn't expect an orthopaedic surgeon to just ignore what a cardiac surgeon had said about your condition. Ìý MCCLENNON Okay let's bring in Professor Hollins. I mean is it easy to confuse the two conditions, I mean if someone is a professional psychiatrist should they be able to distinguish between a mental health condition and normal autistic behaviour? Ìý HOLLINS It is - it is difficult sometimes to distinguish between autism or the experience of autism and a psychotic disorder when the person presenting to the psychiatrist is acutely distressed. So for example anxiety and the way it presents in somebody who's autistic might appear to be a psychotic episode. And one of the difficulties a psychiatrist has is that if the person is presenting with psychosis it's very important to treat that quite quickly because the prognosis, the future outcome of a psychotic illness, is better if you're treated quickly. Ìý MCCLENNON The outcome isn't better if you're treated wrongly. Ìý HOLLINS Well but then you have to take a risk as to whether or not to treat whilst you clarify the diagnosis and possibly delay diagnosis whilst you search for somebody with that extra specialist expertise. I would expect all psychiatrists to have - at the moment they don't - but I would expect in the future that all psychiatrists would have enough knowledge and expertise to be able to recognise autism and Asperger's Syndrome. But there will always, I think, need to be a secondary level of expertise which is about distinguishing really complex situations where somebody does have a mental illness as well. Ìý MCCLENNON Is there a willingness to seek that second opinion at the moment? Ìý HOLLINS Well I mean people vary and to some extent I guess it depends on whether they - how much awareness they have of what it is they don't know and that's one of the difficulties. Ìý MCCLENNON Angela Browning, whose responsibility is it to monitor psychiatrists dealing with patients with Asperger's? Ìý BROWNING Well I obviously want the Department of Health to be involved because they are the lead department in government and legislation that - we're looking at, at the moment - the Mental Capacity Bill and the draft Mental Health Bill - I hope will help to firm up some of the safeguards in situations like this. But I am encouraged, I have to say, at the progress that there is, for example, with the Institute of Psychiatry in looking at people's rights to things like a second opinion. The only thing I would say is that there needn't be a delay in drawing up a recognised list of people who have authority in this area to whom another psychiatrist could seek a second opinion. We don't have that list. I've asked the minister for that list to be drawn up and put into the public domain so that we could all see who are the people recognised throughout the country as people who have this specialism and I don't think that would take very long to put together if the will was there to do it. Ìý MCCLENNON Is the will there Professor Hollins? Ìý HOLLINS I think the will is definitely there. The Royal College has just put out a paper for consultation within the college called Psychiatric Services for Adolescents and Adults with Asperger's Syndrome. And we have also recently started a new CPD online journal which will include I'm quite sure in the near future a module on autism. Ìý MCCLENNON Okay then. Professor Sheila Hollins and Angela Browning thank you both for joining us. And I should point out that the Health Minister, Stephen Ladyman, will be on tomorrow's programme. Back to the You and Yours homepage The 91Èȱ¬ is not responsible for external websites |
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