The UK gov response to the FND petition

[Shimmyaway]

Thanks to all who signed the petition to take it over the decisive 10k mark .. and for those who didn't and who won't have received a response themselves , an outline of the main points is below.. it's hopeful but the changes will take time to reach the point of access ..and US...and will depend on the unmentioned funding implications.

In order to increase understanding of FND among GPs, the Royal College of General Practitioners has produced a learning course, which includes a module on recognising and explaining FND, which can be found at: rcgp.org.uk/learning-resour....

In 2023, the National Neurosciences Advisory Group developed a clinical pathway for FND, which can be found at: nnag.org.uk/optimal-clinica.... ..but this is currently not funded.

NHS England (!)is in the process of updating the Specialised Neurology service specification. This will include FND, which is not included in the current published version.

The updated 2023 guidance also outlines that the severity of the symptoms of FND often fluctuates and increases during times of stress. The guidance is available here: nice.org.uk/guidance/ng127.

NICE is also currently developing a guideline on rehabilitation for chronic neurological disorders and acquired brain injury, more on which is available here: nice.org.uk/guidance/indeve.... FND will be included in the final guideline, which NICE expects to publish in September 2025.

We have also set up a UK-wide Neuro Forum, facilitating formal, biannual meetings across the Department of Health and Social Care, NHS England, devolved governments and health services, and Neurological Alliances of all four UK nations. The new forum, which met for the first time on 10 March 2025,

[Prosaic_One]

It’s such good news that you got a response at all! As an American citizen, I couldn’t participate in support of this petition but I hope this can bring about real change for all of you in the UK. I hope to hear from you all in the near future regarding better treatment and a more informed medical community. ❤️

[Shimmyaway in reply to Prosaic_One]

Thanks for your support ..all petitions that get over 10k names are entitled to a gov reply, but I am surprised we got a reply before the petition deadline in June. Things look more hopeful and FND is at least being included in medical curricula and in discussion of the neurological landscape .. including equality within it ...but some things remain murky .. such as the fact they did not mention that the clinical pathway for fnd is not funded, that the 'guidance' offered to health bodies (who determine funding) entitles us only to 'non specialist' support/treatment for such a complex condition and there are serious questions not considered here about WHO is responsible for organising treatment and where will it be based ..with neurologists or psychiatrists or even better a team with both .and more. Work in progress ..but at least better than before ..one step at a time.

I imagine, esp with your current administration that such issues would not be in line for consideration at gov level, and petitions just might not be flavour of the month.

[Prosaic_One in reply to Shimmyaway]

Wow, those are some murky parameters indeed! So frustrating but the fact that you’ve organized enough to put pressure on the medical community to better educate themselves is a step forward. I fear that we are each on the frontlines and won’t necessarily reap many benefits for ourselves but rather help those coming behind us. I hope to get healthy enough to be a voice for those with FND, even just to educate themselves is public enough that people will show us all more compassion. My neurologist, who diagnosed me, admitted she knew nothing about the disorder, nor how to treat it. She also took no steps to inform herself and told me to “be strong”. That was my introduction to my diagnosis. I find it inexcusable.

Here in the US, FND can only be diagnosed by a neurologist so I have access to one, but they have done nothing other than send me to this website. Since then, they’ve been dismissive of my symptoms. Our current political landscape has made every day terrifying for me and others with disabilities. Every day I watch the news and something horrible has taken place. If that monster is successful in cutting Social Security or Medicaid, I will be homeless and without medical care. I haven’t slept more than 3 hours a night since he took office.

All any of us can do is be vigilant and brave our way through. I wish you all the best and stand with you in solidarity, from across the pond. 💗