Medical Misdiagnoses of Abuse: Using the Media to Challenge Injustices and a Call for Greater Due Process Protection in Child Welfare Policy and Practice
In 2019, Taliah Drayak of Orkney, Scotland, sat down with BBC Scotland to share her experience being falsely accused by hospital staff of making her child ill.
Drayak, today the director of IPAN, brought her daughter Beatrix in for a consultation with her pediatrician at the Royal Aberdeen Children’s Hospital after observing her 2-year-old continue to vomit and struggle to keep down food. Clinical staff accused her of Fabricated of Induced Illness (FII) previously known as Munchausen syndrome by proxy, a form of child abuse where a caretaker or parent deliberately causes ailments to feign a child’s illness. For the duration of the child protection investigation, Beatrix was not allowed home and instead was placed in foster care.
Read Drayak’s BBC interview here.
Drayak says she believes her own chaotic childhood was considered further evidence of guilt, even though child protective investigators acknowledged that in all other ways she appeared to be a model mother. As Drayak fought to bring her daughter home and protect her whole family, she promised herself that if she succeeded, she would devote herself to protecting other parents from being falsely accused.
For the last several years, Drayak and others have been telling their stories to the media and using the public outrage that those media stories generated to bring pressure on local child welfare authorities and the Royal College of Paediatrics to change their policies on medical findings of child abuse. Their efforts have focused not on FII /Munchausen’s by proxy but what proved to be more common, charges of neglect due to bruising in babies. In the United Kingdom at the time, many local child welfare policies stated that any bruising in babies should be assumed to be abuse, despite the fact that research shows that the vast majority of babies sustain bruises by accident.
In this package you can read:
- An interview with Drayak, in which she explains how she and fellow parent activists used the media to challenge injustices in child welfare policies and provides a model for how others can use the media to address system injustices.
- Articles in prominent UK publications featuring Drayak and other parents’ experiences.
- Drayak’s reflections on preparing other parents to speak to the media.
- Information about how the stories about them and their ongoing activism have helped to change policy.
- Academic research that provided context for the stories parents told and further evidence of the need for change, part of an alliance between parents and Professor Andy Bilson.
- Links to parent-led organizations that support parents who are falsely accused of child abuse by the medical establishment.
- Articles about medical misdiagnosis in the United States.
- Information about filing a Freedom of Information request or Subject Access request for parents who wish to obtain government documents to support their public telling of their stories.
Interview with parent advocate Taliah Drayak
DRAYAK: The first time I spoke about my case publicly was at the first Parent Advocacy and Rights (PAR) Conference. I stood up to speak and barely made it through my speech because I was crying so much. But it was very comforting to finally be around people who seemed to get it. After I spoke, parents came up to hug me, to say this happened to me too. I had thought it would be seven or so people to show up at this little meeting but in fact, it was well over in a conference center full of people. It was really overwhelming.
During my case, a journalist from the BBC who was already interested in this subject reached out to PAR to see if there was a parent who would be willing to share her story. I was really reluctant to tell my story to the BBC. I was terrified it would somehow come back to haunt me or be used against me, like some big bad monster would come back to bite me. But we wanted to raise awareness. If my case had been a one-off accident, I would have accepted that sometimes random things go wrong. But we felt that this was systematic. Every step of the way through my case, I promised myself that if I survived this, I needed to spend my life trying to help other people and get this issue spoken about.
During our case, we filed a subject access request for our daughter’s medical files and another one for her social work files. In the United Kingdom, a subject access request is a request you can make to have access to your own files. It’s like a freedom of information request, but in the UK, there’s a different term for it when you’re filling for your own information. Without these records, we would not have been able to verify what had happened in court or win our case. Having those files was also incredibly important when we decided to go public with our story.
Even though it is a fairly easy application to make, we knew it would not be easy to actually get the files because social work departments do not like giving records over. The court ended up issuing an order to the social workers demanding that they turn their records over. When they ignored the order, the court appointed a commissioning officer to seize the records in person. The local authority instead turned over a single thumb drive with nothing on it. When a second commissioner went to demand the files, he received only a single envelope with about a dozen papers inside. It took me going to the information commissioner’s office and filing a formal complaint of freedom of information non-compliance for us to find out that there were boxes of records related to our case, and even those were significantly incomplete.
Doing all that work to get our records, however, was incredibly important and parents who are going through a case or have been through a case should consider whether the effort might be worth it for them, especially if they think they might ever want to share their story publicly. After our case was closed, and I told the BBC journalist that I would be willing share my story, she wanted every document related to my case. It wouldn’t have been legal for me to share those documents while I was in court. I’m not 100% sure it was legal for me to share them when I did. But we asked our legal team if we could share them and they said yes. After that, the BBC had their legal team look through all the paperwork, because if I’d made random accusations that were not founded in truth, they’d be liable for libel. So having those documents was the only safe way for both of us.
After I did the interview with the BBC it was absolutely bizarre seeing my story go around Twitter and Facebook and hearing my voice on the news and radio. The BBC was overwhelmed by the number of parents contacting them saying they’d had similar experiences. It really motivated them to continue pursuing similar stories. They also put parents who contacted them in touch with me. I was connected with parents who’d not only had similar experiences but who’d had experiences at the same hospital, with the same department, even with the same consultants. In some ways, it was heartening but in other ways it was terrifying, because it proved that this wasn’t just a single mistake.
After that, a group of five or so of us parents started organizing to make change. The early days of organizing were quite lonely. Parents were terrified to speak up. Before the pandemic we were trying to meet in person, putting up signs in Tescos (a local supermarket chain that has community bulletin boards) and at our libraries, but local counsels contacted us saying that we could not do that as it was a breach of local safeguarding guidance. The message we got repeatedly was that we were not allowed to tell the stories of what had happened to our families and that if we did, we might be putting ourselves in jeopardy. That is a very threatening message for parents who have already had experience with the system to receive.
