Work capability assessment telephone call cancelled .

[Littlecook]

My work capability assessment telephone call was cancelled at short notice with no reason why , so I called them told me didn't need anymore information had enough on form and from doctors , don't know if that's good or bad it's a waiting game again.

[Aberheart]

Hopefully it’s a good thing. Hope it goes well for you 🤞🏻

[Analogue45]

hi that could be good as the doctor and information , I take it as there have enough information for claim,,

[Bugsy2167]

Hello, this is my first post here. I have been in your shoes when it comes to this subject.

I was told that I had failed my assessment, so I was then told to appeal the decision, so I did, however, while I was waiting on information on my appeal they did a second assessment around five weeks later. This time it was a different woman who did the phone call and after I told her what I was dealing with and that I was appealing it, she told me that I would be awarded LCWRA. I then received an e-mail a couple of weeks later about my award. I later canceled my appeal which was still some months away. For me, this just goes to show how much the system is messed up.

The positive side of this is if you do get awarded LCWRA your UC payments will double and you don't have to go to your JC or send any more sick notes to them.

[Littlecook in reply to Bugsy2167]

Good morning Bugsy I'm so pleased you managed to get sorted its so nervein waiting for a phone call ,I was the same with pip so I'm waiting for both answers I would rover work and feel normal but I've only got 5 years to work .

I will keep you updated.

[Bugsy2167 in reply to Littlecook]

Hello Littlecook,

I find it hard to deal with all of this most of the time, as I never get a day without pain or other strange stuff going on with my body. I lost my job last year and then get told this year that I have FND on top of ET and having spinal issues. Just trying to live with my health issues is driving me crazy, not knowing what the future holds for me. I guess that I am lucky in that I don't have these fits that others talk about. As I suffer with balance issues when walking and have all sorts of other stuff going on with my body at the momment and no help moving forward, It's asif you get told that you have FND and then you are sweeped under the carpet out of sight.

[210272 in reply to Bugsy2167]

Hi Bugsy2167,

I've been reading about the NHS improving services and treatment for people with pain so I hope you can access that soon since it's horrible to have that on a daily basis and the new treatments have been shown to reduce depression too. Have you had any formal assessment/diagnosis for your balance issues? Many balance issues are treatable if not curable but until you have the correct diagnosis it can be hard to move forwards without appropriate help.

Since you're in the UK it might be worth using the feedback button on Jon Stone's neuro symptoms dot org site to let him know about what you said about getting swept under the carpet, out of sight once you've been told you have FND since many of us here have heard the same from others and your voice deserves to be heard. You could ask for a recommendation for a neurologist who won't do that to you and also ask for information about a reputable balance centre near you so that you can then take these recommendations (if he gives them) to your GP and ask for the relevant referrals. Were you told what the 'rule in' signs were for your FND dx? If not, it could be worth letting Jon know about that, too.

[Bugsy2167 in reply to 210272]

Hello 210272,

Thank you for the reply, I was sent back to the hospital by my GP as she thought that I might have developed Parkinson's' as it had been three years since I was told that I had ET, then when I went to the hospital this time I was told after an assessment that I had FND and given a piece of paper with a web site address on it as my hospital didn't deal with FND anymore due to funding issues. Later when I saw my GP again she tried to have me referred to a hospital that still deals with FND, but the answer was NO. My main symptoms are balance issues while walking, internal tremors, severe pain, and fatigue. Then on top of that, my spine is a mess due to years of heavy lifting, etc.

When it comes to the FND, that explained a lot about all the crazy pain and feelings that I had pre-diagnosis. Now I just want to know if what I am dealing with now is all that I will have to deal with or could the FND progress and I end up in a wheelchair and also suffer from these fits that some people have. I am now waiting on my GP as she is looking into what is available (if any) for me in my area as I am the only patient in my practice with FND.

[210272 in reply to Bugsy2167]

Hello Bugsy2167,

Thanks for your reply and it sounds like you have a great GP in your corner. I know there is a Pathway for people with FND in the UK but I also know that accessing appropriate treatment is challenging so I hope your GP can find the best treatment centre for you. I can recommend the place in Bristol and I think they have some inpatient facilities.

There is a correlation between FND and pain but it is a correlation, not causation so I hope they gave you a detailed breakdown of the 'rule in' signs that are needed to make a dx of FND and are taking into account what you said about what could have caused the pain. Fatigue is so common and people with it should not automatically be in DSM via a FND dx. I still think your GP will need to help you get to the bottom of the balance issues since until you have a clear diagnosis, it's hard to access the right treatment (and avoid treatments that could harm you). As far as I can tell there's only one balance condition listed on Jon Stone's site - PPPD - but it is being massively over diagnosed including for people who don't meet the current criteria for it and other conditions are being missed in the process. The founder of the Auditory Vestibular Medicine International Board thinks patients should reject it as a diagnosis and seek a second opinion. Plus Jon Stone doesn't keep that part of his site up to date eg with the Cochrane review of medications or the relevant papers. However he has said, repeatedly, that handing people a piece of paper with his website on it isn't acceptable so I still think it would be worth you giving feedback via his site, especially since you've had a knock back from the hospital and reported feeling you'd been swept under the carpet out of sight (which is commonly reported by people with a FND dx). You can certainly ask for a recommendation for a neurologist who won't do that to you and for a recommendation for a reputable balance centre in your area so your GP has something to go on.

Your concern about your prognosis is also worth asking about via his feedback form since you don't need any additional stress in your life and Prof Stone should be able to tell you if you are likely to develop seizures or not.

All best wishes and here's hoping you can, at least, get the balance stuff diagnosed and treated soon

[Shimmyaway]

HI .I've just noticed there are some 'vestibular rehabilitation exercises' on the Brain and Spine website ..should be done under supervision ..but that's up to you.. Why not take a look if you have not yet been offered anything else to help you ? Best foot forward.