I was overwhelmed to say the least. I didn't 'know' anyone apart from Dr Greenslade, who was at a separate table to me, Judy Birch who I had passed in a corridor once and introduced myself to and another fellow pelvic pain sufferer (possibly tarlov cyst cause) Jacquie who I 'know' through facebook and pelvicpain.org.uk that Judy runs.
Judy is the person who was instrumental in getting this workshop up and running as she has championed pelvic pain sufferers, being one herself. She gives talks from the patients perspective and attends any pelvic pain 'get together' going, worldwide. Obviously this networking has paid dividends which will benefit everyone in the UK hopefully. Oh there were a couple of Italian Dr's there too (I will endeavour to find out more) but they left before the end. There were around 40 people in all. The focus of this workshop was to introduce a good working diagnostic plan for all pelvic pain sufferers in the NHS, as it has at last been recognised that the numbers here are as high as in the asthma and back pain group. I know that many of the back pain group will be pelvic pain people in reality (I'm one
as is/was Fiona, another patient representative there who has recently had successful PN surgery in Nantes) so 'our' numbers may even outstrip the others in actuality. Once the back pain people would just stop trying to lay claim to me for their own, I would be a happier person altogether.
Nothing got finalised on the day but there was some very useful discussion and agreement over the overall objectives and much of the initial draft for the proposals. There is to be another day organised, this time with some commissioners (money men) present too.
There was a slight slant was towards endometriosis in general on the day, as a revealing study by gynaecologist Professor Khalid Khan (Barts) who also gave a talk, showed many laparoscopic surgeries for that problem were of little use. One woman it was reported had had 16 laparoscopies
and was no better (a private patient however) although there seems to be an unnecessary prevalence for multiple surgeries on the NHS too. Hopefully these multiple, almost routine (without much thought or good outcome) procedures will be halted with these new proposals. NHS Money and time saved here could then be of benefit to the rest of us.It was agreed that there needs to be more understanding of these problems nationally and more multidisciplinary centres set up for pelvic pain in the UK.
Obviously we do share the platform with every other chronic pelvic pain (CPP) complaint, which they did differentiate from chronic pelvic pain syndrome (CPPS) which is regarded as 'pain as the disease' and has no proven or obvious pathology. CPPS requires cognitive therapies while CPP has actual physical findings, which can benefit from cognitive treatments too but also requires separate targeted treatments in each case.
They did keep going on about CPP pathologies being easily identified which I took exception to. As most of us know it has been far from easy identifying pelvic nerve issues and getting PN or any pelvic nerve problem diagnosed. Maybe the rest of pelvic pain problems are easily identified (I don't know enough about them) but not ours! I definitely know that.
I didn't voice this strongly enough
but will certainly have more to say about this at the next meeting (if invited). The thing that I was bowled over by was actual patient 'engagement' as they termed it, it is seen as a very necessary part of the process and focus of the NHS in general. I'm sure that a lot of this has to do with the fact that many chronic pelvic pain patients (a third of them I think) will land in the CPPS bracket and the only way treatment can be effective for them is a combined effort of taking on board cognitive therapies offered and patient education about central sensitisation and 'pain as a disease'. The problem for us being that too many of us have landed there anyway by default, due to a lack of PN knowledge and enough PN aware clinicians who are able to properly clinically test and diagnose problems like ours. I wonder how much of the figure of 1/3rd in the CPPS group is due to misdiagnosis from ignorance of pelvic nerves as a pathology ??
I should write this down this all down for next time
I will be more brave then.They really were taking the patient engagement seriously though, one other gynaecologist, Jaquies doctor did say that he had learned so much from her!!! (unfortunately she had gone by then) I was amazed that some of these highly regarded people actually were taking the patient seriously and not just paying lip service to 'patient engagement'. This has not been my own experience, as some here may know, so it was very heartening.
I talked to Dr Greenslade afterwards to get the low down on what was happening with the proposals in Bristol. He said that he had every reason to feel that they would get a green light and probably very soon as the response had been very favourable and he did not see any forthcoming problems.
So all round it was a great day, with encouraging proposals, enthusiastic but realistic people who really do realise that this all need addressing asap. I doubt we could ask for much more and there will be better still to come I'm sure.
I'm knackered
Helen
