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If you only RT one tweet today, please, let it be this one.
#RIPRobinWilliams #RobinWilliams
Stephen retweeted
You may have also heard @dr_caoimhe_mc presenting the huge joint effort exploring FND as a feminist issue at the recent @fndsociety meeting in Verona. jnnp.bmj.com/content/94/10/8… 29/
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This is one paper in a PhD from @dr_caoimhe_mc on stigma and FND. Another paper exploring how stigma unfolds over time in FND has also been published recently. doi.org/10.1016/j.jpsychores…. 28/
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Conclusion. Stigma drives lack of care for patients. Institutional changes, training, research and patients and health professionals working together are likely to help make FND legitimate & visible. 27/
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The growing number of patient-led FND charities worldwide, health professional organisations such as @FNDsociety, increasing research, changes in curriculae and FND service pathways are all positive steps. 26/
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There is evidence that stigma can be challenged and overcome. Studies show that having a shared understanding of FND, giving time, a clear care plan, & empowering the patient with a tailored, legitimate explanation that they could share with others were some key points. 26/
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“Society knows nothing about this, which is the huge problem, and automatically people are assumed to be malingering” - Healthcare professional, South Africa, (Fouch´e et al., 2019). 24/
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9. Care access and inconsistencies: Globally, stigma itself is a major barrier to service access & development. Poor care is a bigger problem in low-middle income countries, but worldwide there is a deficit in clinicians who have the perceived expertise to treat FND. 23/
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“Well, I don’t feel competent or skilled. I just look and I think, “Oh, god, how am I going to get through this one?” - Occupational Therapist, UK (Nicholson et al., 2021). 22/
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8. Knowledge, training and skillset.
Lack of competence, skills and teaching among healthcare professionals and knowledge in the public is invalidating for patients, and leads to patients feeling “othered” by having to explain their condition. 21/
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“The problem we have as physios is often that consultants aren’t honest with patients about their true diagnosis which makes our treatment and explanation of symptoms more difficult” Physiotherapist, UK (Evans-Lacko et al., 2011). 20/
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7. Communication.
The point of diagnosis is often confusing. Doctors are often not transparent with patients, leading to downstream difficulties for therapists. Health professional communication is often poor, & coding for FND confusing or non-existent. 19/
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“A lot of the time they get thrown out of the hospital... pretty unceremoniously and... these people still have symptoms and they’re not being looked after, and not being treated properly, and I think it’s quite awful.” - Speech&Language Therapist, UK (Barnett et al., 2022). 18/
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6. Not a priority.
Diagnosing FND often takes much longer than other neurological conditions. Once diagnosed, patients are often discharged quickly with no care pan/follow up. 17/
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"She then bent a pillow around my face.. to try and get a response she put me in a wheelchair with force and started shouting at me... I was very woozy and didn’t understand what was happening…" patient, with functional seizures (Robson & Lian, 2017). 16/
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5. Unprofessionalism.
Attitudes of dismissal were reported by people with FND and health care professionals themselves, with negative attitudes cascading within teams. There were examples of prejudice toward patients, and reports of assault causing harm. 15/
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“It’s just so annoying that the world is so taboo about mental health full stop. So, when you hear about the Psychiatry side…it’s like oh God" - Patient with functional seizures, UK (Read et al., 2020) 14/




