NEED MEN! British men with PN.

[calluna]

JUst wanted to say well done Helen, I still cannot imagine how you managed that journey! I do hope you are ok and that you have some good pain relief running.

I am going to try and register so that I can access that site and follow your links now, it seems think it is for professionals only so I am going to pretend, I wonder how far I will get....!

[Painful Man]

Well done Helen, and thank you from the Males. You were very brave to put yourself through all that travelling, and then a long meeting which of course will have required lots of sitting! It does look like a message is getting through, and that there is some progress at last.
All the best
P_M

[Roger]

Ok so having been around the NHS depts non stop from about this May.

Finally my Dr thinks I have this.

How do I now get him to now send me to the right specialist having been fobbed off by a Urologist at the BMI Hospital Bedford (sent there on the NHS as I do not have medical insurance) only just last week.

I'm in Milton Keynes.

Going back to my GP next week to discuss getting me to see the right person this time. So any help on this would be very very useful?

Thanks

[calluna]

I just came straight out and asked. I said to my GP that I had discovered there was a consultant with a particular interest in PN, and please could I go and see him. Well, actually, that there was more than one, but I'd like to see the closest one, please.

My GP thought it was an excellent idea, he had no idea that there was any such specialist, and said that at the very least we should be able to get the diagnosis confirmed and also perhaps some helpful ideas as to how to manage the condition. He sorted out the referral online straightaway and sent me off with one of those forms with the telephone number to ring, and a password to give.

So within 30 minutes of seeing my GP, I had an appointment booked to see Dr Greenslade in 10 weeks time. I've had all my treatment on the NHS by the way, they have looked after me very well.

[Roger]

Thank you.

Got the list now from here which I will take to him this week. Fingers crossed

[calluna]

Looking at the list of UK doctors on here, I should just mention - not sure what's happening with Prof Carlstedt, there was some talk a year or so ago of him retiring, and recently we haven't heard of anyone seeing him at all. But you wouldn't see him first anyway, he was a surgeon not a diagnostician. So in London it would be Dr Baranowski or Dr Curran to contact. In Manchester there is Dr de Mello, and in Bristol the person to contact is Dr Greenslade. Mr Wong and Mr Patel work with Dr Greenslade, as does Mr Dixon who is not listed there (he is my surgeon) but they would not be your first contact. So that's just four to choose from, not a lot really. But we have good reports from all of them.

Seeing Dr Greenslade was out of area for me, but it was no problem at all. I think this can be down to the individual GP, some people have had a lot of difficulties getting a referral out of area.

Anyway I hope it goes well!

[Roger]

Thanks Calluna,

Unfortunately the ability to do it on line wasn't there. As as result I had to contact Dr B's dept as my Dr didn't have time! So that I could tell him to do do a written referral.

Farcical really! I thought the NHS was getting better.

To think back in April when I first started getting weird symptoms suddenly, that when I saw the GP he just laughed at me and sent me away!
And now 8 months later I have to almost spoon feed the GP with the info to refer me to a specialist!
I even took him a copy of the NICE protocols on how to diagnose chronic pelvic pain!

It really is crap, but I've paid in to it so I'm entitled.

[calluna]

Sounds to me as if you need a different GP.

I know I'm lucky, mine has been nothing but supportive and helpful all the way through. He takes the attitude that he is happy to have an informed patient, and is quite ok with me doing a bit of research myself. But equally he is happy to go and do some finding out himself if need be - although he is very knowledgeable already. We discuss things, and come to decisions about what to do next. I think this is how it ought to be.

[Roger]

I think you are right. But the nearest surgery has closed suddenly and my current one which was better than the other had a 2000 patient increase over night because they had no where else to go. So now we all suffer..........in and out in 5 minutes. Cattle get better treatment.

[Rosemary]

Hi Roger

just re doctors - one thing i learned from another forum is to book Double appointments with the doctor so that you get longer with them. Something i would never of thought of doing before.

Rosemary