Over time, though, more and more journalists became interested in our stories. Journalists often came to us at the Parents Families and Allies Network (PFAN) asking about a particular story and requesting if we knew of any parents that would be willing to speak with them. Journalists liked working through us because they did not have the support system to prep parents and provide for their emotional needs while we did.
We could not have done any of this without the incredible support from allies. One particular academic became a frontline knight in creating opportunities and support parents to be listened to. One person’s experience can be seen as a mistake but the research and data that academics can provide show that our experiences are not a one-off mistake.
Andy Bilson is an emeritus professor of social work at the University of Central Lancashire who played a major role in our organizing. I first connected with Andy at the first PAR conference. Over the last few years, much of Andy’s research is pointing out regulations and guidance that are simply not right. The Royal College of Paediatrics, for example, in their safeguarding guidance, says that bruising in pre-mobile babies should be investigated as abuse. However, their own research also found that 1 in 4 pre-mobile babies have bruises. But because of their guidance, doctors are practicing as though every bruise has to be reported, and many local child welfare authorities created regulations that encourage investigators to remove babies whenever they find a bruise. In the hospital my daughter was in, there is even a specific open floor six-bed ward for pre-mobile babies with bruises to be kept under observation, but bruising in babies from abuse is not normal enough to need a ward.
The media attention we received from our stories combined with Andy’s research opened doors and allowed us to have conversations with policymakers who might not have been particularly interested in speaking to us before.
We’ve talked with a variety of different local Safeguarding authorities, with the Royal Academy of Paediatrics. We’ve spoken with the General Medical Counsel, with Nurses in Schools. We’ve spoken at different universities and schools of social work and with the National Children’s Bureau.
One major achievement was when the Royal College of Paediatrics revoked their safeguarding guidance on bruising in babies. They didn’t come out and make a big announcement, but they quietly noted on their website that their guidance was under review. At the same time, several local authorities changed their policies to no longer require an investigation in every case of bruising in pre-mobile babies.
I also think that our work helped to change attitudes to system-affected parents more generally. Most parents have had children who have had a bruise at some point or another, and they know it doesn’t necessarily mean that they’ve beaten their child. So parents can empathize, ‘Oh my God, what if my baby was removed for just one bruise.’ And that helps them be more concerned about injustices in the system, even if they wouldn’t initially have been sympathetic to a story in the media about a parent who lost a child because of substance use. The fact that we were able to show the injustice that occurred in one area helps move the whole effort to reform the system forward. If you look at the Scottish Independent Care Review’s promise and the legislative change that it is bringing in, it reflects a real push back against punitive approaches to families. We believe that our efforts to use the media to change public opinion of this system had something to do with that larger shift in attitude.
Read a few of the articles that were the result of Drayak and other parents’ advocacy in the BBC News; The Daily Mail; and The Scottish Daily Mail.
Read how Drayak works to prepare parents to speak to journalists and journalists to speak with parents here. [See attached.]
Read Andy Bilson’s initial study on child protection policies related to bruising in pre-mobile babies and an article in the BBC News that brought attention to his research. Those policies suggested that all bruising was likely due to abuse although the Royal Academy of Pediatrics’ own research showed that this was not the case. Since then, Bilson reports, four of the five local authorities that he initially investigated have changed their policies, and no longer mandate an investigation in all cases of bruises in pre-mobile babies, while this article, in the Sunday Times, suggests that other jurisdictions are also considering changing their policies. Lastly, in England, starting in October 2021, the government’s child safeguarding practice review panel will be looking again at its advice to local authorities on bruising. Bilson will be one of two presenters. Read more about the review panel in this article in The Times.
Read more about Bilson’s work here.
Many parent-led organizations work to protect parents from medical misdiagnoses of child abuse. Fiightback.org in the United Kingdom helps parents address false accusations of Fabricated or Induced Illness. The Family Justice Resource Center in Chicago, in the United States, co-founded by parents impacted by the system and their allies, also provides support to parents falsely accused by doctors. There are many other such organizations. If you are a parent facing false accusation of abuse from medical authorities, finding these parent-led organizations and social media groups can provide you support, advice and may also be able to help you connect to specialized legal representation as well as doctors who can provide you with expert medical opinions on your babies’ condition that you can use to fight your case in court.
In the United States, focus on medical misdiagnoses has centered around the questionable science behind Shaken Baby Syndrome, now called Abusive Head Trauma, as well as the questionable training of and power afforded to child abuse pediatricians. Read the history of the Shaken Baby syndrome controversy in this Washington Post article. Read the plight of one couple falsely accused of killing their baby by shaking in this article from The Daily Beast. Read how coverage by NBC News on the harm done by child abuse paediatricians led to a change in the law in Texas. That state now requires courts to obtain a second opinion by a medical doctor before making a finding of child abuse. Read Diane Redleaf’s book, They Took the Kids Last Night, which chronicles her efforts to defend parents after doctors falsely accused them of abusing their children.
Different countries have different ways for parents to access the information in their child welfare records or any other government information that pertains to them, as well as all other information that should be available to the public. In the United States, the European Union and Australia, both information about your own government files and government information that is available to the whole public can be accessed through Freedom of Information requests. In the United Kingdom, the process is very similar, but filing to receive information about your own files is called a Public Access Request. Below are links for more information about how to file a request for your information in various countries.
Click here for a sample letter and instructions for how to file a Freedom of Information or Public Access request. [TK]