Health Organization for Pudendal Education

Hello Hope men and in particular British Hope men,

There is to be a follow up workshop to establish recognition and treatment pathways of pelvic pain in the NHS on the 10th May in Southampton (Parkway)
This is a massive breakthrough for pelvic pain sufferers in general who are mainly women but of course it will include all pelvic neurological pain which is where you can hopefully help me and therefore the rest of us.
Judy Birch who runs pelvicpain.org.uk is the patient representative organizer for this and the last (excellent) event.
She mentioned that we have no male representation, which is unfortunate and doesn't show the full picture at all.
Last time there were 7 patient representatives (if I remember correctly) all ladies. It was great that we were from different background diagnostically, with a good range of age difference which allowed the many medics there to see that pelvic pain affects all sorts of women but of course it affects all sorts of men too, doesn't it!
We would love to have a male patient representative attend the workshop although I realise that it is rather short notice.
If anyone is interested Judy is hoping that patient representatives will say a few words for about 3 mins each, telling their pelvic pain story or any other appropriate tale. . . . . . didn't tell her I needed MUCH more time than that .
The 'audience' (it's very informal and low key and this time in a sports hall I think) will include Sir Muir Grey (lovely man) who sort of 'hosts' it, physio's, interested GP's, pain consultants and other doctors but also some NHS commissioners this time too, so the money men.
The whole structure of the NHS involvement, pathways, treatment etc will be formed at or from this meeting.
If you would like to be part of this please let me know. IF you can attend FANTASTIC! but as an alternative if anyone could write their own story down, I would read it out.
They are so interested in the patient point of view, I know it's so hard to believe (or is that just cynical old me?) but highlighting any problems we have faced will help them get it right now.
PM me. . . . . . . please, please, please

Helen

I have just received an e mail about the event (map and stuff) THIS was attached

Dear all,

Please see attached Map for the venue and Agenda for the day along with a draft Template of how our health system should work best to help women with pelvic pain. These will form the basis for discussion on the day.

Please contact me if you have any further queries.

The Right Care team and the local organisers to look forward to seeing you on what will be a productive day.

I mean I'm all for helping women with pelvic pain BUT! come on guys, put down those handbags and get gruff!
Helen

thank you so muvh for the interedt shown. i will vontact uou later as travelling snd cant acesd helen account
i have been told tjst thru are focussing on womrn which i think is a midtske but tjrte you have it! althougj this is judt for this particular event . still dont agree.
so no men needef!
sorry for major typos on phone.

You're a Star Helen - hope the meeting goes well tomorrow.

Rosemary x

Yes well done Helen for going tomorrow. Hope your day isn,t too uncomfortable, looking forward to hearing what is discussed.

Molly

If anyone made ANY sense of my post above . . . shakes head . . . .there is something seriously wrong with you and it's not just PN My excuse is I was on the bus!!! PUBLIC TRANSPORT!! as I had been asked to try and keep the cost of travel to Southampton down. . . .Don't get me wrong here, it was only the bus for 3 miles
I have had a nightmare journey both ways. . . .. Someone decided to throw themselves under a previous train out of York station leaving us stuck in the station for almost 2 hours. Poor train driver how do they cope.
I have had a couple of mistaken ventures going and another delay with additional costs on the way home. Might get there by midnight. . .my BOTTOM!!!!
My puppy has missed me so much she won't eat and my grandaughter cried that much as I left her, her mum had to buy her ice cream AND take her to a cafe for a treat, she's 2 AAAAWww!
Will update soon.
We had two lovely men from this forum offer their services ABSOLUTE STARS!!! Apparently they have been trying to get a male patient representative for YEARS and then when we had two they said, oh well maybe next time! I did brag that at least I was still able to get the men
Helen .

