Hi all. I have functional neurological disorder, which gives me wide array of neurological symptoms (mainly sensory, but also motor) and chronic fatigue. Although I’m never free of the symptoms and fatigue, some days are a lot better than others and there is a distinct flare-up/remission pattern at the macro level, even if predicting trends at the micro (day-to-day, hour-to-hour) level is at best difficult. I have been turned down for a Blue Badge on the grounds that my condition is variable and I’m finding it hard to source decent information on appealing against the ‘your condition is variable’ argument. Given that many of you may have found yourselves in a similar position, and given that I’m sure all of you will understand what it’s like to have neurological symptoms, fatigue and flare-ups, I was hoping to hear about your experiences and/or tips with regard to appealing against rejection on the grounds of a variable condition.
did you go through your local council to get your BB? IF so i assume you appeal to them. you must make sure you have all the relevant proof, its rather like filling in forms for PIP its just as hard to get. Its no use just saying you cant do this or that you have to have proof you can by medical team. also aids too help. You should only describe your worse days. I am sure if you are haviing a better day you wouldnt need to use your BB but when you are having a worse day you more then likely will.
if that makes sense.
Most days i find it difficult to…
with MS its like a roller coaster up and down until you feel sea sick lol.
FND i assume you had no positive tests for MS then?
anyway my husband got his BB with his COPD which is variable because we had a lot of stuff from OT. physio and doctor about his condition. towards the end of his life he could barely walk from his van to the supermarket to get his beer and fags.
Thanks for your replay, Crazy Chick, and I’m sorry to hear about your husband.
I was diagnosed eight years ago, and there haven’t been any signs that it was MS misdiagnosed as FND. The hardware/software analogy seems apt. In MS, the hardware gets damaged. In FND, the software is full of bugs. So I might find it hard to move my fingers or my lower lip for a few days, or I might suddenly be dazzled in one eye for 20 minutes without any source of light causing it. Several GPs think that a diagnosis of ME/CFS would be more appropriate, as I have the hallmark symptom of that, namely post-exertional malaise, and ME/CFS can involve lots of little neurological anomalies.
I applied for a blue badge after reading that people with anxiety could apply. Because of the post-exertional malaise, I’ve becoming rather phobic of exertion and as a result don’t tend to go out unless I know exactly how far I’ll have to walk. So I have intense anxiety about exertion plus the physical symptoms as well. But the Council has rejected me on the grounds that ‘the assessor indicated that you are variable in speed, distance and time when walking’.
Anyone else have any advice? It would be much appreciated!
Maybe get supporting letters from your GP and/or MS consultant.
I feel that the application process for a blue badge needs a total overall, even though for me personally it was a straight forward process, I rang up my local council explained I had MS and the badge was awarded, all I needed to do was supply proof of the MS.
I sent in my letter I had off the consultant when I was diagnosed.
My local council class MS (any level) as one of the disabilities where you are automatically allowed a blue badge.
On the flip side though, I know people, even some distant family members who clearly do not deserve this privilege.
The Blue Badge scheme is so easily abused, hence why some councils are very strict.
Get some supporting letters.
Sadly no useful l advice. It sounds like they do not understand the concept of constant illness with variable symptoms and severity. It is an ignorance that could be fixed with 3 mouse clicks or listening for 5 minutes before jumping to conclusions
Good luck
mick
Hello
Good idea to come on here. You’re right that FND & MS have some similarities. In fact, there are often people who come on the newly/undiagnosed board who we direct towards finding out about FND when they have symptoms but no evidence of ‘hardware’ problems. Sometimes people feel they are ‘fobbed off’ with an FND diagnosis when actually it’s just as valid as MS.
In terms of your BB application, jactac is right, you need to gather some evidence of your symptoms.
Letters from: your GP, neurologist, physiotherapist, other healthcare professionals. Also any carers or just people who help you with day to day things, like shopping, housework, laundry, even unpaid friends and family.
You need to demonstrate that the majority of the time you are unable either physically or mentally to walk 50 metres. I assume you’ve seen this: https://www.gov.uk/government/publications/blue-badge-can-i-get-one/can-i-get-a-blue-badge
Or, have you made a claim for PIP. I know that people often find it easier to claim for a blue badge than PIP! But it’s worth considering. Again, it’s all about knowing the rules and providing evidence (similar to the evidence for a BB). Have a look at https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/
Best of luck with your appeal.
Sue
What benefits are you receiving as proof of these can help with qualifying for a BB.
Thanks for your responses all.
I submitted extensive documentation on my condition, including information on symptoms from my medical file to letters from specialists I’ve seen (three neurologists and the chronic fatigue team). Because I’ve had FND for years now, this ran to about 50 pages. From the Council’s response, which details an assessor’s conclusions, it looks as though the assessor hasn’t bothered to read through all the documentation, as the stated reasons for rejecting my application run counter to some of the details contained in the covering letter and evidenced in the documentation supplied. I will, of course, address this in my reply.
However, the main obstacle remains the fact that I am ‘variable in speed, distance and time when walking’, precisely because my condition is variable. Here’s the main problem: although labelled by neurologists as FND because of all the neurological anomalies, my FND resembles ME/CFS plus neuro symptoms. Both the neurological symptoms and the fatigue are exacerbated by exertion. As I stated in my application, it is often the case that I can walk a given distance, but that the consequences of doing so can vary from comparatively benign to severe. This has led to me being somewhat housebound, because a five-minute walk can leave me bed-bound for three days, even though on other occasions I can walk a mile and be no more tired than someone who has run a mile.
In fact, reading that people with severe anxiety are entitled to BBs is what prompted me to apply speculatively. I figured that I had both physical health problems and severe anxiety about exertion due to the potential consequences. I provided evidence (letters from therapists) that show my anxiety is linked to exertion. However, one of the assessor’s grounds for rejection was that ‘I do not experience very severe or overwhelming anxiety or hypervigilance when walking between a parked vehicle and your destination’. No, because I don’t go out in the first place, and if I do go out, I may be experiencing overwhelming anxiety all the time during exertion, not just between vehicle and destination.
I’m not on benefits, but I did apply for PIP at the same time, again rather speculatively. If I’m not eligible, fine. But if I did turn out to be eligible, I’d kick myself for not applying sooner.
Hi, I’m sorry I can’t offer much advice but just wanted to say that I am not on any benefits and I was awarded a Blue Badge in November 2019. The council barely wanted any information. I filled the application in online with limited information and sent them a letter from my gp with 1 line that confirmed I was diagnosed with Ms in 2013 and my application was granted within less than 24 hours. I don’t understand the argument they have put forward for refusal, well obviously I understand it but I don’t understand how they can justify that as a ground for refusal! I hope you get that decision overturned. Best wishes. x
It all depends on the person within your Council dealing with the application.
This article seems to suggest that variable conditions are covered and that councils cannot reject applications on the basis of a condition being variable. Does anyone know what basis in law/guidance that principle has? If not, I’ll get in touch with the ombudsman and ask (their contact hours are limited to 10:00 to 12:00 at the moment).