Issues again with surgery by the NHS at Bristol

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.

Re: Issues again with surgery by the NHS at Bristol

Postby helenlegs 11 » Wed Feb 13, 2013 7:25 pm

The pelvic pain workshop was unbelievable. There were 5 pelvic pain patients there, as well as a whole host of clinicians including a lady who works along side Dr's Curren and Baranowski in London, quite a few GP's,physiotherapists, gynaecologists, pain specialists, Dr Greenslade (Bristol) and Dr John Hughes (Middlesbrough) who is co-author of the Guide for Chronic pelvic Pain. The 'host' and man in charge, was Professor Muir Grey who is also a Sir after being knighted for his work with the inception and ultimate success of the NHS breast screening programme, which reaches so many UK women. He was classed as NHS Chief Knowledge Officer on the programme.

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 :o 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 :oops: 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. :D
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
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.
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Re: Issues again with surgery by the NHS at Bristol

Postby calluna » Thu Feb 14, 2013 11:17 am

Thankyou Helen for posting this! I am now going to re-read it all but it does sound very positive. And the workshop in general sounds fascinating and very informative. Could I ask how you came to be invited? I'm very glad that you were, I can't think of anyone better. :)

You mention the Guide for Chronic Pelvic Pain - is this it? I think I need to go and read it, carefully and thoroughly. And possibly print it out for the OT when I get to see him/her.

Thankyou again. :)
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Re: Issues again with surgery by the NHS at Bristol

Postby molly » Thu Feb 14, 2013 12:30 pm

Yes well done Helen,

It does sound a long an exhausting day, but well worth it. I think all the UK patients will bd encouraged by these positive noises lets hope so.

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Re: Issues again with surgery by the NHS at Bristol

Postby calluna » Thu Feb 14, 2013 1:17 pm

It has just occurred to me - the reason that these doctors are at the forefront of their profession is that they listen to their patients - it all leads on from there. Achieving better outcomes for the patients means doctors who are recognised as being better than the rest, and vice versa. Communication is so important, and that means listening as well as talking. :)
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Re: Issues again with surgery by the NHS at Bristol

Postby helenlegs 11 » Thu Feb 14, 2013 2:07 pm

:D Yes that is the guide Calluna. I think it is very well written, especially as it gives my condition credence. Just a shame I hadn't found it before my Tribunal battles.
Chapter 6 is 'our bit'.
When looking for help,the first forum I ever found for pelvic pain was pelvicpain.org.uk which is the site founded by Judy Birch and another girl (sorry forget her name) I posted there first.
It isn't very active for nerve pain I found and any information I was after didn't seem to be easily forthcoming. I'd heard about 'The Bristol Team' from there but couldn't get to find out who they actually were, so did my own enquiries and found Dr Greenslade. All the while I updated my story on there and 'met' a few other PN'ers but then found HOPE.
Judy's site then teamed up with Health Unlocked (excellent resource for all sorts of medical problems) and she asked me if I would contribute to that as a volunteer with blogs or whatever, I said no at first as I thought it might be an 'Oh poor me' detail which I don't do (much ;)) but there are a few things I wanted to get off my chest so did contribute in the end.
So really it was from that. . . . she had asked if I could attend something once before and I was unable to for some reason but I said I would be happy to help if I could with any other project. Luckily this one is really major it seems.
The patients were split up onto different tables and because of this I think we were too quiet, think we would have chivvied each other on if together, so maybe I wasn't the best choice :oops:. Will do better next time. . . . .. Although one girl representing the vulvodynia (ians??) did pipe up. She is desperately after a research project about how many people suffer with this particular complaint. Apparently the society she is a member of have quite a healthy bank balance but are not so keen on this project??
We went for a cup of tea afterwards, 4 volunteers and professor Khan (one of the spokespeople) came too (he is so normal! and nice) he was talking about grants and where the money is for research. There is plenty it seems, if you know where to go and who to ask. I didn't make a note of who, what and where but once one thing is granted there is up to £200,000 available from another source for instance, he didn't seem to think funding her idea would be that problematic :shock:
To be perfectly honest I would rather see research money targeted to helping people with a problem than just finding out how many there were exactly. (I'm sure she would too, although she feels this is where to start probably)
This NHS push for pelvic pain already recognises that the pelvic pain community is huge (and costly for the country of course ) and therefore needs addressing; At LAST!!!! This is the paper that has set things off or at least contributed.
Just read your last comment Calluna. You are SO right AND I think that's why I was so 'gob smacked', hate that expression but apt on this occasion. I'm just SO unused to them taking a blind bit of notice :)
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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.
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Re: Issues again with surgery by the NHS at Bristol

Postby Painful Man » Sat Feb 16, 2013 10:23 pm

Yes, thank you and well done Helen! An amazing amount of info and insight (and energy, I'm sure). It's good that these things are happening and awareness is building. Glad to hear Dr G is feeling positive. I shall wait and see what happens.

Thank you ALL for comments and contributions since I last posted. Andrea and Alan, I don't know which surgeon I will see. I didn't think to ask. At the moment I am just beginning to contemplate the option of surgery. It has been put to me as the next step, but I really haven't read up on it enough yet. I can avoid great pain by (apart from the pregabilin I'm on) stopping sitting and doing a chore or lying down or walking. However, the condition is constant and I cannot lead a remotely normal life. Socialising (with sitting) or travelling completely does me in. I still work PT, but that also does me in. So I as I find that I am recommended surgery, then I suppose I really am taking it seriously as I need to free myself from this awful thing.

Comfortable sitting to all
P_M
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Re: Issues again with surgery by the NHS at Bristol

Postby chillijava » Sun Feb 17, 2013 1:23 pm

hi painful man
i also think surgery is going to be my next step also, as dr greenslade and mr dixon have both mentioned it. at my recent nerve block dr g did say i had the choice of 2 surgeons in bristol, mr dixon and mr wong, will keep you posted and let us know also how you go on, when is your next appoinment

andrea
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