TRANSCRIPT - PANORAMA "SICK AND TIRED" MATTHEW HILL A child is taken to a locked psychiatric ward against his parents' wishes. DOCTOR FRANKLIN Why go to those extreme and draconian measures? It's horrendous. M.HILL Doctors divided over the best way to treat children with chronic fatigue syndrome. GEORGIE SHELDON M.E. SUFFERER I came out a hundred times worse. M.HILL Tonight on Panorama: "Sick and Tired" - the families caught up in a medical dispute. Georgie Sheldon developed a brain tumour when she was ten years old. It was removed at one of the county's leading children's hospitals - Great Ormond Street . Although her cancer was cured, her recovery didn't go the way her doctors expected. After a series of viruses, Georgie developed an illness called M.E., or chronic fatigue syndrome. GEORGIE SHELDON I had a few viruses, I had pleurisy and shingles twice, and tonsillitis, and then I began to feel very run down after that, and I think that's how I got M.E. And I get really bad headaches and I'm very tired all the time, and I'm so tired that I can't sleep at night and I have a rest in the day. And then sometimes it's a bit like a vicious circle, it's very difficult to sleep. Lots of aches and pains, and it's very difficult. M.HILL Her extreme tiredness is one of many symptoms which come simultaneously and for months on end. Others include painful muscles, headaches, depression and temperatures. Myalgic encephalomyelitis, or M.E., is now officially recognised. It's the most common cause of long- term sickness in children. But still there is no definitive research to show its cause of the best way to treat it. JULIE SHELDON GEORGIE'S MOTHER It was a horrible shock really because we felt like we'd sort of climbed one mountain with the cancer and she'd had all that surgery and treatment and everything, and then to be told that she now had M.E. was actually quite a shock I remember we thought 'oh no!' you know, we'd known other people whose children had M.E., or have M.E., and we thought oh no, is that what she's now going to have to face. M.HILL In September 1997 her parents were told the best place for their daughter to be treated was again Great Ormond Street, but this time at the Mildred Creek Unit, a children's psychiatric ward. The family saw its consultant, Dr Michael Prendergast. What were your impressions of the Unit when you first went there? JULIE SHELDON Well I think for all of us the number one was the locked door. We thought whoops.. you know, why is the door locked, and that was quite hard initially to realise that our daughter, who we'd got through two years of cancer, was now going to be locked in to a unit. So that was a bit tricky. Our overall sort of physical impressions it was that it was very dark and very poorly sort of laid out and very dirty, and just really sad. I mean the moment you went through the door there was a very sort of dark atmosphere in there. TOM SHELDON GEORGIE'S FATHER Very grim. JULIE SHELDON Very, very sad and depressing sort of place. M.HILL Doctor Prendergast explained his approach to rehabilitation was based on the theory of distracting children from their illness. He told them that by attending school on units, and by staff encouraging the children to be more active, they wouldn't have time to dwell on their symptoms. DOCTOR MICHAEL PRENDERGAST CONSULTANT It requires a very particular attitude amongst the nursing staff who have to be able to jolly along and encourage and distract the children. It requires a particular attitude for physiotherapists to help people to use muscles that they don't believe work anymore. JULIE SHELDON As a family, with our other daughter, we all made a list of sort of for and against going into the unit, and there were not that many 'fors' and there seemed to be a number of 'againsts'. But the main, overriding feeling, I think, for all of us, was that if this was going to be an opportunity for Georgie to receive a rehabilitation programme that would help her get back to normal life we were for that, and Georgie was for that too. M.HILL As part of her routine built around a structured day, the Sheldons had always allowed Georgie to rest. They thought it would be the same at Great Ormond Street. GEORGIE They were very understanding when I went to go and see them, and they made all these promises like that I could have my rests and everything which I'd been having, and they didn't.. later on when I went in there they didn't actually keep those promises. M.HILL So you weren't allowed to rest. GEORGIE Wasn't allowed to rest and they just had this thing about that they didn't understand about M.E., and they didn't believe me when I was feeling unwell. DOCTOR PRENDERGAST If you've ever had an operation, after the operation did you feel like doing very much, and for most people the answer 'no, not at all', but the nurses didn't say well stay in bed and don't try and move till you're absolutely feeling better. They jollied you along and helped you to get going again, and this is the problem of asking children to listen to their bodies and to do what their bodies allowed them to do. Any process of getting fit again, if you're not fit, requires a certain amount of pushing yourself. M.HILL