Discussion in 'General disability topics and advocacy' started by Michiel Tack, Mar 16, 2020.
PURPOSE OF THE SURVEY
The European Federation of Neurological Associations (EFNA) represents 20 European and International associations across a wide variety of neurological disease areas, such as multiple sclerosis, epilepsy, migraine and ADHD.
The purpose of this survey is to identify factors contributing to stigma against people living with neurological disorders in order to develop strategies that will help to combat it.
Stigma and discrimination occur when people are treated unfairly because they are seen as being different from others. This survey will explore how you have been affected by stigma due to living with a neurological disorder.
PARTICIPATION IN THE SURVEY
This survey is open to anyone who is living with a neurological disorder and resides in Europe.
Interestingly, they list both Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME/CFS).
For the responses from those with ME only see this PDF file, https://www.efna.net/wp-content/uploads/2020/07/Data_ME.pdf
This is awful. It isn't just failing, it's massive widespread failure. Is anyone in the field of neurology bothered by this massively failing grade? It isn't just us, though we fare even worse, but 75% dissatisfaction is the kind of evaluation that should send any serious group of people running to fix things and push for massive reforms of the entire system.
Instead we see the continuous encroachment of psychosomatic nonsense, which very likely explains most of that dissatisfaction with outcomes. I would bet there is a linear relationship between FND nonsense and outcomes.
Because the question is really over whether medicine is concerned with disease or with people's health. The obsessive focus on disease with complete disregard for what actually happens to the patients is a predictable recipe for disaster.
I would be ashamed of being part of such a massive failure. But medicine generally scoffs at those concerns, they are not in the "customer service" business, i.e. not in the business of serving sick people. Even though it's common to cite "satisfaction" in papers when all other outcomes fail. What a totally FUBAR mess.
Bad incentives lead to bad outcomes. Please fix this, this is embarrassing and wrong.
Q44 In which area of your life has stigma been most problematic? (Please rank from 1 to 7 with the most problematic area first)
70% rated interaction with medical professionals as either 1 or 2.
Absolutely shameful. Complete shambolic failure. How can anyone in this field be proud of themselves given this? And all because of a silly astrology-level ideology. This is burn-it-all-to-the-ground-and-start-over level of failure.
Thought this was interesting because a lot of the participants were ME patients.
I highlighted some notable results in this Twitter thread:
1) The European Federation of Neurological Associations (EFNA @EUneurology) conducted a survey on stigma and neurological disorders. 29% of the respondents (404 people in total) had ME, making it the largest illness group in the survey.
2) Some notable results:
More than half (54%) of ME patients said that their relationships within the workplace was negatively affected after disclosing their health issue
3) Some of the negative responses ME patients received from their manager include: “He laughed at the diagnosis”, “Told me to get a grip, did not believe in ME”, “and “She thought it was psychological and I needed a kick in the ass. She actually thought, she was being helpful.”
4) When asked what companies could do to improve working conditions for people with ME, the most common answers were working for home (home office), working less hours (part-time), a quieter working place and a flexible timetable that allow for more breaks.
5) 58% of ME respondents said that they agree or strongly agree with the statement: “My family can sometimes make me feel like I am exaggerating about my condition.”
6) To the question “If you have children, has anyone ever made you feel that you are not an adequate parent because of your health issue?” Half the ME respondents (52%) said yes.
7) 54% said they have ever been denied insurance or a mortgage on account of their neurological condition.
8) More than half (54%) said they have once delayed or avoided seeking medical advice because they felt embarrassed about their condition.
9) To the question: “How well do you feel medical professionals understand what it is like to live with your condition? 68% of ME respondents said “Not at all”.
10) 95% had ever felt that a medical professional did not believe the extent or severity of their symptoms and 95% said they had ever felt that they did not receive adequate or appropriate treatment because a medical professional did not take them seriously.
11) In contrast to some other neurological disorders ME patients indicated that stigma has been most problematic not in their interaction with friends, family, employment or partners, but in their interaction with medical professionals.
12) When asked about what they believed to be the root cause of stigma toward their illness, ME patients didn’t point so much to the name or symptoms of ME but to lack of understanding and myths about the condition.
13) Big thanks to EFNA for conducting the survey and all patients who participated.
The full EFNA survey results can be viewed here: https://www.efna.net/wp-content/uploads/2020/07/SurveyReport2020.pdf
The results for ME patients can be viewed here: https://www.efna.net/wp-content/uploads/2020/07/Data_ME.pdf
Comparisons with other illness groups is available in this document: https://www.efna.net/wp-content/uploads/2020/07/Data_Comparison.pdf
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