FND Hope UK | Inaugural FND Parliamentary Event 8th February 2023

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Жыл бұрын

Thank you to all the MP's who joined FND Hope UK’s inaugural Parliamentary Awareness Day on Wednesday 8th February, to discuss the action needed to deliver better care and support for those living with FND in the UK.
The members of parliament signed up to the charity’s declaration, committing to support steps towards:
1. A dedicated FND care pathway at every UK neuroscience centre, which reflects the National Neurosciences Advisory Group (NNAG) optimal care pathway
2. The development of FND guidelines by both NICE and SIGN, to ensure consistent care is available across the country
3. Increased training in FND for healthcare professionals, to raise awareness of FND signs and symptoms and ultimately improve diagnosis
#FNDAware #functionalneurologicaldisorder #LetsTalkFND

Пікірлер: 14

@millymay0025 Жыл бұрын

Outstanding! Thank you, thank you thank you!

@FNDHope Жыл бұрын

You're very welcome!

@cassandravanhornwyman9022 Жыл бұрын

We need all the help we can get, I was told by my own doctor to "find your own neurologist that believes n FND let alone knows anything about it", I am shattered with the non-believers and the Skeptics and pretty much getting made fun of anytime I go into the emergency department which is very often, I'd say eight of the 10 doctors around here haven't even heard of it I've had to Enlighten so many people about it when they're supposed to be helping me I really wish we could be getting this information and Canada spread out to the doctors in Canada or I guess leave Canada and move to the UK thank you for your knowledge until everyone out there keep fighting the fight we will be heard

@jackyeastwood9294 Жыл бұрын

Go Cass!!!! . It took me from the age of 6 until 41 to get a diagnosis. Only when I had palatal myoclonus ,which you can see and hear and myclonic jerks did anyone believe me. I had to film myself. Noone believed me !!! Doctors in one type of area ,don't talk to others in their fields so noone puts the whole picture together. The person that spotted my brain wasn't connecting right was a neurochiropractor. I couldn't look up to the left. It took her to listen. Its such a cruel illness. I lost jobs time and time again. Keep strong 👍

@FNDHope Жыл бұрын

We are so sorry to hear this Cassandra, which is why FND Hope UK are doing everything they can to change the way FND is understood.

@ghosthawk65 Жыл бұрын

Fantastic news, my husband was lucky enough to get a swift diagnosis from a neurologist at Walton in Liverpool, unfortunately follow up support is patchy and uncoordinated.

@jackyeastwood9294 Жыл бұрын

Finally. !!!!!

@cassandravanhornwyman9022 Жыл бұрын

Let's hope this isn't just the beginning let's hope we're going to get the word out everywhere it be nice to get the word to Canada for all the Skeptics and non-believers it's a real stigmatism when I go into any emergency department here they just label it off as anxiety right away it's awful when all you want to do is be heard and nobody has a clue makes you want to not even go to the hospitals because everybody just looks at you and laughts behind your back. Good luck to you and keep on keeping on and keep fighting the fight we will eventually be heard spread the word everybody that you possibly can take care be well fnd Warrior🙏🏼💓

@FNDHope Жыл бұрын

FND Hope UK are doing everything they can to change the way FND is understood.

@cherylbetts7379 Жыл бұрын

Brilliant news

@FNDHope Жыл бұрын

You're very welcome

@Amy-tq6wm Жыл бұрын

Need this in Australia, hardly any doctors know what it is let alone politicians so it’s hard to receive any help especially in the first 6 months which is critical

@FNDHope Жыл бұрын

Our Australian representatives FND Hope AU are looking into how they can campaign for better treatment.

@Caitanya-LilaHaslam Жыл бұрын

I live in Cornwall in the UK and have tried to contact my local MP about my challenges and experiences living with FND as there are no FND services in Cornwall and professional just say i'm too "complex" and they cant do anything. I am still being passed from pillar to post after 10 years. I have been doing my best to stand up for myself but can't deny how truly challenging it is when I sometimes cannot physically speak or function and have experienced so much mistreatment and neglect when in crisis and flare up over the years, because of a lack of knowledge or understanding across the health and social care sectors. I would love to get involved in helping to raise awareness too!