But as the therapy continued, Georgie's condition didn't improve. Her parents became more and more concerned. They say they asked to have a formal case meeting with Doctor Prendergast four times, a request which was never met. JULIE SHELDON Once Georgie was actually in the unit she only saw him twice and for not even five minutes both times. I saw him a few more times in between, not on the unit but in this rooms, but really very little, very little contact. TOM SHELDON I think we would have liked to have seen him actually in the unit because he seemed to be rather divorced from the unit. DOCTOR PRENDERGAST They weren't admitted to hospital to see me. They weren't coming in for psychotherapy or intensive counselling, they were coming in for rehabilitation. So I did see them from time to time, usually when they were about their business, and I specifically wasn't asking them how they felt because I knew that they felt pretty rotten. M.HILL As the distraction therapy continued, Tom and Julie became concerned about the type of patients Georgie was locked in with. Some were seriously disturbed. Five out of ten beds were for youngsters with eating disorders so mealtimes had to be strictly monitored. JULIE SHELDON It became clear quickly that the unit had to work as a whole, and that whole seemed to sort of swing much more towards eating disorders, so you had mealtimes which lasted anything up to an hour and a half with children sort of gagging on their food and crying and actually being humiliated amongst each other. I mean I know because I was sat in on two meals and it was a very, very sad and depressing experience. M.HILL The Sheldon's have always been close as a family, especially the two sisters. Celebrating the good times and sharing the bad. It was a shock when they discovered they would only be allowed to visit Georgie twice a week which is not unusual for child psychiatric units. GEORGIE I got the flu and I was feeling really, really unwell, and mum wasn't allowed to come and see me that day. They wouldn't let her come and see me. M.HILL How did that make you feel? GEORGIE I felt very desperate because I really wanted some TNC - tender loving care. I just wanted someone to look after me and understand. They just didn't understand there at all. JULIE SHELDON That, as I say, is when I lost it a bit and I sort of said well she hasn't been sectioned under the Mental Health Act, of course I can come and visit. And, you know, I became jolly upset as you can imagine. But in a way I was given the impression that even if I did turn up, they wouldn't let me in. The door would be firmly locked and I wasn't going to be allowed to visit. And also, a very young boy who had gone through all the treatment with Georgie, they'd had brain tumours at the same time, went to the unit to deliver a little present and a homemade card which he wanted to give to Georgie and they wouldn't let him in. They kept the door firmly locked. They sort of opened it just to take the card and the gift but they wouldn't let him in, and he was only 8 or 9 at the time, and he didn't understand why Georgie, his friend, was locked in. M.HILL As autumn turned into winter it became clear Georgie was not getting better. Her four week stay was extended to ten and she became yet more depressed and desperate. GEORGIE I was very depressed - very, very depressed, and I was very.. quite muddled and confused. I was traumatised. I was very traumatised from this place because it was just so different, and so horrible. They were just mean in there. I hadn't got an eating problem and I wasn't disturbed. I just wanted to get better and this was the way we thought they could help me to get better and I came out a hundred times worse really. M.HILL Did you do anything to show how unhappy you were? GEORGIE Sometimes I hurt myself as well because I just felt that was the only way I could really let my anger out so that's sometimes what I did. [Diary Georgie: 9th October: I felt it difficult to get up this morning because I didn't feel very well. I'd slept quite badly. Doctor Prendergast said I would have to stay until Easter which is four months time. I thought I'd be coming home at the end of this month. I'm feeling very unhappy and upset.] JULIE SHELDON During all that time Georgie was becoming more and more and more distressed and very, very depressed until the final diagnosis was severe clinical depression which, by Doctor Prendergast's admission she didn't have when she went into the unit. So she was clearly becoming much, much, worse by being in there. M.HILL After ten weeks the Sheldon's had had enough. They took Georgie home against Doctor Prendergast's wishes. DOCTOR PRENDERGAST I think she would have continued to make progress has she stayed, and the development of depression was a set back, and I'm not sure in someone who has already been depressed one can attribute it to her presence on the word. TOM SHELDON You see it was sort of sold to us very much as the Mildred Creek Unit was a rehabilitation unit. What it turned out to be was a psychiatric unit, and I think if we had known that from the outset well we wouldn't even have considered it to be honest because we knew that Georgie didn't