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User
Posted 08 Dec 2023 at 14:22

Hi I wonder if you could help me.  

This past Monday (4.12.23) I was diagnosed with prostate cancer (Gleason 7 (4+3) - T2A - PSA 2.72) was told the options I had were (i) surgery and (ii) RT/HT.  I met a CNS (apparently one of a team of six) and handed a package of materials to take away.  She said I should be '90% decided' by the time I had my joint meeting with the surgeon and oncologist.  

I have just received a text from the hospital - telling me I had a meeting on 6th February 2024 at 10.30 am.  I called for clarity as to what this meeting was?  Apparently it is with oncology.  I really a more interested in surgery.  The call centre woman said: 'Oh, are you able to have surgery?' - I said, yes, it was in my diagnosis / treatment letter.  She said a nurse would call me.  That was this morning and I have heard nothing so far.  

I understand that there are guidelines.  31 days from the determination of treatment to the actual treatment itself.  (Is the determination of treatment from that joint meeting?  I also know of the 62 day guideline from the Urgent GP referral (in my case 30th October 2023) and the BEGINNING OF SAID TREATMENT.  This offer in my case would breach both.

Question:  Am I allowed to pay for a private consultation with one of the surgeons as my surgery consultation if I am not able to get a public meeting spot?  The consultant who did my biopsy told me he'd be happy to see me and 'would be around'.  

I can't wait until February.  I fear my anxiety levels might well do away with me by that point.  

Grateful as ever for your kind advice.  

Much, much thanks.  

Edited by moderator 08 Dec 2023 at 15:05  | Reason: Not specified

User
Posted 08 Dec 2023 at 17:16

Originally Posted by: Online Community Member
I understand that there are guidelines. 31 days from the determination of treatment to the actual treatment itself. (Is the determination of treatment from that joint meeting? I also know of the 62 day guideline from the Urgent GP referral (in my case 30th October 2023) and the BEGINNING OF SAID TREATMENT. This offer in my case would breach both.

They are only guidelines and NHS Trusts are not obliged to met them although they do have to report publicly about how close they are getting. The 31 day target doesn't apply to you yet - the clock starts ticking on the day that you tell the consultant / CNS which treatment you have decided on. The 62 day target does apply to your case but, in reality, you don't have any grounds for complaint yet because the guidelines aren't binding. 

If you are really concerned, you could phone the CNS and ask to be started on HT while you wait for your urology and oncology appointments. 

You could phone the urologist's PA and ask for a private appointment but bear in mind that we only have two weeks until Christmas and then the New Year bank holidays - many private hospital outpatient departments close down for the whole Christmas / NY period so you may not get a private appointment until early / mid January anyway. 

It is really hard being diagnosed at this time of year. John was diagnosed in December and then we found that the urologist and CNS were both on leave until January.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2023 at 16:51

If your journey goes anything like mine, you'll get numerous promises of return calls that never occur and more guidelines breached than complied with, leaving you feeling totally exasperated. I've found you often need to be politely assertive. If they don't ring you, you ring them, but be prepared to wait for hours for a reply.

Naturally, our cancer is paramount us, but often to them, we're just another NHS Number.

Don't get me wrong the staff have generally been very good, in fact, I've twice written complimentary letters to their CEOs. It's the system itself, especially interdepartmental communications, that often fails.

My wife says, "Your treatment has made you, an angry, bitter and twisted, little man." I said, "3 out of 4 ain't bad, I'm over six foot".

As for paying to go private, its something I'd considered but fortunately just managed to avoid.

 

Edited by member 08 Dec 2023 at 17:22  | Reason: Punctuation

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User
Posted 08 Dec 2023 at 16:51

If your journey goes anything like mine, you'll get numerous promises of return calls that never occur and more guidelines breached than complied with, leaving you feeling totally exasperated. I've found you often need to be politely assertive. If they don't ring you, you ring them, but be prepared to wait for hours for a reply.

Naturally, our cancer is paramount us, but often to them, we're just another NHS Number.

Don't get me wrong the staff have generally been very good, in fact, I've twice written complimentary letters to their CEOs. It's the system itself, especially interdepartmental communications, that often fails.

My wife says, "Your treatment has made you, an angry, bitter and twisted, little man." I said, "3 out of 4 ain't bad, I'm over six foot".

As for paying to go private, its something I'd considered but fortunately just managed to avoid.

 

Edited by member 08 Dec 2023 at 17:22  | Reason: Punctuation

User
Posted 08 Dec 2023 at 17:16

Originally Posted by: Online Community Member
I understand that there are guidelines. 31 days from the determination of treatment to the actual treatment itself. (Is the determination of treatment from that joint meeting? I also know of the 62 day guideline from the Urgent GP referral (in my case 30th October 2023) and the BEGINNING OF SAID TREATMENT. This offer in my case would breach both.

They are only guidelines and NHS Trusts are not obliged to met them although they do have to report publicly about how close they are getting. The 31 day target doesn't apply to you yet - the clock starts ticking on the day that you tell the consultant / CNS which treatment you have decided on. The 62 day target does apply to your case but, in reality, you don't have any grounds for complaint yet because the guidelines aren't binding. 

If you are really concerned, you could phone the CNS and ask to be started on HT while you wait for your urology and oncology appointments. 

You could phone the urologist's PA and ask for a private appointment but bear in mind that we only have two weeks until Christmas and then the New Year bank holidays - many private hospital outpatient departments close down for the whole Christmas / NY period so you may not get a private appointment until early / mid January anyway. 

It is really hard being diagnosed at this time of year. John was diagnosed in December and then we found that the urologist and CNS were both on leave until January.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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