Mr Ben
Please feel free to private message me, but I'll post here what is my understanding of the assessment process for eligibility for a penile implant. This is very much based on my experience and so may not in fact be 100% factually correct as far as NHS procedures go.
You and I have followed more or less the same treatment pathway. My prostatectomy was in December 2016, non-nerve sparing. Followed by radiotherapy and 18 months hormone therapy (bicalutimide).
I have not had psychosexual therapy which you have had. This should be a plus point in your assessment for an implant in the sense that you really have tried everything to help yourself and nothing has worked. Your age may or may not be a factor. I'm 50 in August. I told the consultant that as a young man I wasn't psychologically ready to give up hope of a sex life. He agreed. Some say age is a factor, some say it isn't. However, I do think telling a 50 year old they can't have an implant is different to telling an 80 year old the same thing. Sorry to all those sexually active 80 year olds.
In August 2019 I asked my oncologist what the procedures were for requesting a penile implant. She didn't have a clue. My cancer nurse said I needed to be referred to Mr ***** who would assess me. 7 months later, the appointment finally came through. I was asked what treatments I had used. Told him the only thing that partially worked was Invicorp but it was a bit hit and miss. Sometimes a satisfactory erection was achieved, sometimes not. Mad facial flushing though whether a successful erection was achieved or not. I also said that 5 erections per month on the NHS wasn't particularly good for my emotional well-being as a young man.
He immediately told me he was supportive of the application for funding. He also explained that there are very few surgeons who perform this surgery. He used to but has stopped and so said I would need to be referred elsewhere. I immediately told him I wanted to be referred to Mr ****** at UCLH. He asked why. I told him I attended a PCa support group in Chorleywood and that Prof **** had recommended Mr ******. He told me he was a personal friend of Mr ****** and that he would gladly make the referral.
I asked about the funding and if there were likely to be any issues. He told me that funding was dependent on how supportive he was of the application. He said he was very supportive and that he really did not see any issues. I would have the surgery and it would be dependent on UCLH waiting lists and coronavirus impact on the NHS.
So now I await an appointment at UCLH.
Your consultant was right to be cautious though. My consultant told me that all surgery carries risk, but this is a particuarly problematic surgery. Infection can happen and if the implant fails, a replacement may be possible, but not always. In short, he was saying stick with what you have at the moment - at least it partially works. Or, go for a risky surgery which could leave you with a 100% useless penis from a sexual point of view. Of course, he did also say that the surgery can be a life changer. I am actually more anxious about this than the prostatectomy.
My GP when I spoke to him about the implant didn't have a clue about anything to do with it.
All of my doctors, nurses and my GP have been nothing but excellent over the past few years. But I did tell them they need to brush up on their penile implant knowledge. No one had a clue about referral mechanisms and funding.
If I were you, I'd still be pursuing this. Your consultant is possibly being overly cautious. Speak to the PCUK nurses to ask about how you get a second opinion. If your near London, ask for a UCLH referral. I can give you the name of the recommended consultant there. Others on the forum have used him and are happy with the results.
Hope this helps.
Ulsterman