Planning for my dad's treatment

Yes giving him space is pretty important. If you do get to going to meetings with him then taking notes or recording can be helpful. There can be a lot to take in and a lot of numbers. Coming out of a meeting and knowing the number 3 was mentioned, but not knowing if it was Gleason 3, stage 3, PSA 3, or 3 lymph nodes is not too helpful.

Don't be in too much of a rush to go private the NHS can be just as good as private for cancer care. 

I can’t comment on the Royal Marsden but I can’t complain about the treatment I’ve had from the NHS.

With regard to support, family support is very important, but the support of others in the same boat as your dad IMHO is invaluable  in getting through this ordeal. I’m always banging on about Maggies but it’s only because it has been transformational in the way I have dealt with this disease. If you have a Maggies Centre close to you go in with your dad and speak to them and try and encourage him to join a support group. Or find out what other support groups are in your area, his CNS should be able to advise on that.

Good Luck,  and your dad is very lucky having you to help him through this.

Derek

My GP was quite insistent on being referred to the NHS. His comment was, sprained knee, twisted shoulder, private is great. Cancer diagnosis, you want to be on the NHS. He did refer me privately too, but the NHS appointments came through first, so I went that route.

Now that I support others, I have seen why this is. I've seen many cases where someone is referred to a private urologist for diagnosis, and then has a prostatectomy, which fails, and was pretty likely to fail given the diagnosis. This happens because there was no MDT invoved which is mandatory on the NHS, so no one was overseeing the private urologist.

So my suggestion would be always go with a diagnosis where an MDT is used, which is always the case on the NHS, and it might happen if you go privately in an NHS hospital. If you are interested in private diagnostic or treatments, make that clear - you can have these even if you are diagnosed on the NHS. Your NHS consultant isn't allowed to mention private procedures unless you specifically ask, in which case they can. I did offer to buy a PSMA PET scan (before they were available on the NHS) for the MDT, and I also asked if there were better treatments available privately (answer: you can chose when and where you're treated, you'll have a private room, I [consultant] get paid more, but the treatment is identical).

Also, if you go completely privately, all the support services are usually missing (no CNS, no ED or continence support, no holistic needs analysis or followup, etc). In theory you can still get those on the NHS (except the HNA), but getting back on that train after it left the station is pretty damn difficult.