have a psychiatric problem and that M.E. is not a psychiatric illness. But you just start to get sort of sucked in. M.HILL Tom's belief that his daughter's illness wasn't psychiatric was, he discovered, at the heart of an intense debate in the medical profession. On one side doctor's like Michael Prendergast believe M.E. needs to be treated as a psychological illness. One of the most vociferous critics of this approach is Doctor Nigel Speight from Durham. He's diagnosed and treated around 100 children with M.E. The paediatricians says there is no evidence to back up the principle of distracting children from their illness. He is especially concerned about pushing youngsters beyond what they feel comfortable with. Some research on adults does suggest this can help. No such research has been carried out on children. DOCTOR NIGEL SPEIGHT There are some children that are very severely ill who there is no question as to whether they are going to have bed rest or not. They are absolutely moribund and no-one, doctor or psychiatrist, could make them get out of bed because they're in such pain. So it's not a question of advising bed rest for those people. They just can't do anything else. DOCTOR PRENDERGAST. This doesn't acknowledge that if you don't do very much, then you can get easily into a spiral of doing less and less, and if you attempt to do more, that would be difficult. Some children feel the burden when they're going to the toilet. If we say well that means you got up too soon, go back to bed. They're likely to stay in bed really quite a long time. M.HILL But your critics would say your advice would seem to be just sit back and rest and do very little. What's your response to that? DOCTOR SPEIGHT I don't pretend to have a cure. I don't believe there is a cure at the moment and if there was a cure we would have all heard about it. I would say that some of my most severe cases recover spontaneously on their own. I don't take any credit for that, but at least we don't do them any harm while they're recovering. M.HILL Panorama has conducted the first survey of its kind which draws upon the experiences of hundreds of youngsters with M.E. Its findings reveal the extent to which doctors in this country are recommending, or even enforcing, psychological treatment though its benefits are far from accepted or proven. It even shows how families believe their children have been harmed by such treatment. Doctor Alan Franklin is a leading expert on M.E. He's on a government working group trying to find some middle ground between these polarised views. He says there's a desperate need for more scientific evidence. DOCTOR ALAN FRANKLIN CONSULTANT PAEDIATRICIAN The first thing is the lack of adequate research to show that one way is necessarily better than another. This is, in a way, a bit unrealistic because individuals are different. They are going to respond differently, they're going to behave differently. In some cases the psychiatric programme of graded exercise and cognitive behavioural therapy can be helpful. I don't deny that in some cases it can be helpful. But in many cases it is applied rather blankly. M.HILL Panorama sent a survey to more than 700 parents of children with the illness who are registered with the charity 'Action for M.E.'. Nearly 60% of families were told by doctors that their children's illness was caused by psychological problems; 5% agreed to undergo psychological treatment. Their parents all reported it either had no effect or made their children worse. Many told us they'd been offered psychological treatment but refused. One family, who can't be identified for legal reasons, found themselves facing accusations of child abuse for not accepting such therapy. Their son developed M.E. four years ago when he was 10. BOY M.E. SUFFERER They were running blood tests on me and things to see to see if I had glandular fever and things which didn't come up with anything, and when we mentioned (depending on the doctor) when we mentioned it was M.E. they were a bit sort of.. "Well, you know, children don't get M.E. It's not the sort of thing you get" and "I don't know anything about that". M.HILL The family, from Solihull, then decided to go to Doctor Franklin for his specialist advice. He doesn't believe in pushing children beyond what they say they are physically capable of. DOCTOR FRANKLIN Some children have realised that by exercising, their symptoms get worse, so they stop exercising. And so another method of treatment is to plan with goalposts, as it were, to achieve a certain amount each weed. M.HILL Concerned about his absence from school the education authorities called his parents to a meeting. Despite several attempts to go back to school, the family told them the physical effort of traipsing from classroom to classroom made him worse. Instead of accepting Doctor Franklin's advice, education officials decided to seek another opinion from a community paediatrician who had very little experience of M.E. His name is Doctor Alan Stanton. BOY'S MOTHER At the outset we explained to him that our son was under the care of Doctor Franklin, the consultant paediatrician, and that we were very happy with his advice and following his form