Feedback following rare conditions meetings in the UK that I think are relevant to everyone here, whether or not you are 'living rare'.

[210272]

Hi All,

I've recently been attending some wonderful events in London and elsewhere, focussing on rare conditions but covering general medicine too since many of us with rare conditions have more common ones as well, especially as we age and as new conditions are discovered, which is happening a lot since medical knowledge is set to double every 73 days this year. One of the key take home messages from patients *and* doctors concerns our primary health care providers/consultants and the need to find ones we can trust and who are willing to say 'I don't know but I want to learn so I can help you'. The doctors said they are aware that many people pick up labels like 'functional' during their diagnostic odysseys and that these labels can have a negative impact on future care since unfortunately some doctors still can't see past psychiatric labels and tend to lump all symptoms under them. They are also aware that there is little standardisation in the way FND diagnoses are made and that far too often these diagnoses are made inaccurately and/or on the basis of confirmation bias. The knock on effect is that other conditions get missed and it becomes harder for people who do have FND/FMD to access services. Their advice is to ensure that if you have a FND diagnosis that it was made accurately and in accordance with a standardised process and to consider it as potentially inaccurate if it wasn't.

Retrospectively this can be difficult since the understanding of FND has changed a lot in the last year or so, especially since the psychiatrists and neurologists involved think it might now be a 'hardware' issue as well as a 'software' one so if your diagnosis was made using only the 'software' analogy, you might need to get re-diagnosed if there is a standardised process in place in your country. There isn't one in the UK, currently, so their general advice was for people in the UK is to ask your primary health care provider to disregard this diagnosis until there is and you can get re-diagnosed. They also said that under no circumstances should anyone be asked to self-diagnose with this core psychiatric condition by being told to look at websites about it.

[artmom]

210272, thank you. You are one of those here who provides exceptionally useful information - I feel you could be on the payroll!! I don’t know where you get all your info but I am one of the grateful recipients. Keep up the good work and thank you 🙏

[210272 in reply to artmom]

Artmom - my gem of a neurologist thinks I should be on the payroll, bless her. I get some of my info via those fun papers that are, apparently, intended for professionals only, like that's still a thing. *Sigh*

I like the Creative Commons stuff more cos I'm skint and papers behind paywalls are not my friends.

Thank you for your kind words and encouragement. You gave me another boost to my motivation as a public health activist.

[tryingtobehopeful]

Thank you 210272 for this great info. My doc asked if I had been diagnosed with fibromyalgia or dissociative disorder or a few other things. As soon as I said yes to one, out came the FND diagnosis. Frustrating.

[210272 in reply to tryingtobehopeful]

I dissociate from drs like that : ) FND got coded party so drs could get paid for diagnosing it.