Does anyone in Northern Ireland with Prostate Cancer feel they are being passed around various hospitals like tennis balls? [sorry bad pun☹]

[Adlon57]

I have had prostate cancer since June this year, but appointments for treatment are being passed around various hospitals in east of Northern Ireland, conflicting appointments, lack of communications between these hospitals about my symptoms [and medical name of], conditions, supposed progress, medications, etc. I am not a doctor, but at the moment have to have the patience , memory of them, to tell them my type of cancer, my past medical conditions, over the phone, name of the doctors, specialists involved, I'm 66, retired! They suddenly mention a medical aspect, I almost feel they are going to slap my wrist, if I don't give them an 'exact' reply? I know they are under pressure as NHS in Northern Ireland, worst in UK, and it shows! The whole medical system here is completely disjointed, hospitals, doctors, specialists, and people are really beginning to REALLY suffer mentally and physically![people are dying regularly]

[Adlon57]

If I could afford it!🙄 It's the system here that's breaking down [?] right hand not knowing what the left one is doing? Sort of thing; being sent results, you can tell Dr ##### when you see him on 1st, letter arrived 3rd🥴🙄, a cancer psychologist check up on 23rd at 11.30 am in one hospital, chemotherapy, scans etc, at cancer centre 23rd at 2.00pm [a little bit too close, they did not know anything about each other🥴☹?] Asking me what did Dr. ??? say about your results? No interaction at all! It's utter chaos? I'll need every bit of luck, thanks👍

[Bunkerboy in reply to Adlon57]

sorry to hear this. Wishing and praying for you. 🙏🏻

[Huzzah1]

I saw 9 different Dr's after my DX so I could put together my team. Many of the groups are on the same IT platform - Epic - so they were able to see what was going on. Other groups were not. I have a binder that I put together that contains my notes from all the Dr's, I also printed out all of my test results and drug lists so I could hand them over so they could see everything without me trying to explain something and make a mistake.

[Adlon57 in reply to Huzzah1]

I'm trying to downsize in the house I've been here 19 years, mostly done, I might put all my medical correspondences, letters, appointments, etc into the spare room☹😏

[Adlon57]

Doh!🤔probably could not afford the postage? Most of the registered Drs, nurses, etc, are going private, they cannot afford on ordinary NHS wages!

[Adlon57]

Yeh🙄?

[StuartS]

Hi Adlon

I'm being treated by NHS a couple of districts north east of you..., Ayrshire and Arran. Their systems are well integrated and blood results for example, are usually on the system within 48hrs. I always request a copy of the blood results as it includes much more useful info other than just T and PSA levels.

Defo keep a running diary with copies of all your appointments and detail of named individuals in your cancer support team. If you have not been allocated to a dedicated team..., then ask Why Not!!!

Don't be slow contacting as they will have plenty of advice and support for you to consider.

Good luck.....

[Adlon57 in reply to StuartS]

Its not the people, its the 'system' they 'have' to adhere to, so disjointed, so ill informed! [so badly paid!]

[Adlon57 in reply to StuartS]

Actually some "politicians" if they would think of people as people not political pawns, it might be a quite nice place to live in! Whilst they go on their 'merry' way, the health of this province degenerates further and further🥴🙄

[Adlon57 in reply to StuartS]

You obviously have not been in Northern Ireland recently, NHS no longer exists as you know it! People dying just to get into a hospital, dying on trollies, waiting over 12 hours just to get into A&E, same situation all over the Province! We ALL know who is responsible, can they bear the responsibility whilst people are literally dying because of their 'stand points', many people are laughing behind their backs, but still the sick are getting sicker!

[GreenStreet]

I would always get a copy of every report they do. I always got a copy of any scan (costs a small amount). I have had to deliver background info on me that they should have themselves. It can be very disjointed so i take the view that you have to be on the case all the time rather than rely on them

[Adlon57 in reply to GreenStreet]

I'm making a start, scanning the appropriate letters, communications, just for the record🙄 so using super smart technology I can🤔?

[AlvinSD]

We have a big integrated system here in the US called Kaiser Permanente. Your experience sounds very much like my experience as a Kaiser patient when I was diagnosed.

Despite being a huge single payer “integrated system”, Kaiser can be extremely disjointed like you described. My diagnosis was a nightmare. Everything was done over the phone, took forever to get staging imaging, doctors who were indifferent and zero after support. No one asked about how I was doing emotionally, no one offered any sort of support groups, no mention whatsoever about sexual health aspects of treatment or helping with the side effects of Lupron. Worst and scariest time of my life made 1000x worse because of Kaiser. I’m in a better place now but the first 5 months of 2022 were a nightmare.

I presented with another guy (who is in a different region but had a similar experience as me with his diagnosis) yesterday to their corporate cancer care leadership about our experiences. Our hope was to try and enlighten them and prevent it from happening to others.