Help

Hello Johnam, sorry to read this. If you were in England I wouldd be better able to advise you but I don’t know how the Scottish NHS works.

what I do know is that I had to (politely) fight tooth and nail to get timely appointments in whatever way I could. Telephone calls, emails, letters of complaint, whatever came to m8nd. He was totally unable and unwilling to talk or engage with anybody - even when we got to appointments! I was exhausted but we got there!

in the midst of it I heard somebody on the radio say the nhs iss a two tier organisation. Those that can fight their corner get the care. Those who don’t fall by the wayside. Oh so true ……. But so very very wrong! 

i hope you can get the care your husband needs 

Hi Johnam 

I’m so sorry to read this, it’s appalling. Firstly I would ring both surgical and oncology to say you will take any cancellation no matter how short notice. 

Sadly I think if you can I would look at private. I know that it’s not going to be possible for many.  This wait is totally unacceptable. 
in England I think private first appointments to just talk to consultant are are £220ish . It would hopefully give you an idea of surgery is possible or not? 
before you do this though I would be sure that you can opt into the NHS for his treatment if you need to and if this would speed up the NHS treatment plan? 

Just my thoughts on it as I now wish we had gone private for the prostectomy with him being Gleeson 9 I’m worried what the wait may have contributed to his final histology . His operation is on Tuesday so can’t do anything now! 

Take care 

Good Morning johnam 

Well good news about the appointments - not the dates. I agree with everyone else "fight your corner". Here's the link I sent to people in Scotland about complaints - you might be aware of this already.

https://www.nhsinform.scot/care-support-and-rights/health-rights/feedback-and-complaints/making-a-complaint-about-your-nhs-care-or-treatment/

Good luck on your quest, keep us in the loop please.

Best wishes - Brian.

Good Morning Annieone 

Annieone said:

His operation is on Tuesday so can’t do anything now! 

From one fellow member of "The Gleason 9 Club" (who still has most of his prostrate) to another.

I hope all goes well on Tuesday and send my best wishes to both of you. Fingers crossed they will get the lot and he will have a dry speedy recovery. Look after yourself too - partners give so much support quite often without any thanks - you know what us men are like!!

Best wishes - Brian.

Thank you x

Thank you Annieone , hope the surgery goes well . Please keep in touch about his progress . We are just wanting the surgery and I will politely keep asking 

Many thanks Brian . I’ve already contacted PASS and they are drawing up a complaint . It’s supposed to be on Scottish Parliament question time today . So will wait and see . 

Hi Johnam.

Good morning, yes like everyone else is saying I would definitely "fight tooth and nail"

My OTH is like a "dog with a bone" so everyone had to "stand up and listen"

Hence everything went very very smoothly as with cancer the "clock is ticking" 

Yes please please "keep on there case" 

Please please let me know how things go I do hope things get moving very soon for you both???

Prostate Worrier.

Thank you so much I’m just upset that they are treating or should say my OH so badly in my opinion. He is 72 worked all just life and never had any surgery other than cataracts . Sad state of affairs xx

Hi Johnam and Annie

I absolutely understand your anxieties about waiting too long for treatment. If we could just have the confidence that the NHS was delivering care appropriate to our needs our prostate cancer journeys would be so much easier.

I just want to add a note of caution from our own experience locally and in England - it may differ in other areas and other nations.

We looked twice into 'going private' - for the biopsy and then for the insertion of the space oar to protect the bowel from radiotherapy. For the biopsy we were told we would have to go back to the initial consultation stage and then the biopsy would be later than the date being suggested by the NHS. In fact, my husband took up a late cancellation appointment.

For the Space Oar, the oncology consultant said the commencement of radiotherapy could be delayed by having to wait to have it inserted. Like yourselves, we wanted to get on with the treatment asap and so did not pursue this further. My husband was not very keen on the procedure anyway but I would have been happy for him to have it.

Obviously, NHS waiting times and private waiting times differ from area to area. I do hope that you can get the treatment you need and deserve without too much stress. For us, the hardest part of the whole journey so far has been getting access to that treatment in a timely manner.