Iatrogenic harm in FND: doi.org/10.109... - Functional Neurol...
Iatrogenic harm in FND
Interesting but - from the point of view of someone with a rare condition - they are not covering the iatrogenic harm that is caused when people are told that if they don't accept a 'conversion disorder'/FND diagnosis their primary care will be withdrawn. This type of approach has delayed the diagnostic odysseys of scores of people with rare conditions, which, in turn, delays treatment and/or access to clinical trials. In some cases people have not been able to move to different medical practices (mostly those in rural areas) so have had to accept the FND label even though they know it isn't accurate.
They also do not seem to show an awareness that the FND Society do not have a great track record when it comes to grown up patient engagement.
I like the points they make about over diagnosis and diagnostic overshadowing since these have both now become an issue for people labelled with PPPD (which is thought to be a subset of FND by some providers but not by others and which is being massively over diagnosed).
In the future I'd like to see more of a focus on the harm done to the reputation of decent neurologists by the 'bad apples' eg the one who diagnosed a woman with FND during a 3 minute consultation in a corridor (this was in the UK) and then told her to 'google it' when she asked for further information about this condition. Or the ones who tell patients that if they question the FND diagnosis it proves that the diagnosis is accurate. As it happens I tried to ask if there was any evidence that questioning the FND dx proves that it's the correct diagnosis via Stone's feedback form and my question didn't get published there. Hmmm.
Edited to add that (in some clinics) PPPD is considered to be 'psychosomatic' so their comments about this terminology was also, erm, interesting. I would also like to see them do a deep dive into the barriers to recording a misdiagnosis of FND and a thorough examination of the actual prevalence of FND since there is huge variability from paper to paper which makes it hard to trust that they're getting the 'head count' right.
Just finished ready this lengthy article shared in another group. So many takeaways. Here are a few of my notes:
4 years was the median to dx - disgraceful and delaying much needed rehabilitation
For functional seizures, the mean time from symptom onset to diagnosis in published studies ranges from 3 years to nearly 9 years. Some factors associated with delay in diagnosis include being female; being prescribed anti-seizure medication; and history of physical abuse; and in children, a history of psychological abuse. These delays have been described as sources of distress and dissatisfaction and, as health professionals describe, are ‘costly and time consuming’.
Patients with FND should be prioritized for early access to treatment (just like any other medical condition), which would go some way to reducing harm from chronicity and deconditioning, the distress of uncertainty and unnecessary investigations and treatments.
On the topic of treatment, research funding for FND treatments could be improved—at the time of writing, there were less than 20 trials actively recruiting for FND compared with hundreds for epilepsy, MS and Parkinson’s disease.
However, many positive things are happening with regard to research and service development, and FND is now occupying a more mainstream position in many areas.
Conclusion
Undoubtedly, there have been advances in many areas with regard to FND, and patient involvement has been integral to driving progress. That said, it continues to be the professional’s job to reduce iatrogenic harm, and more can be done to mitigate and address this issue.
It is important that we continue to learn from the history of this common and treatable condition and use this knowledge in an adaptive way for the benefit of patients with FND and their carers.
The fact that the authors have chosen to hang out their dirty washing in public is hopefully a first step to getting it washed, dried and wearable. The next step might be how are they going to put their own house in order ..esp with the current financial constraints and limitations on the time available to spend with patients, when the mantra is to get the waiting lists down, which is proliferating the telephone consultation, the referral to online resources, and 'other' health care professionals being leaned on beyond their limits, to deal with this complex condition.
Long live patient power.
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