Time from diagnosis to treatment

Hello Ian

i thought the delays and poor continuity of care with urology doctors was a particular problem with the hospital trust we are using!  The ‘complacency’ ( the words I want to use might be subject to being moderated out!) that you have encountered is shocking.  Every time we received a copy letter or an appointment, my husband had a different consultant! We never actually saw an urology consultant - only junior doctors who didn’t inspire confidence or give much information or even treat my husband as a human being - more like an object on a conveyer belt!  The prostate cancer nurses were the team who, to us, seemed to know what they should be doing.

I don’t know anything about the Welsh NHS system. If you were in England I would be advising you to write a letter of formal complaint to the Trust chief exec and copying in the Chair of your Integrated Care System, your MP, your GP, and the Chair of your Health and Well-being Board at your local authority. I’m not sure whether you have the equivalent set up in Wales. In short, I would be livid!!!

as I alluded to yesterday, despite the publicity given to prostate cancer by media and famous people ( ( Stephen Fry et al), I think men are not being given a good deal - too few resources, insufficient research, lack of urgency, too little information, etc etc). Considering 1 in 8 men get prostate cancer, the treatment options remain crude and harsh in terms of side effects, mass screening is not in place and  men under 50 struggle to get PSA tests even when there is a family history, A lot is known about the genetic risks but it is taking us over a year to wait for genetic screening. 

Prostate cancer seems to have been accorded a much lower priority than breast cancer ( I acknowledge that men can get breast cancer too!).  

rant over!  I do hope you get to see an oncology consultant and urology consultant ( not junior doctors) soon. 

best of luck!

Hi Ian 086 I suppose everyones experience with GP and hospital are all different, I was not happy with my GP nor one of the urology team, but overall experience is good, 

Hi Ian 086 I agree with Ulls - They are all different - I have seen my urology consultant 4/5 times (I did have a 10 day stay in hospital though) and I have met my Oncologist consultant once.

As for the GP practice - you would think they don't know what Prostate Cancer is and I have to research the side effects of my HT and then advise the GP practice what we need to do - still they do listen!

Good luck with getting to see your consultant.

Brian.

Hi all

After calming down somewhat today I managed to speak to the specialist nurse and expressed my displeasure at the performance of the fool that I saw yesterday. She was, as always, great and after I mentioned going the private route she suggested remaining in the system, seeing the operating surgeon, where I might get a better idea of where I stand, and if still not happy the option of seeing an oncologist or going private is still there. Still, this means more waiting on top of the near 8mths so far.

Ulls and Brian, I have had the exact same experience with my GP. Sympathetic look on his face but no real input or advice. More training required I think.

WW, please do RANT ON. I am afraid that I don't have it in me to write letters of complaint especially as the cynic in me thinks that they would probably head for the nearest bin. Can you imagine the letters of complaint if what we are seeing is the norm.

Best wishes and good luck all.

Ian

Hi Ian - Just a couple of things, I know you are having issues with the general administration and the lack of progress:

* My urology nurse said "he who pushes gets in the NHS" - I said to her well then can you sort my TURP operation out please that I have been waiting for and lo - booking and scheduling  were on the telephone with an appointment within quarter of an hour.

* My wife has had diabetic issues and a back problem and had been in hospital for about 12 weeks being passed from ward to ward and consultant to consultant no one taking responsibility. I tried the usual ways to get things moving, ward sister, PALS etc but to no avail. Out of frustration one afternoon I e-mailed my M P's office with the details of her hospital history. The following morning they were all over the case - scans, x-rays, a back brace fitted, a visit from a specialist diabetic team - oh and discharged a couple of days later - quite well!!

Just a thought Ian - but your health comes first - and it's important. Give them some welly!!

Best Wishes for a successful outcome.

Brian.

Hello Ian, can I beg to differ? If you have the energy to write about your experiences here, surely you have the energy to write to somebody with some power?!! As Brian says, we do have to ‘push’ to get the care and treatment we need. At the beginning of this journey I heard on the radio that the NHS has developed into a two tier system. Those that push get the care, those that don’t are overlooked.

My husband won’t do this pushing - but I do! I will fight tooth and nail for him to get the care he has paid for in terms of taxes all his working life. It is the Government that is breaking the contract it made with the people - you pay your taxes and we will provide your care from the cradle to the grave. We paid our taxes they are not doing their bit.

as I said, I’m not familiar with the Welsh healthcare system but, as Brian said, you do have an MP. If Wales has moved to integrated Care Systems - the chief exec and Chair? Go above the Hospital Trust! You can do it!! If you can’t do this pushing, do you have somebody to fight your corner? Your health and your life are worth fighting for!

I’m still ranting!

Hi Millibob and WW, you 2 are giving the game away, you sound like me, shy boy's and girl's get nowt, so shout.

I spent 30 years trying to get others to do things for me they were too busy to do. Constant, regular and friendly pressure worked for me!

Regards

Stuart

Quite right keep asking firmly but respectfully 

Absolutely - you won’t get anywhere with abuse or aggression - I have found tears work wonderfully ( not that I have wanted to cry!)