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BBC Article: Carers of children with ME 'accused of fabrication'

Hip

Senior Member
Messages
17,824
Carers of children with ME 'accused of fabrication' - BBC News
A "significant number" of those caring for children with ME have been accused of fabricating their child's illness, a survey has found.

The charity Action for ME said a safeguarding referral to a child protection team had been made against one in five respondents.

Its chief executive said children and their carers faced the "double whammy" of an ME diagnosis and not being believed about their condition.

NHS England has been asked to comment.

Out of 270 respondents to the survey, one in five said they had had a safeguarding referral to a child protection team made against them.

Half of the referrals involved allegations that parents had fabricated or induced their child's illness, although 70% of all the cases referred to social services were dropped within a year.

Sonya Chowdhury, CEO of Action for ME, which is based in Keynsham, near Bristol, said: "Ninety-six per cent of the parents felt that their children's care had been affected by a lack of understanding of ME and nearly 100% of parents were concerned their child had not been believed.


I'd like to hear the response from NHS England, and what they say about the fact that NHS medical professionals are accusing parents of children with ME/CFS that they are fabricating their child's devastating ME/CFS illness.
 
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aaron_c

Senior Member
Messages
691
I'm appalled that 30% of the cases were NOT dropped within a year. And I wonder how many of the 70% of cases were dropped because the child had a temporary recovery...which is great, but might leave the family open to further abuse if the child relapses. Or how many were dropped because they successfully bullied the family into making their child do GET?
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Just in case anyone hasn't followed the link, this brief report is a trailer for a radio programme tomorrow evening (UK time):

An investigation of the survey and treatments for ME is on Radio 4's File on 4 on Tuesday at 20:00 BST.

@Hip - I would hope there would be an attempt in the full radio programme to get a reaction from the NHS, among others.
 

SamanthaJ

Senior Member
Messages
219
Just in case anyone hasn't followed the link, this brief report is a trailer for a radio programme tomorrow evening (UK time):

An investigation of the survey and treatments for ME is on Radio 4's File on 4 on Tuesday at 20:00 BST.

@Hip - I would hope there would be an attempt in the full radio programme to get a reaction from the NHS, among others.
I don't think the ME episode is on this week, it aired last week but is available online: http://www.bbc.co.uk/programmes/b006th08
 

Hip

Senior Member
Messages
17,824
A direct link to the BBC radio program (37 minutes long) is found here.

An article on the Action for ME website about their survey and the BBC radio program is here.

The radio program talks about fabricated or induced illness (FII), which was previously known as Munchausen syndrome by proxy.
Fabricated or induced illness (FII) is a rare form of child abuse. It occurs when a parent or carer, usually the child's biological mother, exaggerates or deliberately causes symptoms of illness in the child.

The program talks about how parents of children with ME/CFS are being accused of causing fabricated or induced illness in their child, in spite of the fact that FII is a very rare condition (Sonya Chowdhury points out that the Department of Health say there are only about 50 actual cases of FII a year).

In the radio program, Sonya Chowdhury says that in 70% of these accusations of FII, the subsequent "safeguarding referral" investigations that the health authorities make into the parents are being dropped within a year, suggesting that the original accusation was wrong.
 

Richard7

Senior Member
Messages
772
Location
Australia
I wished they had asked why the nurses and sociologists think that a condition as rare as FII is a more likely reason for a child being away from school than ME.

I do not know enough to know is those 50 cases per year in the UK are certainly FII or if this number is inflated by people are who unable to convince doctors that it is something else. But even if you take it on face value it should be incredible that all of these nurses and social workers know so much about and are so concerened about a one in a million illness when they do not know enough about an illness as common as ME.

I say it should be incredible, but of course everyone here has had the misfortune of being forced to know better.
 

Chrisb

Senior Member
Messages
1,051
This would seem to explain the apparent anomaly in the obvious omission in the last programme. It's surprising that there was no trailer for this new programme to overcome the muted criticism, and to ensure that the interested audience would be aware of it.

Views about the BBC may have to be changed. It is appearing less monolithic.
 
Messages
88
There is only the one File on 4 programme, which aired last week & is available on the link in post 4. Tonight's File on 4 is about mental health.