Is Fibromyalgia a permanent & substan... - Fibromyalgia Acti...

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Is Fibromyalgia a permanent & substantial disabilty?

pensham profile image
10 Replies

Evening all

I used to hold a Blue Badge. Had it for 3 years. It expired November 2012 and my council, Dorset, is refusing to renew my badge because they, the Department of Transport and the OT they involved say Fibromyalgia does not meet the criteria of being a permanent and substantial condition.

I have appealed, sending info about Fibro and a letter from my doctor and was turned down. And I have taken DCC to Local Government Ombudsman. This week I recieved back a reply from the Ombudsman dealing with my case - my complaint was the Council failed to consider adequately whether I had considerable difficulty walking before refusing to renew my blue badge and turning down my appeal. But it looks like I've only been successful in getting the Council to review their online form (it is terrible!). The Ombudsman sees no fault because the Council had to consider whether I have a permanent and substantial disability that means I can not walk or have considerable difficulty walking thusly the Council does not consider Fibro to be so and I fail eligibility criteria. DfT advised the Council that fibro is variable and intermittent. And the OT that was consulted felt a walking assessment would not provide any additional benefit because Fibromyalgia did not meet the condition of being permanent & substantial.

Who decides whether Fibro is permanent & substantial?

I'm at a loss! I live in the countryside, a 20 minutes drive from any town and feel life has been made that extra bit hard because my badge has been taken away. Ok I can walk well most days BUT I'm in pain everyday! I believe I've had Fibromyalgia all my life (traumatic birth) but it has only become apparent and worse with time (if you don't know any different than to you its normal to have muscle aches and pains daily - but apparently healthy individuals bodies don't), daily stresses of life, bereavement etc etc. I was officially diagnosed with it November 2007 along with CFS (which I have recovered from) but unofficially go back to 2004 with problems. I saw a specialist October 2011 who reconfirmed the Fibro diagnosis and basically told me to adapt my life around it as I would more than likely have it for life. Is this not permanent and substantial?

How soon can I reapply? Should I even consider it? I don't know what to do.

Pensham

PS Hi everyone I'm new on here and so sorry this is my first post but I found the forum and hope to reach out for some help and advise

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pensham profile image
pensham
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10 Replies
Extremelygrumpy profile image
Extremelygrumpy

Yes it is permanent. But substantial is the question .... I have had fibro for 23 years the first seven were very easy to cope with painkillers and gentle exercise, then I had 3 really bad years then it got better apart from sleep but 5 years ago it got to be a real problem and arthritis joined it and I have been in real substantial pain for the last five years... Some people on here manage to work with their fibro others don't and that's the problem we have trying to get people to realise the varying degrees it encompasses .... When I was first diagnosed I didn't see it as much of a problem at all with exercise and pain killers as needed I lived a normal life, now I am inconstant pain have tablets and injections for it plus stuff for my arthritis, but we are also told it isn't progressive.... I think most of us on here would disagree.

Welcome to the forum and as everyone else will tell you if you can cope with it always appeal

VG x

munchkin62 profile image
munchkin62

hi i dont know if its different here in scotland but i only had to show my dla awards letter to get my blue badge mind you that was a cpl of years ago i havent renewde it because it think it is wrong thatthey now charge £25 for it ,hope you manage to get it sorted all the best .xx

staceymarie76 profile image
staceymarie76

FROM THE FM ASSOCIATION:

between 2.9 and 4.7%. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life.

Personally i think the health system and government bodies in general are still quite ignorant to FM, and it seems to vary depending on which area of the country you live. I live in Cheshire and i have been refused DLA even though i now use a wheelchair to allow me leave the house at all, yet i know others that have successfully claimed in my town without a problem?

I know that they have had to show that are in receipt of mobility allowance in order to receive the blue badge and pay a fee of £10:00. xx

fmauk.org/what-is-fm-highli...

bon0504 profile image
bon0504

Hi

Sorry to hear that you were refused your blue badge and I understand the problems this will cause you. I live in Scotland and have just renewed my Blue Badge under the new scheme. When I saw the new form I worried that I would be turned down as it started off more like a DLA form (which i was refused 3 years ago!), but when my husband handed it in to the council department for me, the girl said I did not need to complete the whole form as they had my details on record. He paid the fee and I got my badge out in the post later that week! This new system was supposed to ensure that all Councils were applying the same process in administering the system - looks like they can't get that right either! Why is there no universal agreement among medics and other health professionals regarding FM? Do the people making these decisions know anyone who suffers from FM? I hope you can appeal this decision and get your badge. As it's the Council who deals with this, have you spoken to your local Councillor about taking this up for you?

LindseyMid profile image
LindseyMid

Fibro is variable from one person to the next and can vary from month to month and year to year. But the same is true of many other chronic conditions, such as Multiple Sclerosis. Your symptoms should be assessed by your doctor to see if they make a permanent and substantial disability. One factor that should also be considered is that many people with Fibro have other conditions alongside it and often these "decide" how manageable the Fibro will be.

The DWP has stated that Fibro is "a real and potentially significantly disabling condition". I don't know if that would help with the DfT. It may be worth contacting your MP and getting them to ask why one Government department says something different to another Government department!

LindseyMid profile image
LindseyMid in reply to LindseyMid

The letter extract containing the above quote is on this page:

fibroaction.org/Pages/Benef...

pensham profile image
pensham in reply to LindseyMid

Thank you. I think I will contact my MP as it is a very good point.

jimjams profile image
jimjams

I believe what anyone (officials etc ) should be looking at here... is not the LABEL of the condition - but HOW it affects you.

If this was done it surely makes sense. As we know, with all conditions/syndromes etc there can be HUGE variability from one person to another.

I do feel that a sheer blanket allowing of a blue badge if one suffers from condition A or syndrome B would be wrong (just think how ridiculous that would become), but instead, if they focus instead on what impact (mobility etc) one's condition has... it would seem to me much fairer.

pensham profile image
pensham

Thank you for all your replies. The fibrofog is visiting me at the moment so having a few problems processing it all.

Glenys profile image
Glenys

Good luck XXG

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