of treatment, and I can recall that Doctor Stanton actually said to us that he wanted to explore alternative treatment and he wasn't necessarily going to agree with Doctor Franklin. M.HILL After going to a talk by Doctor Prendergast, Doctor Stanton decided it would be best for the family to follow the approach recommended by the Great Ormond Street psychiatrist. BOY'S MOTHER He'd attended a lectured by Doctor Prendergast and even quoted that based on research - and I really have no idea what research he was referring to - based on research that there was a form of treatment that could, in effect, cure our son. M.HILL The treatment was to be at the psychiatric ward of Birmingham Children's Hospital. This was where Doctor Prendergast had worked before Great Ormond Street. The ward, which has now been relocated, still applied his approach to the illness. The child's parents refused this treatment outright. BOY'S MOTHER I went to a talk by the ward team from the psychiatric ward at Birmingham Children's Hospital, a talk on how they treat children with M.E., and that confirmed that they were treating it as a psychological illness. They in fact volunteered the fact that the treatment they offered was unproven, and very strangely they said they had 100% success rate, and on questioning they didn't seem to be able to describe the illness that they were curing and yet they were saying they had 100% success rate in curing it. M.HILL In 1997 Doctor Stanton referred the case to the Child Protection Unit. The boy was placed on the 'At Risk Register' under the category of neglect. It was thought his health was suffering because his parents were not prepared to follow Doctor Stanton's advice. What was your reaction to that? BOY'S MOTHER Total shock, outrage and anger really - disbelief that a doctor could actually want to refer us under that particular law because we weren't following his advice and because we were following another consultant's advice. We just found it quite extraordinary that one doctor should try and use that law to overrule the advice of another doctor. M.HILL What did you feel you were actually being accused of? BOY'S MOTHER Child abuse. BOY'S FATHER Yes, exactly. Child abuse, the same sort of Act that's used when people beat their children and do all sorts of unspeakable things to them. We were being accused of that because our son was ill! Unbelievable! M.HILL Throughout this time Doctor Franklin believed in-patient treatment at a psychiatric unit was unsuitable. Was it appropriate for Doctor Stanton to refer the child under Section 47 of The Children Act? DOCTOR FRANKLIN No. M.HILL Why not? DOCTOR FRANKLIN I didn't think that there was any indication from the family that they were preventing him from getting better. M.HILL Eventually the family went to one of the country's leading child law experts who took their case to judicial review. Andrew McFarlane challenged the legality of using The Children Act to enforce one method of treatment over another. ANDREW McFARLANE, QC It wasn't a proper matter for the Social Services to be asked to consider under the Child Protection procedure. It was a straight dispute between one school of medical thinking and another. M.HILL Once in front of the judge, Social Services backed down. There was no longer a need for a ruling. But if the family had lost, the boy would have been forced into psychiatric care. BOY'S MOTHER We felt we had no option. We had to protect his interests. We were up against people who were so unreasonable. You tried to reason with them and they hadn't listened. We had no option. If we hadn't have done what we'd done, and this was in fact said by the judge in the final judicial review hearing, that if we hadn't have taken the legal action we had, there would have been a wardship. M.HILL What would that have meant for you? BOY'S MOTHER It would have meant our son being taken.. our losing our responsibility for our son and him being taken into a psychiatric ward against his wishes and against our wishes and against the advice of our doctors who are experts in the illness. M.HILL The boy is not well enough to go to school and is educated via computer. Doctor Stanton has written to Panorama saying he still believes the psychological rehabilitative approach is best. Solihull Social Services and Doctor Stanton have refused to be interviewed. The family complained about him to the General Medical Council. While the disciplinary body say Doctor Stanton was not guilty of serious professional misconduct, they've told him that he was wrong to have referred the case to Social Services without informing the family's own consultant. Our survey shows a number of families of children with M.E. are facing similar threats; 7% of them said their children had been subject to child protection proceedings. It's bad enough to be accused of hindering your child's recovery, but our survey shows some parents, like Helen McDade from Scotland, have been accused of something far more sinister. Her daughter, Morven, who is now 9, was only 5 when she became ill. MORVEN McDADE M.E. SUFFERER To start off with I had a very sore throat and headaches and I used to feel dizzy. And then after I'd had the illness