FND STIGMA SURVEY

[FND_]

FND STIGMA SURVEY gathers the lived experience of those Dx with FND (& related disorders) & their encounter with stigma. Results will be shared throughout 8th annual WORLD FND MONTH IN APRIL

surveymonkey.com/r/fndstigma

[210272]

Can people who have been misdiagnosed with FND complete the survey? There are quite a few of us here.

[FND_ Administrator Volunteer FND Hope in reply to 210272]

Unfortunately, this particular survey is only for those with a current diagnosis. We are looking at targeting other groups (i.e. misdiagnosed, medical professionals) from other perspectives down the road.

[210272 in reply to FND_]

OK, thanks for letting me know.

One way of preventing misdiagnosis would be a strategy from Hon Prof Stone, since he is aware of the over and misdiagnosis of FND but if he has a prevention strategy it hasn't been communicated to us yet, to the best of my knowledge. Same goes for the over and misdiagnosis of triple PD since he is also aware of that.

I'm unclear how you will do the out-reach to misdiagnosed people since although there are a quite a few of us here, many will have migrated to the groups that support the conditions they have. Outreach to the Lupus groups might help but there are many more.

When you do the misdiagnosis survey, please make it very sensitive since many of us develop ongoing stress response - sometimes referred to as medically induced PTSD - due to the way we were misdiagnosed. Many people with rare conditions pick up 'functional' labels, sometimes even after they have a biomedical diagnosis, and it is well known that people who are living rare have poor mental health, as do their care-givers if they have them. The RDUK (rare diseases UK) survey about this was very well structured to ensure people didn't get triggered while taking it so it might be worth asking them how to manage this.

Will the outreach to health care professionals be along the lines of that "The function of 'functional'" survey? Or are you going to ask some more robust questions like, for example, 'Do you diagnose FND on the basis of confirmation bias alone, as many of your colleagues do?' Or 'Do you think it is wise that Hon Prof Stone instructs diagnosing doctors to disregard the information in the physical notes when making this diagnosis?' Or 'Is it ever ethical or responsible to ask people to self-diagnose with a core psychiatric disorder, as happens all too frequently?'

[eviedotty in reply to FND_]

I am confused as to what category I would fit into...I have the diagnosis of FND but no symptoms...I asked the diagnosing doctor...my own neurologist as he referred me for a non FND matter and I asked for it to be investigated on the basis of how can anyone have a diagnosis of anything come to that if you dont have symptoms?...is it possible to have FND and not know you have symptoms?...is old age a symptom in respect of the aches and pains that come with age?...these are serious questions and I would like them answered I have been pursuing and answer for a few months now and am presently onto stage 3 of an investigation... just to get a list of symptoms that I have...

[Jillymo in reply to eviedotty]

I have diagnosed and confirmed conditions but had been refered to a neurologist for a B12 deficiency. Like you I came out of the consulting room lanelled with FND. I were furious and like yourself have opened a case. against him.

[210272]

Ah, I don't have the kit necessary to scan for the survey. Are you discriminating against poor people or people who can't use technology like that or both?

[artmom in reply to 210272]

Is the question, I wonder (as I cannot click on anything to get to a survey either), how much stigma one receives from the medical establishment? Has anyone managed to see this survey?

[210272 in reply to artmom]

I don't know but hope it includes that question since so many people here seem to have had negative experiences in healthcare. Dr Wade (UK doctor, retired I think) told me that people with FND faced the 'certainty' of prejudice in primary care which was one of the reasons I decided to get re-diagnosed with the condition I do have so that I could get rid of the 'functional' label since I didn't like the idea of any kind of prejudice from doctors. It can't do them much good and certainly wouldn't have modelled a good healthcare experience for me.

I think a few years ago there was an FND survey that asked if patients with this diagnosis sometimes didn't go to see their doctors for other conditions, even when they were really ill, because of having this diagnosis in their notes.

Not sure what the results were though but it would be useful to know and to compare it with the results from this one.

In the UK attitudes have changed a lot, thank heavens, although it is still hard for people with mental health problems (eg from the stigma associated with migraine or from traumatic experiences in healthcare or for any other reason) to access high quality services. So our poor overworked GPs are often left to pick up the pieces. Mine is great - she knows she can't do anything for me for the condition I have but she keeps a close eye on any other symptoms and makes sure I get regular check ups and blood tests etc. And if I'm down, she just witnesses it for me because that's all I need. Most of the time I'm more worried about her than she is about me since one of her sons has a very tough time with autism and cut backs mean he's not getting all the services he needs either. And having said all that, I know people who were diagnosed with fibromyalgia back in the days when it was thought to be a psychiatric condition who are still fearful of the medical profession and avoid contacting them unless they are in dire need.

[eviedotty in reply to artmom]

I have completed a survey on here but the fact that my symptoms are taken care of under another condition which is evidenced through MRI scans and have been successfully managed for 20 years made me feel like the survey doesnt apply to what am living with as in 3 cavernomas in the brain each bring their own challenges that are very well managed but I still get flare ups that are again very well managed with a long term established care plan and so am genuinely confused and every Neurology appointment now starts with how confused I am that...blah blah and can you help me by giving me a list of the symptoms that you have identified as belonging to FND and the answer is always the same ....no I cant answer that as your health issues are too complex...the outcome has been that the diagnosis needs to be down graded then another outcome has been that this needs to be revisited and I feel really bad as there are people out there that are seriously suffering and I am not and there for the time /effort/money should be going to someone who has a list of symptoms that would benefit from therapy. I asked my own doctor so now I have the diagnosis so what is the care plan/symptoms that require attention and the outcome of the discussion was that there is nothing to be done as there is nothing there...sorry about how this sounds but its horrendous to live with because my life is risk assessed to death with what I already live with and this has just made my life now non existent for when we come out of lockdown as with all conscious I cant go to a swimming /exercise class and lie about not having the condition but then I dont have symptoms so am just lost full stop...

[artmom]

I’ve just completed survey. Just copied the survey monkey line above into browser. It’s a series of questions with tick box answers regarding treatment by medics family public. There is space for comments also. Very quick.

[210272]

I'm still not sure if misdiagnosed people, or people who have had the FND overruled, are included in this survey. Please can you let me know since there are quite a few of us here. Also is it applicable to people with other core psychiatric disorders eg bi-polar and schizophrenia?

[Daesin]

Okay, I am a techno idiot. I can't find the link in the above paragraph. if the administrator or whoever put this up will simply provide a working URL they might have a better chance of getting people to answer the questions. Please?

[FND_ Administrator Volunteer FND Hope]

Sorry the image was supposed to link to the suvery and the qr code is probably diffiicult if you are on your phone. The link should work now.

[Shelford24]

Please can the issue of misdiagnosis be addressed and taken seriously by those with an interest in FND rather than ignoring that the process in diagnosing this has serious flaws that no ones to want to address.

[Di01]

I'm so finding it hard to get my head around me having fnd plus suffering menopause as well been a rough rd from sleeping most of the day to shaking knees unbalancing problems lack of concentration ,pains in shoulder & cant do a daily activity & then nerves that make me smoke no end really cant find much info on this subject & i'm frustrated now!

[210272]

Please can you let us know if the results from this survey available in the public realm? Or how we can find them? TIA

[Mom1314]

Hello, I would like to complete survey, but it states that ‘this survey is currently closed.’ May I please get more information regarding the survey and April as FND awareness month? Thank you so much