I am on my way home from the pelvic pain workshop. The map of medicine for pelvic pain is up and running
This one for primary care http://directaccess.mapofmedicine.com/e ... pain1.html They have links to other maps but I think the neurological map should be included too.
This for secondary care which is more appropriate to neurological conditions and most of us.
http://directaccess.mapofmedicine.com/e ... pain2.html
Click on the i for drop down information.
. So we should have no difficulty in England now ha ha ha. . . Obviously GP's and the like have to help implement it but at least it is there to be viewed and brandished in front of any GP falling short of their map of medicine pelvic pain stylee' duties.
I had posted some muddle about men not being required and eventually got an explanation why this should be. The main patient pain representative was worried that the split for funding would go 50/50 for men and women and as there are more women pelvic pain sufferers than men she didn't think that would be fair. I disagreed and wasn't the only one, this division just shouldn't be made full stop and anyway one of the funding commissioners really didn't think that this gender fund division would happen, so we all agreed to put men back in. That was one of the first things done.
Obviously the clever people have been working on the map of medicine and beavering away in the background post London workshop so the main focus of this workshop was how to go about securing whatever structure and types of service could be available, how this would be presented and ultimately rolled out within the NHS.
The types of things they were discussing here were way beyond me as these people are those who will be actually accountable and responsible for how, where and how much, so they were interested in it from a different perspective and needed to make sure that, as the buck did stop with them, what was being proposed was actually possible.
It became so obvious that the pelvic pain patient had been badly let down thus far there was no whinging about the need for such developments.
I gave a little synopsis of my story to the assembled group. I'd been told that I would have to keep it short but then no one else turned up but me (and Judy) and two other random ladies from a local patient pain group who didn't speak.
Lots of great things were discussed and formulated. They are still going for some population based 'network' or more local centres for pelvic pain that will probably be attached to other generalised chronic pain problems, migraine etc.
My 'presentation' from a patient point of view obviously came from the neurological aspect, which no one touched on last time, it was all Endometriosis and laparoscopies so I was glad to be asked I talked about the lack of recognition for neuro pain and inability to get a correct diagnosis and therefore targeted treatment.
Dr Greenslade followed me and thankfully gave a great presentation using one of his male patients as an example. This chap had lost his income, almost his home and marriage so he touched on points that I hadn't. He said that if he had been asked to deliver something at an earlier date it would have been totally different but he has realised these resultant, ever spiraling effects, especially when dealing with pelvic pain. He also mentioned that patients get bounced around the health system ending up with many wrong diagnoses.
The rest of it was dealing with how they would hope to roll the service out and where the super-service centres may be located. Bristol may have a spot, and should ! but also Middlesbrough, Hull, Lothian, London and a few other places dotted around the country ( sorry I forget and I don't want to give you wrong info) basically it has been interested area health representatives who have made a difference at these meetings so far.
There was also a call for research mainly with regard to how many and how effective the many laparoscopic procedures are to the degree that Muir (as I call him now ) no, Professor Sir Muir Grey said that anyone having a laparoscopic procedure would be asked to take part in a accountable survey, as this had proved effective with seeing how necessary NHS hip replacements had been.
They know that a fortune can be saved ceasing laparoscopy after laparoscopy that have made little or no difference and can plow it into this proposed better pelvic pain service.
The other interesting fact was how much interest Muir took in the patient support groups, including forums. He asked the two local pain group ladies what they did, how they were funded, where they met. He recognised the worth of such groups and thought there was no reason why they couldn't meet in a room in their local hospital or similar, free of charge instead of hiring somewhere which they had been doing. If anyone belong to such a group it is worth asking about. One GP who had been responsible for some of the map of medicine said she would come and give them a talk about 'how to get the most out of your GP' I SO need that talk!
Sorry so long and of course still 'a work in progress'

Helen

Excellent Helen!!! This sounds very promising and I hope they can follow through with all the areas of implementation. You should be commended for fighting for everything and not letting the men get short changed. Also the awful traveling problems you are a trooper. Take care and get some much needed rest.
Janet

helenlegs 11 wrote:If anyone made ANY sense of my post above . . . shakes head . . . .there is something seriously wrong with you .

oh dear i made sense of it

A super centre in Bristol - with Dr Greenslade there would be great.

Hope you are having a good weekend after your long journey.

Rosemary x

This sound all very promising Helen, lets hope this is implemented soon so more people can get to the right doctors without having loafs of unnecessary procedures and appointments that has been the case up until now.

Hope you have recovered fro your very long day.

Regards Molly