Health Organization for Pudendal Education

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Professor Thomas Carlstedt is actually an orthopaedic surgeon, he is the surgeon working with Dr Baranowski doing PN work in London.

I know that there was someone on here who went to see him first, Dr Carlstedt saw him and said that the person needed to see Dr Baronowski. So if your GP is prepared to refer you to see an orthopaedic surgeon on the NHS, then you could ask to see Dr Carlstedt? Then you'd have support from a consultant saying that it is PN.

I don't know if this is going to be of any help to you, but just a thought anyway.

Ooops just seen the second part of your post, I should have scrolled down on my laptop, sorry!

I don't know if that is the right Dr Patel. But I do know that spikehades went to see Dr Wong - thread here - and mentioned that Dr Patel was a neurosurgeon. So it might well be the right person, as this Dr Patel is a neurosurgeon. But this doesn't really solve your problem, as your GP says he will only refer you to an orthopaedic surgeon, and Dr Patel is not one.

Why not go to Dr Carlstedt though, and go thru the NHS? Then you won't have the problem of travelling, and you won't have to pay. I don't know what the waiting list is like, but you will find out when you call to book, if you choose to go that route.

Why don't you phone Dr Greenslade's secretary and explain the situation. I'm not really sure why you need a GP referral if you pay privately for a consultation as you can always let them know of your treatments to date. I know it is standard protocol but the GP letter is often only a couple of lines long.

Kath, I have phoned Dr Greenslades secretary, who said I needed a GP referral.
I have already experienced long delays with an NHS consultation/results and think it's unlikely that my GP would be prepared to refer me in the knowledge that a request for exceptional consideration, ie extra cost, would be involved. I formed the impression that he thought it was not for me to diagnose or suggest what may be wrong with me.
It's all quite distressing.

So sorry to hear about your referal battles. My GP is dreadful too , but that doesn't help you . . . Will you be able to get a referal to Dr Baranowski? A lot of people do go to him and he does have a lot of PN expertise (been at it longer than the Bristol team, but that's the extent of my knowledge)
I would print the HOPE letter to medical profession out and give it to your GP (mine simlpy glanced at it and shoved it in my file however) Tell him you have HAD to diagnose yourself as there hasn't been a lot of help elsewhere and you continue to suffer.
You could also try PALS. http://www.pals.nhs.uk/cmsContentView.aspx?ItemID=938

Plans for the introduction of PALS were first announced in the government’s “NHS Plan” of 2000, which said:

“Patients are the most important people in the health service. It doesn’t always appear that way. Too many patients feel talked at, rather than listened to. This has to change. NHS care has to be shaped around the convenience and concerns of patients. To bring this about, patients must have more say in their own treatment and more influence over the way the NHS works. The reforms outlined here give patients new rights and new roles within the health service.”

“When patients are concerned that the NHS is not delivering for them they should get their concerns addressed. . . Patients need an identifiable person they can turn to if they have a problem or need information while they are using hospital and other NHS services. . . PALS will act as an independent facilitator to handle patient and family concerns, with direct access to the chief executive and the power to negotiate immediate solutions”.

PALS were introduced across England in 2002, following the evaluation of some pilot programmes the previous year. They are now helping thousands of people every day with information, support and advice. Noel Ward tells of his experience of the service.

I hope you do get things sorted out and soon. We all know how difficult this is to deal with without added dificulties GOOD LUCK.
Take care
Helen



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Had another thought - could you see a different GP at your surgery? They may be more receptive and take the letter Helen suggests. I took the article to my gastroenterologist who did listen to me and that helped me with my GP when a consultant had considered it.

Seriously - if your GP will only refer you to an orthopaedic surgeon, then ask him if you could please be referred to Dr Carlstedt. He is a PN specialist in London, and his background is that he is an orthopaedic surgeon.

I have remembered who it was that went this route, it was johnd.h - I believe he paid privately for his first appointment but subsequent treatment has been through the NHS.

Good call Calluna,
I remember how nice John said the Prof was, hope you are feeling a bit more positive about all this Gentle_artist.
Helen

Hi ther Gentle artist

It angers me when I read stories like yours, so many times. My GP was reluctant at first when I mentioned PN to him and wanted me to have a lumber spine scan, which I did to humour him and nothing showed up. I've been seeing him on and off for rectal pain for some years. So then I went in with some info on Dr Greenslade and his contact details and he got me an appointment on the NHS. I waited about 6 weeks, but if my GP can do it I don't see why yours can't. My GP said he didn't know where to send me, so I found out myself. I was releaved when Dr G told me I had PN (that sounds weird, I know) but somehow you feel much more able to cope when you now what you've got.

Good luck with your quest and don't give up. If you keep going back and making a nusence of yourself (even if you are repeating the same things to them) they will have to give in the end to get rid of you! Persistance pays!

Cheers
Peaches