Health Organization for Pudendal Education

Some of you may already know about my attempts to apply for an industrial injuries (II) benefit (might be a bit like workers comp?) as I fell over at work and ended up. . . here
Actually the applying bit was a doddle, yes it is an industrial injury, yes, you will receive £17 per week $27, yes, easy!
At that time I had been told that my pelvic 'soft tissue injury' would be all better within a year so the fact that I had this II award for a year was fair, maybe not financially but I didn't have any time scale issue at all.
Then it all got interesting, as of course I didn't get any better.I had another medical when my payments were stopped as I now had a physio's report that I had piriformis syndrome, PS. Yes, come along,touch toes, yes, the Dr will understand about the problem. . . ER! NO! he did not! so I got no where. Appealed, nothing. Appealed again and was allocated a tribunal spot to 'put my case'. It was adjourned because of their admin error and allocated again for September just gone (over 3 years since my first application) This time I had a PS and PN diagnosis however, it would be straight forward, so I went on my own, confident that all of the material I had supplied would make the tribunals decision a forgone conclusion.

The tribunal consisted of a 'judge' and a Dr. and was horrendous. I was correct in that the decision was a forgone conclusion, but it was more like, this woman is obviously a time wasting, deceitful, duplicitous,fraudster. Pundendal neuralgia, never heard of it! Piri what? They called my Dr's quacks and mentioned a long jail sentence and made me cry
Hell! if I was going to make it all up I probably would have thought of something I had heard about before, rather than my bum's sore! ~shakes head~
If I've bored those who know the story so far I apologise, and apologies to the rest, because there is more to come.
Almost 2 hours later the whole thing was adjourned (again) as the tribunal decided to ask the Secretary of State for help. Now the government is involved. . .it's only me for goodness sake!! I couldn't believe the whole thing had gone so bonkers! but anyway the S of S delegated the task to some Dr. in Leeds called Leris.
I have been sent a copy of her findings, she was tasked to research a) the accepted and recognised cause of PN and PS. b)nature and effect and, c) treatment of these conditions and, d) experts in this field.
Through her research she has managed to establish that. . . .drum roll. . . .PN and PS DO EXIST!!!. . . .*~fireworks~*@~* Because of the Nantes criteria and a paper by Dr Hibner the diagnosis of PN is not controversial, she was even happy to state that PN can be caused by trauma. However, 'foreign' material didn't seem to cut it with her regarding PS so she asked a spinal surgeon who has never seen PS or PN. HHHmmmm could that be because he is a spinal surgeon, there was a clue wasn't there. . .
He informed her that his understanding of PS is that it can only occur spontaneously and 'CAN NOT BE CAUSED BY TRAUMA'.
It's actually difficult to find anything on PS that doesn't mention 'can be caused by trauma'; There are whole case studies on 'post traumatic PS' where 10 out of the 14 cases had a simple fall on their bum's. American though. . . foreign, no good! and neither of her other 'experts' are names we know.
I am deeply ashamed that our NHS and social services systems still think they are the only ones in the world who have any answers. This green and pleasant land. . . .Land of hope and glory (Yes I did go to Proms night at my Dad's local church, have to, he organises it) It would be if we weren't so insular and up our own!
But if anyone needs to prove that PN exists to their Dr or specialist the British government have decided that it does .
Ding, Ding round 4. . . .

Helen,

This sounds like it would be really good news for you, even though it is ridiculous that they did not look into it before you were brought into the tribunal, whatever that was, that you have had to wait so long for, only to be rejected. Could you explain what this "research" that the doctor who was assigned to look into your case means as far as your own treatment? Will you finally get to see one of the PN specialists in England under the National Health? I do hope so!

Unfortunately her 'research' was only for this tribunal as they would not believe me, that PN or PS existed atc, etc. At least that is proved now and will kind of be 'legal'. Nice of her to allow me to have the thing I have been suffering from for over 3 years. I know that sounds stupid, but at least if anyone in Britain is struggling to get any recognition for our problems, as many have, this whole nonsense will have an outcome that could help.
I have seen Dr Greenslade who has to referred me for surgery. I now have to convince my local health authority to agree to the referral. . . nothing is easy is it ! Onward and upward. . . I think I need a placard to brandish

Hello Helen.
I really wantedto reply to your post the moment I saw it, which seems an age ago...what stopped me was this ongoing problem of one thing or another on the computor, then thinking I had solved all the keyboard was shy of producing the letter e and d and a so there wasn't many words I could produce without these that made any sense at all...the worst bit was haveing a com problem also my Geek squad was unable to help as they take over the computor to fix things without it leaving the house, getting into the website for then to take control was a no no as the word Geek held two e's so waited till a new keyboard could come my way,,,tis here now and the only thing to stop me would be my morning disaster where I can not do a thing for the first few hours ...I certainly need an explanation for that...however onto the topic. and I want to be the person or hopefully one of many hundreds of members who have thanked you sincerly for putting yourself into this horendouse, forgone conclusion, unfair tribunal. Yes a really big THANK YOU as you have paved a way, brought attention, stood alone facing a panel to whom you had expereience of an unfriendly, unwilling to change or to give any thought to your plea/ evidence/names of Doctors..and stood humiliated and not for the first time...I don't believe, knowing you as I do, that you took all this crap for just your benefit (sorry am I allowed to say that word?) apologies but I have some very strong words to mind, What a shame we can't award a pioneers trophy of the year/lifetime....I know you will shrug this off, and come up with an excuse eliminating yourself for the "award" because that is you...Truly a big thank you on behalf of all that in years to come will benefit from your stand on this, perhaps even helping a lot of sufferers now. Well done, now take some time to be good to yourself knowing you deserve it.
lots of love
little mo
xx

Wow, Helen! It reads like a good novel. You are the heroine of course.

Keep up the fight -- I have a feeling you will continue to win.

Hugs,

Violet

Thanks little mo and Violet. I can't imagine that I won't win. . .if there is any justice, but then my luck has been on a downward spiral for a while, rather than a downward slope
I have now put in an official complaint about mt GP too. It sounds like I am just someone who likes to stir things up,a serial complainer but that's far from the truth. I simply can't bear injustice and your right little mo it's not really about me any more.
The worst bit is all the waiting I want them all to know NOW! But patience is a virtue . . . . . . see that counts me out already!