for a while I felt sick practically all the time. I used to feel all weak and I'd feel all sore everywhere. M.HILL After seeing several doctors Helen McDade found it impossible to get a diagnosis of M.E. But Morven's symptoms became worse. Mrs McDade was then astonished to hear her doctors simply didn't believe the condition existed in children. HELEN McDADE She had so severe abdominal pain. On two occasions at night I called the doctor out and we have never called the doctor outside hours, never. And the second time the doctor (who was sympathetic) said "Well she should go to hospital". M.HILL Unknown to her the junior doctor who saw Morven for pain relief had noted Helen herself may have a relatively new and extremely rare condition called Munchhausen Syndrome by Proxy. The doctor was effectively asking if she was deliberately making her daughter ill, or getting Morven to make it all up. HELEN McDADE MORVEN'S MOTHER Well I was very angry because there was no indication that I was making things up. You know, my daughter was seriously unwell and I didn't see why they could have come to this conclusion. They hadn't investigated our family at all, and talked to her about it or anything, and I realised that it was very damaging, from our point of view, of trying to get help for Morven's symptoms. M.HILL Even though Morven has improved enough to return to school, her mother is still trying to get the Munchhausen's reference removed from her medical records. HELEN McDADE There's no more serious allegation can really be made against a mother. It's very damaging. You can't refute it because it's not out there in the open. It's in there in the notes for other doctors to see it, and it's only by accident that I knew that and tried to get it removed. M.HILL Mrs McDade then saw Nigel Speight, the doctor who most strongly disagrees with the psychological approach. He showed her the junior doctor's letter suggesting Munchhausen's which he believes should never have been used. DOCTOR SPEIGHT It's like being committed to a psychiatric hospital when you're not mad. It's a very easy diagnosis to throw around. It's a very difficult one to disprove if you're the person labelled with it. M.HILL Panorama's survey shows 15% of families were told that their psychological problems were causing their child's illness. It also reveals that a high proportion of parents are branded with Munchhausen Syndrome by Proxy. The figure stands at 4%. This represents one in eighteen families surveyed. Nationally, the Syndrome affects just one in a hundred thousand families. A year ago Doctor Prendergast, the psychiatrist whose opinions have influenced doctors before, gave a talk at a Scottish hospital. Helen McDade went along with her local campaign group. They were shocked by what they heard. HELEN McDADE The whole lecture was very jocular really. There were practically no facts, scientific studies involved at all, but he tended to make jokes about things which if you stopped and analysed them you would say that's a) not funny and b) surely that suggests this child is really ill. So for instance he had a slide, he put a slide overhead up of a little girl dressed in a woollen winter coat and a hat and gloves. And he said "This is how this girl turned up to my surgery on a sunny May day dressed like a granny" and everybody laughed. And anyone with any sense would say well surely she was ill. DOCTOR PRENDERGAST I have got a slide of a girl with a coat on, on a warm day, and its pointing to the incongruency Now the difficulty is that incongruency is very mixed up with humour, humour is just a position of incongruency. It's not making fun, she wasn't identifiable. Are these the M.E. Action people who sneaked into one of my lectures in Scotland? M.HILL That's right. Isn't this offensive though to say.. you know.. couldn't she perhaps have been feeling very cold, one of the symptoms of M.E., that's why she wore.. DOCTOR PRENDERGAST It's not offensive, it's not offensive. She did look like a granny. M.HILL Doctor Prendergast was asked what he'd do if parents resisted psychiatric treatment. Helen McDade said the psychiatrist was robust about invoking legal action. HELEN McDADE He said "I'm not a believer in using care orders. I think you should just go straight to the High Court and in that way you have someone else looking out for them" so what he was really saying was his aim, if there was any conflict with the parents, was to get a High Court order. This is not a fatal illness and yet he was talking about taking orders, removing parental rights from people. M.HILL And it was to the High Court where Doctor Prendergast went with Social Services just over a year ago to enforce their view that he should treat a 16 year old boy against the wishes of the patient and his parents. The teenager had no choice as the full force of the law had been invoked. We can't identify the boy for legal reasons. His parents were too afraid to talk to us because of legal restrictions placed on them. In 1996 the 13 year old boy's health deteriorated. His local consultant diagnosed M.E. and brought in Doctor Prendergast for a second opinion. Doctor Prendergast recommended his programme of rehabilitation aimed at