Dad just diagnosed at 80 but why the long wait?

Hi Sol,

I am so sorry to hear this. A terribly stressful time now for your dad, for you and the rest of the family. Counting the 8 week wait for scan results, this is an appalling long time to leave someone knowing that they have cancer and not doing anything practical about it - that's five months in total just to the consultant appointment!! Unacceptable no matter what age anyway!!

Welcome to 2020s NHS

I suspect it may depend on which health authority area you are in. Mine was masses quicker than that, despite not being the same circumstances. I hate to say it, but I do suspect Ageism is as rife in the NHS as it is in other walks of life such as the workplace. Everyone denies this but often the evidence would suggest otherwise.

In view of that, and your dad's stage and health and age and fitness, I can only suggest that you push. And push hard! And again and again until you get satisfaction! Never mind that he is 80. He is a number on their database. But he is YOUR DAD and he is a not terribly old person (80 is by no means "old" nowadays - I know many 80-somethings who look and feel and act are are just like 60-somethings or younger!!) and he has a perfect RIGHT to live a full life which could easily be another ten years or more. He has paid into the NHS all his life and I am so angry that it looks from what you say as if they are dithering because of his age. Might not be that - but whatever it is, he, and you, have the RIGHT to know why the delay is so long!! This delay seems unacceptable to me.

I may be wrong as I have only my own experience to go on, and whilst my GP isn't worth giving the time of day to, once you get into the system down here in my part of Devon, there doesn't seem to be delay anything like you describe. I am 64. I do wonder if health authority combined with age are factors in delays but like I say, I only have my own experience to go on, plus that of a 50-something neighbour who was so fast-tracked that he ended up in surgery two days before Christmas, having only first discovered there might be a problem about 6 weeks earlier. 

Please contact the Team "discussing" his case, and ask for an explanation of why the wait is so long. Could you consider being seen and treated in a different town or area, if they turn round and say they don't have enough surgeons/beds/specialists or whatever? I believe it is a patient's right now to request a different health authority and it might be worth a try.

This is all so stressful for you all. However, please don't take this lying down but try to do as much as you can, if you haven't already started, to investigate the whys and wherefores of this very lengthy wait. It's not just putting his health and recovery at more risk than should be necessary, it is also causing you all as a family a great deal of stress and worry. Stress is not good for people and when he already has a health condition, piling more stress on him and on you with this long wait, is not the optimum for a good outcome in the long run.

I really feel for you and wish you all well, and your dear dad of course. If it's any consolation, once he has had this consultation with his surgeon he may be in hospital within the week. However, that is still two months ahead, and whilst they say RCCs are slow growing, it has already entered a vein and he is down as a T3a, so surely sooner rather than later would give him the best chance of the best outcome?! 

Hugs to you and your dear dad. 

Hi Maite,

Thanks so much for your reply. You are so kind to send such a lengthy message mostly saying what I actually think! I really do think it’s because of his age. We have a nurse we can contact with questions so my dad has contacted her but it’s the usual ‘oh she doesn’t work Fridays’ or an answerphone! 
I will phone her tomorrow and find out what we can do. At the appointment where he was given the diagnosis there was no mention of how long it would take for the operation, not naturally we thought asap so we were surprised when they said July! 

I understand he is 80 and that actually he may not fair well having the operation but surely if they were open and honest, which I don’t feel they are being, we could have these frank discussions without feeling like we’re being misled .

We live in Solihull so went to Warwick hospital (cos heartlands is awful) and now he’s been referred to Walsgrave. 

I think tomorrow will be a day of phone calls and stress. Best of luck to you with your journey. I hope you are doing well x

My replies are always lengthy!! - I tend to use 20 words where 5 would do, in literally everything I write!

But although "reassured" certainly isn't the right word, I'm glad that we are on the same page in a way, but just so sorry that this is the conclusion you, like I, are coming to. 

"...but surely if they were open and honest, which I don’t feel they are being, we could have these frank discussions without feeling like we’re being misled.. ."

...Exactly!! You have a very balanced view on all this, taking into account all the circumstances, and you deserve at least to be treated openly and honestly. 

Atm they seem to have left you in limbo. Along with all the worry and stress that this causes. If you manage to get to a discussion with them - even if only over the phone for now - perhaps you will get some answers and can then move on a bit. Communication is everything, whether in health matters, in the workplace, or anywhere else. Leaving people in the dark may work for those who insist on their weekly day off, but at the end of the day it's not good customer care, not good what we used to call "bedside manner" (without it being literally at the bedside) and certainly not a good advert for our already damaged NHS.

Good luck with moving this forward, and I hope you can get answers of some sort. It may be very stressful trying to get those answers, but no more stressful than being left in the dark and left hanging with your worry and your fear, which is what they appear to be happy to do to you at the moment.

Sending you and your dad and family big hugs 

p.s. I am doing pretty well. Thank you! 

Hi Sorry to hear about your father. I hope that you're both doing ok after being given the news. It's always such a stressful time from being notified to the actual appointment procedure date. I was informed in 14th April 2024 and waited till 21 June 2024 for the procedure . You could contact his CNS nurse to ask whether he will be seen any sooner. I would definitely contact your father's nurses to hurry this along, it doesn't matter what age someone is, to somebody else that person is a "loved one" and not just another number/patient.  I hope that you both get the answers you need. Keep us all posted. 
lots of love 

Waiting is horrid. And at your dad's age it seems even more wrong somehow when we want time post op to enjoy what time we have ahead whilst still fairly ok and independent.  But re age just fyi .... I am 74 and my very lovely consultant who I have full faith in said very plainly that were I any older or less fit (I am overweight but otherwise ok, not on any meds for anything) he would not have been prepared to operate as it is "a very major surgery". I have taken a long time to heal and am still not back to normal energy or fitness after 5 months. It is a long slow process it seems particularly as we age. I would ask for an honest conversation as soon as possible. The strain of waiting in uncertainty is not fair on you or your dad.

Hi TillyV , thank you for your message. Yes his age is certainly a worry although they say it will be keyhole surgery. We’ve managed to book a private consultation on Thursday with his surgeon that he’s been referred so hopefully he can talk to us about all of the options.

Sorry to hear that you have also been through this. I hope you continue to do well and start to feel stronger. X

Thanks Jd19801 , I agree and we’ve been onto his CNS nurse and she wasn’t aware herself of how far away dad’s next appointment is and so she’s been very helpful. She’s advised us to book a private consultation with the surgeon, which we’ve done and will see him Thursday. All we want is some answers to our questions and such an anxious time. Hope you are doing well after your surgery? X

So glad you have found a way to move things forward. This is sounding very positive now, and you should get answers soon. Well done!

Keep positive. You are doing great and your dear dad is going to be in the best hands possible now this is starting move forward.

Thanks Maite ! Where there’s a will, there’s a way! Thanks again for all your support and advice x

Good to hear you are seeing the surgeon soon... that should get things moving ahead. I had to have a private consultation with one of the urology team in order to get the information I needed re my pending op. Poor NHS us so overtretched. I do hope he is rwaly heloful. Make sure to have every query written down and to take written notes on answers. Best of luck to your dad.