The rare disease that can lead to families losing their children to social services
Two mums who fell under suspicion tell of their ‘worst nightmare’ after being accused of faking kids’ illness
Two loving mums have told how they came under suspicion of child abuse after their kids fell victim to a rare and serious condition.
Both feared their youngster would be taken into care after being accused of Munchausen’s syndrome by proxy – where parents pretend their child is sick in order to explain injuries or symptoms of violence or neglect.
It took many months before the children’s true condition was accepted by social services.
In both cases the children were diagnosed with Ehlers-danlos Syndrome, which can lead to unexplained bruises, joint dislocation and stomach problems.
In the first case, social services sought a care order over concerns for a five-year-old girl.
But a judge rejected the request – and only a month later the girl was diagnosed with EDS.
TERRIFYING
Her mum, who wishes to remain anonymous, said: “It was absolutely terrifying.
“I felt like we had nowhere to turn and no way out.
“Allegations like this stick even when you are proved innocent. It was so distressing and I can’t even find the words to describe what we went through. We felt completely under attack.
“We asked our daughter’s school for help for gastro issues and the next thing we knew social workers were accusing us of fabricating her illness.
“It was absolutely devastating and left us broken. Two years on I still can’t really get over what happened.”
She is now calling for doctors and social workers to have special training to recognise EDS to prevent other loving parents from being wrongly accused.
In the second case, a teaching assistant was also accused of Munchausen’s by proxy.
Social workers claimed the 32-year-old was fabricating her son’s illness – despite a diagnosis from a Harley Street doctor.
Hampshire County Council was forced to apologise to the mum, who also has the hereditary condition EDS.
The single mum, who also asked to remain anonymous, said: “I’ve been through absolute hell and back. It’s a parent’s worst nightmare being accused of doing something to psychologically harm your child when all you want to do is keep them safe.
“I’ve had sleepless nights worrying my son would be taken away from me and, even after an apology, I find myself constantly tidying the house in case there’s ever a knock at the door.
“Knowing your child has a recognised disability then suddenly being accused of ‘faking it’ was like a bomb going off.”
Her three-month ordeal began last December when she asked social workers to help with a different family issue.
In a letter to the mum in February, Hampshire County Council admits “factual inaccuracies” in the social worker’s report, but said no official safeguarding referral had been made.
CHALLENGES
To make things worse, the council accidentally sent her paperwork, including sensitive medical details, to the wrong address.
Charity officials say the ordeal of both parents is explained by a lack of awareness. Kay Julier, of support group EDS UK, said: “The widespread lack of understanding of EDS leads to many challenges for families.
“The most distressing is the accusation against parents of fabricating an illness in their child, often at a time when they are trying to do their best by addressing their child’s very real physical symptoms.”
A leading specialist says some paediatricians ignore the existence of EDS.
Professor Rodney Graeme, a former consultant rheumatologist at Guy’s Hospital, London, said: “I think one of the reasons it is overlooke
looked is because it is a very complex disorder and affects so many different systems in the body there are some in the medical profession who do not believe that possible. "Paediatricians don’t always diagnose it because there is not enough awareness surrounding it
Social workers tread a fine line In assessing abused children and have come under fire for a series of failures where alarm bells did ng soon enough. These include the tragic cases in London of abused children Baby P and Victoria Climbie, who both died. But social work academic Andy Bilson conducted research which suggested guidelines from h ealth watchdog NICE lead to innocent parents being investigated too often.
Andy, Emeritus Professor of social work at the University of Central Lancashire, claims health professionals are not being given enough discretion to decide the cause of bruising.
He found that 91 of the 152 councils in England have specific guidance on how staff should respond to suspected abuse.
His research found that 70 of those do not give frontline staff like health visitors, GPS and nurses the freedom to make their own judgment about how a bruise was caused. Instead, they were advised to refer families to paediatricians within 24 hours.
And in five areas – Kirklees, Wakefield, Bradford, Calderdale and Sunderland – a formal protection investigation must be triggered when there is a single bruise in a pre-mobile child, who cannot walk or crawl.
Mr Bilson said: “I think social workers are in danger of having to take decisions based on misleading guidance.
“I think the guidelines say bruising is very uncommon in small babies, but it isn’t. They can roll into things, fall off sofas, or be hit with a toy by bigger siblings.”
A spokesman for Hampshire County Council said of the second case: “When concerns with regard to the health and wellbeing of a child are raised, we have a duty to respond and investigate those concerns. In such cases social workers are necessarily reliant on evidence from health professionals as well as other agencies.
“Where we are notified, we will take immediate action to correct any inaccuracies – as we have done in this case.
“Similarly, any data breach that is reported is always thoroughly investigated and steps taken to reduce the risk of a recurrence.
“While we are unable to comment on individual cases, we can confirm that we have responded to the issues raised and the necessary action has been taken.”
I have been to hell and back, in fear of my child being taken from me...
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