increasing his mobility. It is claimed the exercise made him worse. The local doctors then sent the boy to Great Ormond Street for a further assessment. On seeing the unit his parents wouldn't let him be treated there. The doctors continued to push for treatment with Doctor Prendergast. His parents went to another consultant for a second opinion. DOCTOR FRANKLIN He complained that he couldn't see, that he couldn't move. He was lying in bed and he couldn't stand; that he couldn't eat, he couldn't feed himself; that he couldn't think properly; he couldn't look at television; he couldn't read; that he was being totally.. he had become totally cut off by the illness in his view. M.HILL By the summer of 1997 the boy was being tube fed in his local hospital as he couldn't swallow. Local doctors were so convinced he had to be treated at Great Ormond Street they were prepared to push for this with Social Services, even if it went against the parents' wishes. DOCTOR PRENDERGAST Doctors have an obligation to discuss anxieties about children whose development may be being avoidably impaired. We discuss at our planning meetings with Social Services, Social Services decide whether or not they agree with the concern, and if they do, then they go to court and then the court decides. M.HILL After six months of legal action a High Court judge overruled these parents' wishes and compelled the 16 year old to be treated by Doctor Prendergast. They boy was made a ward of court and the state became his legal guardian. DOCTOR FRANKLIN I think in Britain in the 1990s it's quite a ridiculous situation. I mean this is not a boy who was going to create enormous damage to anybody, or cause a lot of trouble, so why go to those extreme and draconian measures to lock him up and to treat him in a way that wasn't going to make much difference. M.HILL What do you think of that? DOCTOR FRANKLIN I think it's horrendous. I mean I wouldn't be part of it. M.HILL And neither would his father. He decided to take the law into his own hands. He absconded to Europe with his son. Interpol was alerted. DOCTOR FRANKLIN The police turned up on my doorstep one morning and said did I know where he was and I didn't at that particular time. I think if somebody forces you to do something that you really believe is not going to help you, your efforts are to escape, and I've met it in other places where parents have suddenly got up and moved house out of the county to get out of the range of the people who are expecting them to have treatment which they didn't want. M.HILL His father returned alone to give himself up to the UK authorities leaving his son with his mother abroad. He was immediately arrested for contempt of court and was put in the cells. He was told that the child would have to be taken back to Great Ormond Street by the end of the week. The boy's mother immediately brought her son home. At the crack of dawn, far earlier than the family had been told, the mother was wakened by police officers and social workers who'd come to take her child to Great Ormond Street. She wasn't allowed in the ambulance with her son. DOCTOR FRANKLIN We have been taught for years in paediatrics that the parents should be involved at all stages, and that to exclude them in the way that the parents were excluded, only allowed to visit twice a week, seemed to me a bit extreme, even for a boy who may have psychological problems. It's only a small step away from saying 'this is a Munchhausen situation, the parents are actually making this child ill', which from my assessment of the family was not true at all. M.HILL It was two months into his stay at the Mildred Creek Unit when the 16 year old made friends with another patient who was also suffering from M.E. VANESSA BULL M.E. SUFFERER When I arrived at Great Ormond Street he'd already been there for a couple of months, and obviously was very unhappy about the situation. But the doctors weren't listening to him and weren't taking his views into account that it wasn't a psychological illness, he wasn't depressed. He was perfectly happy at home and they weren't listening to him and wouldn't take into account his physical problems and wouldn't believe he wasn't making them up. M.HILL As Vanessa got to know the boy, she began to realise just how much his health had deteriorated. VANESSA He'd been very into sports, academically a high flyer, good social group, good friends, enjoyed school, and very much the same as me in those respects. Then everything had gone and it was very obvious that if he'd been able to get up and walk he would have done. But the nurses didn't see that. They saw him as being awkward and stubborn. M.HILL The boy had to spend seven months at Great Ormond Street. He was given Doctor Prendergast's rehabilitation programme which involved staff regularly attempting to get him up and about. He also had to sit with anorexic patients at meal times. VANESSA He was put on a Zimmer frame to try and help him because when he went in he was able to walk. As he was in he got worse and worse and they put him in a Zimmer frame and as he was sort of totally exhausted, his knees scraping the floor, his chin sort of touching the bar, when the consultant said