The current issue of Action for ME’s newsletter has a seriously scary article on the experiences of families with children suffering from ME who have faced false accusations of abuse, neglect and ‘fabricated, induced illness’ or FII (what used to be known as Munchausen’s by Proxy).
In conjunction with Radio 4’s File on 4 programme last June, they surveyed 270 families with children with ME and found that:
- 90% of those who responded were concerned that the professionals involved with their child did not believe what they were told about the child’s illness.
- 20% had had a child protection referral made against them and half of those resulted from claims of FII. (FII occurs when a parent or carer deliberately exaggerates or causes the symptoms of illness in a child.) This is a very significantly higher number than in relation to any other form of illness.
- 53% of the families who had these proceedings instigated against them said that they had been instigated by a teacher – 70% of those referrals were on the basis of FII. (A typical instance was where the school head had referred the family ‘for failing to ensure that the child attended school regularly’.)
- In a third of cases, the referral had not been by a teacher but by a health professional, with FII being a factor in more than half of these cases.
- Even though they have a diagnosis of ME, often by several specialists, families are frequently challenged on school attendance and on the validity of their child’s diagnosis.
To quote just one mother who appeared on the programme:
‘We are being discriminated against because my daughter (who has been ill with ME for four years and who has had her diagnosis confirmed by no less than three separate specialists) has an illness they don’t understand.’
So bad was the situation that the family moved so as to try and leave behind the suspicions about the child’s diagnosis – but already child protection investigations have started again in their new home.
For more see the Radio 4 programme or contact Action for ME.
I’m surprised people are able to get diagnosed by several specialists. It’s hard enough finding just one who’s willing to listen!
As a parent of a child with CFS/ME, I have found that specialists in CFS/ME have been brilliant because they genuinely understand the condition. Lack of understanding persists in schools and amongst non-specialist medical professionals – as highlighted by Action for ME.