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BBC Radio 4: Children with ME

anniekim

Senior Member
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779
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U.K
" BBC Panorama programme "Sick and Tired" on 8th November 1999 revealed the harrowing stories of several families whose very sick children had been removed from their homes and locked away in "secure" psychiatric units where minimal parental access was permitted." Did people at the time say that was a start for more investigation and exposure by the BBC? It clearly wasn't.
 
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13,774
" BBC Panorama programme "Sick and Tired" on 8th November 1999 revealed the harrowing stories of several families whose very sick children had been removed from their homes and locked away in "secure" psychiatric units where minimal parental access was permitted." Did people at the time say that was a start for more investigation and exposure? It clearly wasn't.

My understanding is that this programme led to a lot of pushback from the UK medical establishment, who condemned Hill's work on that as being irresponsible. I think that they're going to be in a much weaker position to pushback now.
 
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2,391
Location
UK
I don't think I'm confounding you with anybody. Over the course of this thread you've repeatedly expressed your disappointment that we aren't expressing our 'rage' sufficiently - you explained just a few posts back that you think we must 'feel the rage to advocate' and that we must 'harness our inner rage' to bring about change. I'm saying that in terms of how we respond to this particular BBC programme - which is what this thread is discussing after all - that's an unhelpful attitute to be advancing.

Even if you're not sending aggrieved emails to the BBC yourself, someone else could read your tirade against "the lily livered operatives who have one foot in the SMC camp and another at the BBC" and very easily conclude that this what you're actually advocating. I'm explaining why - in my opinion - that would be a self-defeating course of action right now.
Let's hope these journalists and their bosses are made of stern stuff - they'll need to be anyway to resist all the pressures that will surely be descending on them from the SW quarter, in efforts to prevent the PACE investigation happening. I'd be gutted and furious if we ended up inadvertently making things even more difficult.
 

anniekim

Senior Member
Messages
779
Location
U.K
My understanding is that this programme led to a lot of pushback from the UK medical establishment, who condemned Hill's work on that as being irresponsible. I think that they're going to be in a much weaker position to pushback now.

Yes, read this on stonebird website "Following the Panorama programme, Harvey Marcovitch, a consultant paediatrician and Editor of Archives of Disease in Childhood, wrote an article in the British Medical Journal 13 stating "BBC's Panorama performed a hatchet job on Dr Michael Prendergast, previously a child psychiatrist at Great Ormond Street Hospital (who) uses active rehabilitation as a treatment for chronic fatigue syndrome....It's about time the (medical) profession hit back at those who are vilifying our colleagues". http://carersfight.blogspot.co.uk/2011/08/psychiatric-abuse-of-children-with-me.html

( from Stonebird "on 8th November 1999, it seems that another paediatric psychiatrist who subscribes to the belief that children with ME/CFS should be treated by "active rehabilitation" is Dr Michael Prendergast, formerly of Great Ormond Street Hospital, London, and that Prendergast has used an experimental and scientifically unproven "active rehabilitation" regime for children with ME. The programme exposed the quite appalling treatment carried out by Prendergast and it revealed the harrowing stories of several families whose very sick children had been removed from their homes and locked away in "secure" psychiatric units where minimal parental access was permitted."

And "Wessely rushed into electronic print to support Marcovitch 14, stating "I congratulate Harvey Marcovitch on his exposition used by some activists to hound those paediatricians who are prepared to consider that parents do not always act invariably in the best interests of their children"; referring to the BBC Panorama programme, he said "This was a particularly biased and pernicious account of an area where balance and reason are needed, not polemic and distortion.....Any parent who watched the one-sided Panorama programme might be forgiven for thinking that the management of CFS in children involves coercion and the Courts...."
 
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13,774

TreePerson

Senior Member
Messages
292
Location
U.K.
Looks like it: http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm

He faced a lot of criticism from authority figures for trying to speak up about this back then.

I could understand him being frustrated if he's now facing criticism from a few advocates who don't really understand how hard it is to get the BBC to do anything good on ME/CFS.
Well good for him for coming back to it. It does throw a bit of a different light on it if he was demonised for the first programme.
 

lilpink

Senior Member
Messages
988
Location
UK
Even if you're not sending aggrieved emails to the BBC yourself, someone else could read your tirade against "the lily livered operatives who have one foot in the SMC camp and another at the BBC" and very easily conclude that this what you're actually advocating. I'm explaining why - in my opinion - that would be a self-defeating course of action right now.

Completely disagree but there's no point in continuing this particular discourse as we're clearly on very different sides of this particular fence.
 
Messages
2,125
Well good for him for coming back to it. It does throw a bit of a different light on it if he was demonised for the first programme.
This is beginning to make a bit more sense now. I have just been trying to watch a number of vids on Youtube (for some reason unable to get passed the first few minutes, ah the joys of modern technology) of various talks by Nigel Speight.
He does reference a number of things like 'the film', 'nothing has changed, in fact they are worse', and also mentions some of the issues raised in the Panorama documentary (although he is always careful not to mention any names).

I did watch the Care4ME presentation (35 minutes, including a number of question and answers) before listening to the File on 4 piece and I guess I was expecting to hear more of what I had heard in the presentation in as much detail but maybe presented in a more 'newsy', 'not so familiar with ME' way. Plus, there had been some hype about it,(the fact he had interviewed Ron Davis etc) and the Radio Shows/phone-ins earlier in the day. So yes, I was disappointed.

But it is possible his choice of clips (ie which/whose interviews to use) were deliberately chosen to 'enable' the program to be aired; if that is the case then it was a clever bit of editing to try and get the underlying message(s) thro.

I'm not 'changing my tune' just looking at it differently.

Ideally I'd like to see something like the 10 minute Carte Blanche program being aired in the UK.
 

A.B.

Senior Member
Messages
3,780
LOL - why is everything so weird?

I can't believe that the PACE researchers would do anything like that. I guess it is possible they could have teenage kids who would though? Or some unconnected 'supporter'?

It's all rather bizarre isn't it.

I'm not saying they are doing it, but it can't be excluded. They don't need to actually fabricate evidence though, they can just claim that FOI requests are harassment. Easy enough.

On the other hand, during one of the conferences Crawley showed a hate email she had supposedly received, which said "I'll cut your balls off" and I'm wondering if that's real. Surely anyone sending hate mail should know who they are sending it to, and that Crawley is a woman? Such a bizarre hate email would be perfect to demonstrate just how silly and unreasonable the opposition is to an audience.

That poster on sciencebasedmedicine identified herself as psychology student with CFS. Maybe there was a bit of pressure to show she's not one those patients, perhaps with resentment due to disagreement about the causes of the illness? I don't know.
 
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13,774
That poster on sciencebasedmedicine identified herself as psychology student with CFS. Maybe there was a bit of pressure to show she's not one those patients, perhaps with resentment due to disagreement about the causes of the illness?

Do you have a link to it? - messages on that recent SBM page seemed messed up for me. edit: No worries @A.B. here stuff is: https://disqus.com/home/discussion/...ded_exercise_therapy_how_/#comment-3247154168

Looks odd, but does seem someone was busted fabricating threats to Wessely.
 
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Countrygirl

Senior Member
Messages
5,429
Location
UK
Here is the transcript to the 1999 Panorama programme:


http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt

The following is just a short extract.



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!
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
More from the transcript.

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.
 

SamanthaJ

Senior Member
Messages
219
I remember watching that Panorama as a teen, these transcripts are even more chilling than I remember. It certainly says something about our society that it did not result in a public inquiry and that no one in the mainstream media other than Matthew Hill has been willing to look into it since. Thank you to @Countrygirl for posting them.
 
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