to him "Do you know how much your bed is costing us?". M.HILL The boy wasn't allowed to see his own consultant, but Doctor Franklin has listened to tapes he made of his experience whilst in Great Ormond Street. DOCTOR FRANKLIN He was extremely upset. I listened to a number of tapes which he dictated while he was in hospital. And he was very upset by the whole thing. They were trying to get him to get up and do things. They were threatening him in all sorts of ways about him going down into the town and so on which he found totally unrealistic. He, I think, really hated the whole regime and therefore didn't cooperate at all, so that there was no real, if you like, engagement between him and the medical people who were there. M.HILL After being separated for 8 months the child's parents successfully went back to the courts and regained wardship. We can't report what happened at that hearing or what conclusions the judge came to as the proceedings happened behind closed doors. Doctor Nigel Speight has been to visit the boy since his experiences. DOCTOR SPEIGHT He is suffering from severe M.E. and posttraumatic stress disorder as a result of his experiences in that hospital, and he has lost total faith in the medical profession. M.HILL How can you be so sure of that? DOCTOR SPEIGHT Even though his parents had great faith in me personally for the support I'd given them, they had great difficulty conveying that faith, and because I was a doctor he was very reluctant to even see me. He eventually consented to talk to me briefly and I respected his wish not to speak to me for too long. M.HILL What sort of symptoms was he displaying? DOCTOR SPEIGHT Well he's still bedridden, lying in a darkened room, and he still has flashbacks for the time he was in that unit, and he still cries if people open the door, and if he hears that a social worker is going to visit the house he goes into a very regressed state. M.HILL While the child no longer receives treatment at Great Ormond Street, Doctor Prendergast stands by his approach. He left the hospital last year saying his M.E. patients' progress was being affected by living with severely anorexic children. DOCTOR PRENDERGAST Between my severely ill patients and those patients there were too many seriously ill patients on the ward, and I think that was slowing down throughput. I don't think people.. my patients weren't getting better, they weren't getting better as fast as I thought they ought to be getting better. M.HILL What was Great Ormond Street's response to your concerns? DOCTOR PRENDERGAST Initially nothing for about ten months and then a series of meetings, and then I was told to stop being difficult. M.HILL What did you think about that? DOCTOR PRENDERGAST I thought I didn't want to work in an institution that wasn't working on improving itself. M.HILL Is that why you left? DOCTOR PRENDERGAST Yes. I got another job and left. M.HILL The Doctor who took over at Great Ormond Street, Russell Viner, is now trying to find out how effective his treatment of children with M.E. is through a research project. He now sees children mainly as out-patients in a different part of the hospital. But if they fail to make progress, Doctor Viner would have no qualms about still referring them to be treated alongside patients with eating disorders on the psychiatric unit. DOCTOR RUSSELL VINER In this hospital at that time the psychiatric unit was the only place where you could admit patients for a couple of months to do long-term physiotherapy rehab on them. It wasn't possible in any other ward. We would love to have a separate unit and Doctor Prendergast was very keen to have a separate unit to treat M.E. type patients. Unfortunately budgetary restraints didn't make that possible. M.HILL But with this mix, isn't there a risk that the young child would actually copy the eating disorders behaviour, or self-harm for instance, in such a closed unit? DOCTOR VINER I think that's very unlikely. That's certainly not a problem we've ever experienced. M.HILL As hospitals like Great Ormond Street adhere to their approach, the debate is becoming more entrenched. A current government working group has no funds to even study the best way to treat children. Until they do, thousands may be given untested treatment which they may not want. GEORGIE No child deserves to be treated like we were there. So yes, we were very upset and.. M.HILL You must have been relieved when your mummy and daddy came to take you away. GEORGIE Oh yes, I was very.. I was just relieved. I wasn't even happy, I was just so relieved that they were going to take me home. M.HILL Georgie is slowly improving. The Sheldons remain convinced their experience casts doubt over such treatment. JULIE SHELDON I feel as a family we went through a very, very unnecessary time that nearly destroyed us all. I hope it's not too dramatic to say that but that's what it felt like. And I just feel the whole approach was wrong, and it was wrong for us, it was wrong for Georgie, it was wrong for the family, it was wrong for the illness that she had. _____ There are more details on our website at bbc.co.uk/panorama. Next week 'Pops on Drugs'; what the police really think about drugs laws. 16