Pelvic Pain Support Network
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still waiting (boo -hoo!)

hi folks, well it has been a month since i saw dr de mello and he did say it could be two or three months before he would be able to get the ct guided injections up and running ,which he is trying hard to do as he feels it wouild be the most efficient one for my problem, if not he could do some up through the vagina and into the pudendal nerve,also he didn't think the pregabilin would do much good for the pain,he seemed to think no tablets would do much help,but told me to stay on them,the pregabilin (at mo on 450 a day) are however helping my trigemenal neuralgia!! it is terrible trying to sit,and kinda laying at a angle on the sofa is not doing a lot for my posture and my fibro,also just lost my appeal to be moved from wrag group to support group,got to stay in the wrag group,even though i can barely walk, can't make myself a meal,bath or dress myself ,or change my clothes if my urosomy leaks,so i feel like i have really been put through the wringer,and i have just realized tomorrow i have had my year on contributory esa(although the dwp haven't notified me,and as my partner works part time so he can look after me) and two yrs ago had his pension pay out(that he has worked hard for since 16) we won't be able to get esa income based, god,i feel that not only the pain in my bum is killing me,on top of everything else i feel suicidal ....

2 Replies

Will you take the wrag/support group decision to tribunal? I really don't understand how this system works and what judgements they make deciding.

It seems to be far too arbitrary and unexplained. Hmm on second thoughts maybe that's not quite fair they do state that if you are dying, in hospital, recovering from an op or of low mental capacity to secure a place in the support group. I think that unless you are an alcoholic or drug user or one of the already mentioned, they reckon you can or should be able to work. So off to the work training groups for you (or whatever they are called) OH! except if you are contributions based they don't send you cos you are only a bother for a year now.

There must be a ton of people who fall between nearly dead and not capable of working who are told you are capable of some kind of work. It's so very Dickensian.

I really don't know how a person who is unable to sit for very long, who has pain all day etc etc is supposed to be able to work!, OK maybe you could, for a few hrs a day and then come home and collapse in pain unable to have a life of any description at all. Thanks government ministers

I do realise that there are a lot of people who say they can't work and maybe they can, but I really think that this part of the system could breed a greater benefit burdon. When some people weigh up the financial side of things, when everything is taken into consideration like council tax and other benefits the government are willing to pay out when both husband and wife are not working.

This is obviously going to be happening more and more. I expect it will become more news worthy soon. Meanwhile everyone is up in arms (if they have any, bad humour I realise) ATOS sponsoring the Paralympic games but I guess they are championing the idea that disabled people are very capable.

Now that the medical world has realised that people can be talked out of being in pain (cognitive therapies and acceptance) can get some fantastic prosthetic limb and still throw the discus there will be no or little/less financial help for those who are actually in pain.

I don't want, and wouldn't EVER say 'my/our pain is worse than yours' (it's not a competition) but I would love to know how they can cognitively 'talk' people who have actual nerve entrapments, out of being in pain. OK I do understand that cognitive therapies can help turn the volume down but it can't magically disolve the scar tissue and whatever else has that nerve painfully secured.

They drive me bonkers!!

Rant over, but still fuming for you.

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cheers helen! yes i have been to tribunal and apparently they are totally independent of dwp( yeah right!) they totally went off the atos report and some of that was a right work of fiction ,enid blyton couldn't have written better, the judge was a right pradantic man and the doctor asked me one question on my urostomy bags leaking issue, not my mobility(or lack of it!!!!) they are seemingly saying that i don't have upper mobility problems ,i think they are totally ignoring the fibromyalgia and are going on my lower mobility problems strictly on my lower back spondylosis, they don't seem to realise a lot of people (i.e the paralympics) are disabled BUT are not IN PAIN!!! it didn't help last year with my g.p being rude to me and saying unless you are dead or in a coma everyone can do some work,david blunkett works?! WHAT??? silly cow, david blunkett can't see but he is not in pain all over his body! my new g.p at same practice is nice and he did send me to dr de mello( and because i did have pne at least i wasn't wasting his time on a wild goose chase) .

my partner is on hol next week so we are going to see the new g.p explain that over the last three years how things have got worse(fibro and spondylosis) and then ask him to refer me to a certain rheumatologist at the private nuffield hosp for a consultation and examination, i want him to put all his findings down in a letter and a copy to my g.p and me, and if the rheumatologist finds problems in my shoulders and upper body that will blow the 5 min so called "atos ,physical assessment out of the water, it is going to cost me £200- £250 to do this ,

if the letter is a goood analizes i shall then send it to the dwp to see if then, i can go into the support group( apparentley the dwp can superceed a decision any time,at my tribunal when asking my partner if he had anything to say as soon as he said two words the judge was rude to him! (it didn' help my union rep who came with me was meek and barely uttered two words which annoyed me)

my partner and i have written all about it to our local m.p and are going to see him in one of his clinics the end of sept, also we have a few other things going on( my contributory esa should have stopped 1st sept and they are meant to write to you 6-8 weeks before to let you know and to inform you what to do next, i have recieved no such letter and yesterday wrote and told the dwp so !!

i was distraught but now i feel so mad i could crush a grape!!!!

god helen,if you don't laugh you would cry,honestly

love ej


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