Binkie4
Senior Member (Voting Rights)
Sunday Times online today ( bolding and print size from the article- front page online- article in Health).
An extended description of the circumstances around Maeve's death, including discussion of FII.
"As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27"
"Sarah Boothby had no idea that at the same time as she begged for help for her daughter, the people she was turning to were holding secret safeguarding meetings, discussing the possibility that Maeve’s condition was in fact caused or fabricated by her — and proposing Maeve’s forcible removal from her care."
"Boothby and Maeve’s father, the Times journalist Sean O’Neill, knew from bitter experience that there was scant medical support available for ME. But they could not understand why it was so hard to get their daughter the help she needed for a more bearable death.
It was only when council documents were disclosed before Maeve’s inquest last year that they finally got answers. "
"Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby. That year there were seven safeguarding meetings that neither Maeve, nor her parents, were invited to."( my bolding)
"Boothby spaced out visits to her daughter by other people, including social workers and relatives, to prevent her from getting exhausted, and refused an unplanned visit from social workers in lockdown after they “doorstepped me just as I was taking food in for her”. The action triggered an investigation for “coercive control”."
"Boothby, 64, contacted The Sunday Times after an investigation last month found that hundreds of parents, mostly mothers, are being falsely accused of fabricating or inducing their child’s illness, and facing allegations of abuse when they seek medical care for them."
Boothby recognised her own experience in the article. The ME Association says parents of children with ME or long Covid are “a sitting duck” for allegations of “fabricated or induced illness” (FII, of which FDIA is the most extreme example) because the condition is so poorly understood and it is challenging to get a diagnosis."
"Boothby said the lack of medical knowledge about ME combines with risk-averse social work to terrible effect. “It’s like the whole thing is built to kill people.”
Now she wishes she had never gone to them because she believes the extra stress of interventions prompted by safeguarding concerns worsened Maeve’s condition.
Adrian Harris, chief medical officer at the Royal Devon University Healthcare NHS Foundation Trust, said: “Maeve’s case was an extremely complex and tragic one, and our deepest sympathies are with her family for their loss. Everybody involved in caring for Maeve has been profoundly impacted.
“We remain committed to learning from Maeve’s case, and we are working to support the national plan published last month.”
This is just the beginning of a very long article which moves into the issue of FII in some details. It describes, with photos, more of Maeve's life, and Sarah's since Maeve's death.
It also gives more information from Maeve's GP who, it will be remembered, had supported Maeve, but was too ill herself to attend the inquest, and quotes Dr Speight.
Speight said: “Parents of children with ME try desperately to get someone to see them to diagnose them, they go from doctor to doctor … They’re trying to do the best for their children, they’re not neglecting them, and they’re not emotionally abusing them. But because of the extended definition of FII, they end up on the child protection register. Simply disagreeing with doctors is taken as neglect. And usually the parents are right and the doctors are wrong.”
The discussion includes a statement from NHS England.
"A spokesman for NHS England said: “The NHS is determined to improve the experiences of people with ME/chronic fatigue syndrome. NHS England is working closely with the government to implement the national plan published last month to improve knowledge and transform care for patients — and has already rolled out new training to increase understanding of the condition among clinical staff."