Avoiding A&E: Hi I think everyone here... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Avoiding A&E

DNE92 profile image
DNE92ModeratorFND Hope UK
13 Replies

Hi

I think everyone here has experienced medical staff and been humiliated in A&E. I finally gave up hope when I had a seizure, hit my head a right bang on the floor, a policeman pointed out to a chatting group of 4 nurses and just ignored me. Lovely. When my family returned from getting a drink (as the seizures can be long) they had to get me up of the floor and onto a bed. When I later tried to get up, the same group of nurses still chatting just stood there and said disparagingly "look at her now" and made sure I heard. So when I broke my foot about 5 weeks ago ( I had a serious injury to it requiring surgery a long while ago) I just laced my Doc Martens really tight and hobbled about the house until I think it has now recovered. I've also been assaulted by a paramedic during a seizure. My complaint was upheld by the Scottish Ambulance Service. And my lovely PIP assessment is on Tuesday 13th June at 2pm. Oh goody can't wait for more misunderstanding, arrogance and the inevitable humiliation and advising no to my PIP claim. Roll on the Tribunal. I'm actually a Scottish solicitor, although haven't been able to work for the last 4 years but have retained my practising certificate. So the Tribunal will get me out of the house at least.

Also moving house. I live in a quite secluded hamlet and was talking to a woman I know has PTSD and I took a seizure and her retired shrink husband took her away and left me in a seizure in a secluded field. When my husband phoned to find out what had happened (he's a professor) he got a tirrant of abuse about the diagnoses being a lot of nonsense and I was attention seeking and best to leave such people alone. They soon get up when they don't get the attention they crave. My family would have been scared to death when they came home. Where would they have started looking. Luckily that didn't happen.

Happy days.

Lou

PS : looking forward to the meet up on 19th.

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13 Replies

True, we have all been on the end of ignorance but to leave you in a field in a seizure, don't have the words (well I do but not printable) I'm very glad you are ok. Good luck with your pip. Kindest regards Lisa-anne

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to

Thanks. Will probably have a seizure during the assessment - the only one I will ever look forward to.

Lou

in reply to DNE92

I had my assessment at home in seizure but luckily this was my 2nd one as first totally messed up, the lady doing assessment realised I was incapable of answering and in agony and helped with forms and questions. I was sooo lucky this time.

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to

Hi Did they finally give you your PIP? Hope so. I know that Dr Jon Stone has advised the Tribunal about FND.

Cheers

Lou

in reply to DNE92

Hi, they did on my 2nd one and backdated a bit last December and I didn't have to wait too long either. Good luck 🤞🤞🤞🤞🤞🤞

ukmsmi4 profile image
ukmsmi4

Jeez, that is unbelievable! How dare people do things like that. 😡 I don't know what to say I'm so shocked that people could be so judgemental, harsh and uncaring.

And they call themselves the caring profession. I'd be ashamed of myself if it was me.

Good luck with your assessment. I really hope you get better treatment than that, it's heartbreaking.

I'll keep everything crossed for you.

Love and hugs, Margaret. xxx

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to ukmsmi4

Thanks for that - I'll let folks know how I get on - once the DWP has taken another 4 months to progress things!

Cheers

Lou

geordie-girl profile image
geordie-girl

Hi Louyse. The way they treated you in A&E was despicable., and they are meant to be caring. Some people are so ignorant of our condition. I will keep my fingers crossed for you for the 13th June for your PIP assessment, I had a lovely person that came and did mine. Hope yours will be understanding like mine was. Please let me know how you got on. The person that left you in a field I have no words that can explain how I feel about that. Maybe we could meet up sometime. I live inn Newcastle upon Tyne and it is not far by train to Edinborough. You are in my thoughts take care love Babs xxx

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to geordie-girl

Hi

A meet up would be nice. Let's look at our diaries - not that I have a lot going on! There is the Edinburgh meet up on the 19th June if you can make that. There's a few of us going, me too.

Cheers

Lou

geordie-girl profile image
geordie-girl

Hi Louyse. I will be away on 19th June otherwise I would be in Edinburgh. We will make a date for another time. Please tell me all about the meet up. Take care, hear from you soon. Love and hugs Barbara xx

Tewa profile image
Tewa

Yes...this is what happens to all of us over and over again. We are seen though a 'filter" and it carries over time and time again. So, no matter what happens, it is being dismissed. I hadn't realized that they think we are attention seekers with the symptoms. The behavior of the drs and nurses now makes sense if that is what they are thinking.This abuse goes on.

I did get the report from the neurosurgeon...the dr I was sent to by mistake. It confirmed that I was having myoclonic movements, mentioned MS, confirmed my symptoms were neurological, and was very supportive of the reality of my life since this illness presented.

I am so sorry to hear about what is happening for you. Sounds like your husband is supportive. I do my best to speak up and advocate for myself as I am alone with no family in the state.

geordie-girl profile image
geordie-girl

Hi Louyse. How are you doing. How did the Pips assessment go, hope it was not to stressful. Been thinking of you , take care, lots of love and hugs xxx

angelite profile image
angelite

That's right Lou, we're all attention hungry fakers ! Absolutely furious on your behalf ! So sorry you have had to deal with such ignorant people : ( x

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