Issues again with surgery by the NHS at Bristol

[Painful Man]

Dear All

It looks like I need surgery. Well, it's good to know where I am at least. However, I think I understand that there is a problem with 'recognition' of our condition. This means that the NHS will not carry out the surgery, at least not until they decide to recognise the condition.

I wonder does anybody know more on this issue? There is the private stump-up-yourself route, but is not the NHS/PCT position just a tiny bit unreasonable?

All the best
P_M (now starting a fourth year of life with PNE)

[molly]

Hi painfulman,

I am seeing Dr Greenslade in a couple of weeks so if you don,t ger an answer by then Ishall ask him.

Yes Iagree that it is outrageous that this condition is not properly recognised in the twenty first century. Whilst I would never wish this ghastly condition on anybody, perhaps if some of the gods who make up pct,s were to experience it they may have a rapid change of mind.

Regards Molly

[chillijava]

is there any way you could fund it yourself, if you had it done at the spire bristol, i think they do a self pay package which means you could possibly pay monthly, i know some hospitals do this like the bmi hostpitals so maybe worth asking, if it was at all a possiblilty.
i know its not an option for some people but worth looking into


andrea

[helenlegs 11]

What has Dr Greenslade said about this Painful man? My understanding was that Bristol had to 'put the case for surgery', some time ago and from that a decision FOR or AGAINST (of course) should have been made around now (this was all hearsay btw, but did make sense as far as the NHS is concerned)
I did wonder if we'd had an answer back yet.
Dr De Mello can't
Dr Baranowski won't (it seems)
That only leaves the Bristol team, so if their answer has been no, that does leave us up that stream, minus the paddles. People have had an op for PN on the NHS however at Bristol but I am not aware of the current situation. we will have to wait and hopeful get this clarified.
Helen

[calluna]

Last we heard about this was June 2012. What we heard was that it wasn't about funding but rather that the surgery had to be submitted to the new procedures panel at Frenchay. It was supposed to take about 12 months to get this passed by the panel but at that point the managers responsible had not yet submitted it....

I saw Dr G earlier this week, should have asked him what was happening, shouldn't I....

[Painful Man]

Thank you all for your kind comments. I’ve been referred to the surgeon, who I suppose will recommend a particular type of surgery to me. However, then, as Dr G warned, I will have reiterated to me that the situation regarding surgery under the NHS is still, I think, as Helen and Calluna have helpfully clarified.

I feel strongly that the NHS must recognize PNE and help those that suffer with it. I’ve held out this long, so I’ll wait and see what the surgeon has to say, and take it from there… Any news or up-dates from anyone will be very welcome. Hopefully there will be some progress and improvement in the current situation.

All the best
P_M

[chillijava]

which surgeon are you seeing


andrea

[helenlegs 11]

I am going to a pelvic pain workshop tomorrow and have been told that Dr Greenslade will be there so I try and find out what the state of play in Bristol is.
I will be one of 4 (I think) 'pelvic pain patient representatives' who will try and get some of the points you have raised here clarified.
It states in the Guide for Chronic Pelvic Pain (chapter 6) that surgery 'probably should' be offered (which is a little obtuse??).

6.5.2 Pudendal neuralgia and surgery
Decompression of an entrapped or injured nerve is a routine approach and probably should apply to the
pudendal nerve as it applies to all other nerves. There are several approaches and the approach of choice
probably depends upon the nature of the pathology. The most traditional approach is the transgluteal
approach; however, a transperineal approach may be an alternative, particularly if the nerve damage is thought
to be related to previous pelvic surgery (11,14,33,35,46-48).
Currently, there has been only one prospective randomised study (11). This suggests that, if the patient has
had the pain for < 6 years, 66% of patients will see some improvement with surgery (compared to 40% if
the pain has been present for > 6 years). Surgery is by no means the answer for all patients. On talking to
patients that have undergone surgery, providing the diagnosis was clear-cut, most patients are grateful to have
undergone surgery but many still have symptoms that need management.
Dr Thomas co-author of the above (Middlesbrough, pain management) is presenting part of the programme so I will endeavour to get his views on this too.

PN patients in the UK should at least be given the option of surgery if it has been recommended after all other treatments have failed.
I will let everyone know what happens. Really looking forward to it, although will have to be up at 4am
Night all
Helen

[molly]

Good luck Helen,


I hope you have an informative day and comfortable one. Look forward to hearing what the latest UK position is.

Love Molly

[Alan1646]

Like you, I've had PN for some years. I have thought carefully about surgery but until recently have not been interested because it seems such a gamble. I don't have bad pain all the time, so in that respect I know I'm luckier than some sufferers. I've been in touch with a few people/ read posts of those for whom surgery worsened their condition and I think it's that risk that puts me off the most.
Do you have pain all the time, or is it the restrictions of the condition that propel you towards surgery?