REFUSED DLA

[chillijava]

hi
just wondered if anyone who has pne had been successful in claiming disabillity living allowance. i have recently applied and have just been turned down, i dont know the reasons yet as i am awaiting my confirmation letter, but it seems that not being able to sit or being able to do anything like bending, walking stretching etc without pain, is not considered a disability, i dont do these things anyway as i dont want to trigger a flare, as some of you know i am awaiting decompression surgery which hopefully should happen sometime soon.

andrea

[Painful Man]

hi
just wondered if anyone who has pne had been successful in claiming disabillity living allowance. i have recently applied and have just been turned down, i dont know the reasons yet as i am awaiting my confirmation letter, but it seems that not being able to sit or being able to do anything like bending, walking stretching etc without pain, is not considered a disability, i dont do these things anyway as i dont want to trigger a flare, as some of you know i am awaiting decompression surgery which hopefully should happen sometime soon.


Dear Andrea

I don't really know anything about the DLA criteria or claim process, but I have given it thought from time to time. PNE is most certainly a disability, it is just that it is in reverse! Unfortunately it seems that first we have to reverse the position of the brains of many medical professionals and bureaucrats before we can get the necessary recognition. There are some signs of light post Helen's meeting fortunately.

Disability tends to be equated with not being able to walk and confinement to a chair for all or a great deal of time, and that indeed is a great disability. I know people who are old and unwell. In fact I had a coffee with one last week. I wouldn't want to be in his shoes (stroke, heart etc), but he was able to be really comfortable in an armchair and have a good long chat, I was not. Fortunately, I could leave him with my wife while I frequently went off and did things on my feet. Now that's just a social event. How would it go with an office job? Or perhaps a driver of some sort? I think those that decide in these matters should try having PNE (as if such were possible), then try doing their jobs! Might open their minds a bit. However, I fear that as they don't want any more people on DLA, this could be quite a fight. It's probably a case of appeal, appeal, kick-up etc.
All the best
P_M

[nyt]

You should probably talk to a disability attorney. At one time if you could not sit for 4 hours you were considered disabled. I looked on the Social Security Government website but couldn't find the information. You might want to do some searching on their website and see what you can find.

[chillijava]

thanks all, it seems that not only do we have a condition that to most people is really a pain in the butt, (literally) , but not many people in authority know what it is either. i have had my refusal letter from the dla and i am going to appeal, but they have turned down me down for the following reasons
firstly they say i dont need help when out and about, well that is a good one! i am one of the unlucky ones that has constant burning pelvic pain made worse by sitting, bending, squatting etc you all know the thing, so when i go out it always has to be with my hubby as i have to lie down in the back of the car and i cant walk very far as this also agrevates it. its quite simple to me to stop me having a flare i dont do any of the things listed above.
the other reason i was turned down was that i can dress myself, that is true to a certain degree but i cant put my own socks on etc as i would have to bend down and as i said before i cant do that, the other thing was that i dont need help getting out of a chair, what part of i cant sit do they not understand! i spend most of my life in a prone position.
dont they think at all what not being able to sit means, like i said to dr greenslade even parallised people can sit i dont even have that one small luxury.
i am still awaiting the surgery, it was supposed to be at the end of this month but still no joy yet and i am even having to chase bupa, consultants and secretaries about this too, i really dont need to be doing this but i must say i am really ready for a good fight with anyone at the moment


andrea

[purplequest]

I got DLA on first attempt, on grounds of pudendal stuff and something else. However, so much of what makes DLA applications successful is the way they are worded. There are a lot of resources online, telling you the criteria on which the decisions are made and providing guides to filling in DLA applications and what to do if unsuccessful and you need to appeal. Pain on it's own does not qualify for DLA. They are looking for what *help* you need as a result of the pain you have, so the time and attention and this is the key - *from another person*. Equipment doesn't count. It is the total number of hours of help needed that determine your qualification for DLA. At least, that is my understanding. So, if you cannot put your socks and shoes on, emphasise that. That means you need assistance at least twice a day, or however often you need to take your socks and shoes off. That would also mean it is difficult for you to cut and file your toenails, moisturise your feet, etc and need someone to do it for you - that help would be needed however often you need to do those things, etc. The more detail the better. You would need to think of how many times you need to bend when you can't and in what situations and what not being able to bend stops you from doing and therefore need help with. You will think of other things, too and that will then build up your case. Not being able to walk does count, but it depends how far you can walk before you need help, etc and how much time the help with walking takes and "indoors" does not just count for inside the home, it can apply to a place of work or other buildings (if I remember right).

If you can keep a record for a week of all the times you need help, and take that to the appeal hearing (or any subsequent revised application), that may help. That will give a clear idea of how much assistance you need.

I would suggest you speak to the Citizen's Advice Bureau for more assistance. There may be also be a disability charity that may also be able to give you advice (I am not sure which). There is also a website which provide detailed guides on filling in the forms, but they do charge a membership fee to access the documents. I have never used them for that reason, but they claim to have a high success rate, with a forum to ask questions if you need help. PM me if you want the details and good luck.