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
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
These will form the basis for discussion on the day. 
on the way home. Might get there by midnight. . .my BOTTOM!!!!