Health Organization for Pudendal Education

I'm just a bit cross this morning because I've just learned that my blue badge renewal has been turned down. The blue badge 'team leader' has explained to me that the badge is for people who have mobility problem (duh) and that pain cannot be taken into account. Excessive pain due to walking? - not relevant And delayed pain? - not relevant. If you are physically able to walk, then you don't qualify, full stop. No matter that if you walk too far then you'll trigger a pain flare which will confine you to bed/sofa for a week, that's not relevant. It is all down to - can you walk? do your legs physically work? Pain doesn't come into it.

Oh, and they can't find any information about pudendal neuropathy, they've never heard of it before, despite me putting it on my form last year.

Not 'eligible subject to further assessment' which is what I was expecting - turned down completely.

I have had a blue badge for the last year and it has made such a difference to my life. I've been able to get to the library, the post office, the supermarket (well, sometimes) and even go for coffee with friends. Not any more, it seems. Even hospital appointments have been so much easier because I haven't had to deal with a long walk from the outer reaches of the hospital carpark.

And yet - quoting from the Department of Transport's guidance for local authorites -

(b) the applicant has very considerable difficulty in walking

The applicant will need to show that, as a result of their permanent and substantial disability, they are
unable to walk very far without experiencing severe difficulty. Several factors may be relevant to determining this:
Excessive pain reported by the applicant when walking, or as a consequence of the effort of walking.

After that it goes on to discuss breathlessness. And after that -

It does not matter whether excessive pain or breathlessness occurs at the time of walking, or later - what
counts is that it is a direct result of their attempt to walk.


However the local authority does not have to follow these guidelines, and it is certainly clear that they aren't in this case.

The reason given in the refusal letter is because my mobility is too variable following criteria set out by DFT. I've been told this is not because sometimes my mobility is too good for me to qualify - but because sometimes it is too bad, and I can't cope with driving or being a car passenger at all, so having a blue badge wouldn't be of any help to me on those days.

Utter daftness.

I am going to appeal. Yet again we need more awareness of PN.

Calluna,
So sorry to hear another fight for you when you are right!!! I think here in the U.S. it is not able to walk more than 200 or 300 feet without stoping or something but I got mine for foot pain problems before PNE struck me. Awareness is crucial for so many aspects of our lives that are impacted. Best of luck to get this sorted out. I am angered on your behalf. Sorry I have no advice or help just sympathy to pass to you.
Janet

Wow Calluna you definitely have to appeal, maybe a little more emphasis on your capabilities rather than the diagnosis MIT be better for you. PN is not well known but it is known to disable mobility perhaps that will be the criteria for you to regain your badge. The systems in different countries seem to vary so much, I got my badge approval years ago and now it is renewed on the older basis of my gp. I am grateful of its use every time I use it.

I rang up today and told the relevant people that I'd like to appeal the decision but I honestly don't think I'll get anywhere. The letter says that my only grounds for appeal is if my circumstances have changed, or if I don't feel that the Blue Badge Team had all the facts.

Next step, I am told, is that I'll be given an appointment to come in and see an Occupational Therapist who will 'assess my mobility'. My legs are still going to be in perfect working order. It comes down to the fact that they say pain is not relevant. I believe that is morally wrong. We'll see.

Thank goodness there is an appeal process, you must try Calluna!!! you are right, Utter daftness but that is what I have come to expect tbh.
So you are penalised for their ignorance . . . . not many people have heard about PN we know that, unfortunately too well.
I'm hoping that your appeal and explanation of how the problem affects you will reverse this decision. They obviously are not aware of the full facts.
With these things they say that the actual diagnosis doesn't come into it, it is the lack of functionality that does matter and pain affects functionality. No one could argue with that.
I know that my Mam had a blue badge that was going to be taken away but her doctor insisted that it she was allowed to keep it. I presume he wrote a letter??
Could you get your GP to do the same or does this not work anymore?
Good luck, I feel sure that once you tell it like it is, you will be successful.
Do they know that you have had surgery and now think that you are cured?
Helen x

Still trying to get an appointment to see my GP since last week! Every day I ring up when the phone lines open and go in the queue, by the time I am put through it is 'sorry but all the appts for Dr B have gone now'. It is only possible to book 7 days in advance, every day another lot of appointments is released, and they go like lightning. I will keep trying of course. And I will tell him about me losing the badge.

With regard to pain affecting functionality - mobility, that is, in this case - one Team Member told me that they don't take pain into consideration at all, it is only about whether my legs actually work, and being prevented from walking because of excessive pain is not something they can take into account and another Team Member told me that because on some days my pain is too severe for me to walk any distance at all, then my disability is too severe for me to benefit from a badge. So they aren't even being consistent.

I suggested that they talk to my GP or to Dr G perhaps, they told me that the decision is theirs alone and they don't have to consider any doctor's opinion.

Sorry, ranting again. This has got me quite cross.

If I don't get one on appeal then I shall write to my local councillor. And if I still don't get one then it will be letter-to-MP time.

My husband says he has heard they are supposed to be having a clampdown on badges so I suppose it is all part of that.

Hi Sunil,
You have contributed some great information and advise to this forum but I wouldn't call your last post one of your finest. Wouldn't you rather remove it perhaps?
I would hope that people here offered support to others in our situation, rather than have a 'my situation is so much worse than yours', debacle', although I do know that Calluna has much more pressing family matters at the moment to grace you with a reply.
Please reconsider your post.
Helen

i agree with helen, posts like yours will put people off joining our growing community, we all come here for support and guidance, i understand your frustration with your problems, we all have them, but comments like that dont get us anywhere


andrea

I just feel very sad at the moment for the way that this thread is going.

Rosemary

I read the original post about the refusal of a Blue Badge with interest as my husband has recently been suggesting that I apply for one. I then missed a few days and am now saddened to see how the post is going. This is such a wonderfully informative and supportive site so it is quite a shame to see what has happened to this thread.
I am seriously thinking of applying for a Blue Badge so will keep you posted as to how my application goes.
Julia