Health Organization for Pudendal Education

Apologies. I think I rather cut across the main theme of the post-op postings with my rant. I meant to respond more fully to Shirley’s query below, but my ire and frustration carried me away. So:

Hi Everyone, I am about to undergo the surgery route at Bristol. I have had this two years and diagnosed myself after six specialists couldn't figure it out. It has been diagnosed now and I am trying to get funding. Has anyone of you British got funding?

I have the impression that it is hard to find out the position with regard to treatment for PNE under the NHS in England (Scotland et al may be different, I don’t know). This is my experience. So far all tests at my local hospital and diagnostic procedures in Bristol have been under the NHS. I have always resisted trying to speed up the process by requesting private appointments because of my belief that the NHS must take responsibility for this condition.

After I informed myself about the Bristol clinic I asked my GP if he would refer me there, that is to say to a hospital outside my area. He did so without objection. All the waits were long, but I eventually got through the diagnostic stage. I have seen the surgeon and he recommended surgery to my GP. This is what happens now:

I am not resident in the Bristol area. So my own area ‘health authority’ (they keep changing the names) must agree to ‘pay’ for the operation. My GP makes an Individual Patient Treatment request to a Panel Meeting (consisting of ‘Commissioners’ etc). The Panel decides. If they reject, appeal is possible. I am waiting.

I believe there are other people who have had all their treatment and surgery under the NHS. I don’t know how many people have used insurance or, not being able to bear the wait any longer, simply paid themselves. It would be useful to know more about what costs might be involved (Andrea, thanks on that one). Having said that, I still maintain that because of the new area of expertise that treatment for this condition is, and the open-ended nature of one’s post-op progress, the NHS must take it on.

Best wishes
P_M

hi pm
i still havent had all my bills in yet but i think it is going to be somewhere in the 1.5 to 2k area, that includes all pre op blood tests, urine testing and ecg at my pre op assessment the night before my proccedure, mr dixons fee and dr greenslades fee as my aneathstist (sorry about the spelling) and all my hospital fees for an overnight stay including theatre fees, drug fees and room fees, i think that covers it all, but i will confirm when i have added it all up. i also think but am not sure that the spire hospital bristol also has a self pay scheme if you dont have insurance and that you might be able to pay all the fees monthly or something like that, its always worth enquiring




andrea

Hi Andrea

Those costs do not seen too bad, relative to what I have heard private ops can cost. But as you say, you may have more bills to come. Keep me posted, although, as all know, I am still adamant that NHS should cover the op.

I so hope you start to feel some benefit soon from the op soon.

All the best
P_M

.

I also saw Dr G. last week, who told me that pn surgery has still not resumed under the nhs, he did not elaborate. This is now 18 months since it was last performed a very long time and certainly not good news for uk patients.

He prescribed me two new drugs one being pregabilin. My surgery refuses to give them to me saying they on an amber light, in other words frenchay has to supply them for at least two months, then review before my surgery will take over the resposibility. Anybody else had these problems?


Regards Molly

Hi Molly

I think i can remember Helen writing about a problem with her surgery not letting her have Pregabalin when it was prescribed for her - Helen doesn't seem to be around much on here at the moment though -( hope that she is ok)

Hope that you get something sorted with your surgery - seems so unnecessary why can't it just be simple ?

Rosemary

hi molly
i was also prescribed pregablin by dr g and my gp issued an nhs prescription straight away without any trouble, i think some surgeries wont prescribe it as it is quite expensive and eats into their budget! i did have a previous surgery like this but changed to my current surgery who are very good concerning not stopping or prescribing treatment due to costs

Thanks ladies, I,ve had to contact Frenchay,leave a message for Dr G via secretary and pain clinic nurses, they were extremely helpful, Dr G won,t be back until next week, so I had to reauest multiple prescriptions until such time that my surgery will take it over, what a palava!


I too hope Helen is OK she is normally so active.

Molly

Hi PM

I actually managed to get my PCT to pay for my surgery at Spire as it wasn't available at Frenchay. Used the info on site as evidence for clinical effectiveness and argued about my poor quality of life i.e. pain and disability. It helps having a supportive GP. I also had to go though the individual treatment panel at what was then the PCT as I am out of area and the procedure was only available privately.
Six months post op and there has been no real improvement, however I did expect to wait anything up to two years. I would still have the surgery again though as it offered me the only hope of cure or improvement long term. Good luck, will keep my fingers crossed for you.

Lex1

Still battling for my medication,nobody seems to want to take responsibility.

I have heard that the macmillan centre at Frenchay has a different tenency agreement to the rest of the hospital so might remain put, be it it will be surrounded by up market housing.


I don,t know if this will happen but as southmead is such a dreadful place to get to I hope so.


Molly