BBC2 Tonight -Hospital

[Dot50]

UK, 9pm tonight, (19th March) programme coming from a neurological hospital?

Talking about find and treatments.

[kjkla85]

so brilliant to see FND on mainstream TV!

[210272 in reply to kjkla85]

I figure non-contagious conditions are not going to get much funding for a while. But maybe when the pandemic is over and now FND is recognised as a core psychiatric disorder, the funders will be more willing to help. I don't have FND but do believe in equality when it comes to access for health care.

[Mygeordiebud in reply to kjkla85]

Hi yes brilliant to see on mainstream TV my ears pricked up when FND was first mentioned on the program.

The waiting times quoted were years for in house treatment. Rosa Burden Center Bristol operate a 3 week in house program with all different medical staff there.

I only had to wait 3 weeks to get in there 11/2 years ago don’t know it waiting list is longer now.

If you have been diagnosed by a neurologist then you can get your doctor to write to them with regards being on there program.

I found it very good for helping me deal with traumatic events that had happened to me and also physio was great too they would video your walking and then playback footage to show how you are walking and how to correct it.

So anyone in the Bristol area or as far down as Cornwall this is be best place to help you start healing a bit.

Hope this help someone as dealing with FND is a nightmare as any part of the body can stop working properly from 30mins to hours to days to months for some people.

My paralysis comes and goes but I count myself lucky as function comes back eventually one day it may not come back then I will have to deal with that.

Mark H....

[Evie76]

What were your thoughts on the programme? I get increasingly fed up when they try and say it's trauma related!!

[Carwig in reply to Evie76]

Yes me too, I believe mine was brought on by chronic pain but because I became depressed with being in chronic pain and feeling there was no support, I felt when I was diagnosed with FND they put it down to depression

[210272 in reply to Carwig]

Carwig - I don't think they are meant to make this diagnosis on that basis or certainly not on that basis alone. If you're on fb you might enjoy a great talk by a medical student about Fibrodysphasia Ossiificans Progressive (FOP) and the disempowering effects of pain. It's on the Findacure page

[Carwig in reply to 210272]

Thank you I will take a look.

[210272 in reply to Evie76]

Evie76 I've been watching the migraine world summit today and there is some fairly compelling evidence that adverse childhood experiences (ACEs) can lead to headaches and other neurological complications later in life. What bothered me in the Hospital show was that the lovely woman whose Dad had committed suicide when she was 12 had her trauma re-triggered by questions about it.

My feeling is that therapists need to be more cautious when asking for information about ACEs and call them by their proper name.

On the flip side there's been some interesting research about highly successful people working in medicine, politics, other sciences and the arts who lost a parent at a young age and/or suffered emotional/physical abuse as children.

[kjkla85 in reply to Evie76]

Yes I don't think i fitted into that category of trauma related when i received the diagnosis. Eventually I found out I had an untreated physical condition - autoimmune underactive thyroid - and once I started treatment for that I felt symptoms ease and eventually go. I think they said it was potentially anxiety related to my failing physical body...who knows.

[210272]

They used the word 'mad' with a patient. Appalling. I thought the physio was great

[Mikey1960]

I was disappointed that it only focused on the really exceptional cases. Even on the programme the gentleman stated that medical staff didn’t know what FND was.

What is wrong with the medical world why don’t GPs know or understand someone who has certain symptoms that they should be checked and referred. It took them over two years to diagnose me.

Even now l have to explain to GPs about FND and give them our pamphlets and posters to educate people.

When l am out people look at you as if you are drunk. More education for medical is required as l am sick of explaining myself over and over again.

Can something be done please