It would be interesting to know if any in the FND community have ever experienced 'a triage' before they were given their rehab treatment ....that is if any rehab was on offer in the first place.
If you were openly triaged, or it was done 'behind closed doors' or you were just not given treatment the article below may explain why. I haven't quite worked out what country the triage procedure explained in the article refers to. It doesn't sound like the UK.
This is for Canada. Actually, specifically Ontario because healthcare here is done by province. Even though the clinic mentioned (in Toronto) is the only serious FND clinic in the country, I would not be able to go there because I'm in a different province. I have met someone from Ontario who was turned down for treatment there, but she didn't know why. Probably limited resources because Canada has universal healthcare, similar to the NHS. They have to choose people they think will benefit most.
Thanks for the information .. it has put the triage procedure in context. In the UK we don't have serious FND clinics in every region, and only at a push can you go out of region .. the waiting lists are long. Sad state of affairs for all of us.
In the UK we technically don't have a clinical pathway at all - which is why the "FND" clinics don't get a referral for every FND patient as they should.
My "Triage" would be classed as discrete.
I got sent to Psychology without explanation from my Neurologist - but apparently they're known for doing this for FND patients in my area because the Psychologists have to constantly explain it's not a psychological condition, just that it *may* have psychological factors.
I'm now being "treated" by my GP - but only after 20 years of mistreatment and a year of persuasion after diagnosis.
Hi LilyMarshell,
I thought there was a Pathway for p/w FND in the UK but maybe it doesn't apply to people with FMD yet, possibly because there are no known biomarkers for FMD (or there weren't last time I checked).
I hope your GP recognises that delayed diagnosis (I'm guessing yours was delayed, please correct me if I'm wrong) nearly always leads to iatrogenic harm so s/he will redouble their efforts to empower you to better health.
Sadly the "pathway" for any form of FND isn't:A. Enforced
B. Wide Spread
There's no requirement to follow the "pathway" and most physicians sadly aren't aware there are "recommendations".
Because of this, there isn't an actual clinical pathway in the UK like there is for most other conditions. So treatment is surprisingly rare from what I've heard from support groups.
My GP doesn't recognise the late diagnosis, despite having symptoms of FND (FSD and FMD) for over 20 years, because then she'd have to take some accountability - so that's not going to happen.
She is trying to help, mildly, though - which is better than the neurologist who keeps recommending medication, then refusing to prescribe because he doesn't agree with UK guidelines (only specialists are allowed to prescribe it in my area, so he needs to be the one to do it, but he wants my GP to do it - he recommended it 14 months ago... 🤦🏻♀️ Stopping me from getting the meds because he doesn't agree with the guidelines that stops other people from getting the meds)
I thought a clinical pathway for FND had been established by NNAG in Feb 2023, though I can well believe some of the paths are blind alleys in some regions... otherwise we would all be being referred to a specialist centre and we don't hear from many who have had that experience on this forum.
If they have officially made a pathway, they're not enforcing it.I got diagnosed in March 2023, got sent to psych and immediately discharged.
All they could offer me was "self care seminars" which was incredibly condescending.
There was no PT, no Occupational health, no pain management... Just nothing.
The pathway has definitely not reached Yorkshire, that's for sure.
Hi Lily, my experience is about as bad as yours ..referral from GP to neuropsychiatric occupational therapist for 'talking therapy' at Mental Health Trust. Therapist refused to discuss the outcomes with me (there were none apart from my frustration)... then discharge. So Yorkshire is not the only place the path has not reached. ,, but in theory it exists... ....nnag.org.uk/optimal-clinica...
That's horrific, but exactly the same... I'm so sorry.
The pathway may exist but they don't care... Clearly...
Thanks for the clarifications, LilyMarshell and I know it's no consolation but many rare conditions don't have treatments and even when they do, getting a Pathway established isn't easy even though they save money for health systems in the long run. As far as I'm aware there are no recommended meds for FN(C)D (possibly because of a lack of decent biomarkers and genetic assays) and although some people seem to do OK with antidepressants, they don't suit others. Plus taking and withdrawing from these meds can lead to rare complications such as developing Akathesia (sp??) which is often misdiagnosed as FN(C)D, as are many rare and less common conditions.
Whilst it's true we need to accept that FND is a condition with which medical science has yet to fully come to grips, I sometimes think a little more 'being upfront' about the state of play would be welcome in the way some health professionals deal with FND patients. I am glad my own GP has no qualms in saying 'WE need some help here'
Our neuropsych (when we eventually got that appt) admitted their was no commission for FND alone.
botox treatment
FND diagnosis and if you've been given help.
Did you have treatment to retrain tour brain?
