Navigating the appointments with consultants

User

Posted 29 Apr 2026 at 21:56

I have always accompanied my husband to his appointments at Oncology, only 4 so far.

I do hold my tongue and agree with him what we'll mention before we go in.

So far it's all been a bit frustrating.

My expectations may be too high. I am an extremely empathetic person and when I worked I was known for excellent customer service in the job I did with the public. It wasn't retail and often included difficult people. So I'm not impressed.

Anyway these are my issues:

We have had several botches with appointments. Eg latest is below. .

Husband had a phone call from Radiology to book his pre Radiotherapy scan. May 24th was agreed on. 2 minutes later phone goes again. Hospital has seen note on husband's record we are on holiday from June 13th, so timescale doesn't work. June 1st is agreed on and we say 'well done for spotting that"

2 days later letter arrives confirming 24th May as appointment date. We are getting ready to go to a wedding, husband has to ring, blah blah blah and their mistake is corrected. This may seem trivial but it's the 3rd incident now of this kind we've had to correct.

My biggest disappointment is that not once has he been asked How are you? How is it going? Despite the fact he has been on Decapeptyl for 6 months to castrate him. The answer is: very well so far, including our love life. A lifetime of love, affection and passion goes a long way, together with 50mg of Sildenafil from our GP, and a Somaerect pump every few days. Thank you to the people on here who recommend such things. And no he's definitely not shrinking so far.

I had an idea on correcting this issue. I made a chart with the side effects in one column and his current side effects in the next column. The third column I listed any mitigations, eg daily walking, healthy diet, and the Sildenafil and the Somaerect pump. I thought it was quick and easy to glance at and may be useful in judging how much the addition of Apalutamide increases his side effects, which currently are almost nil apart from the ED and occasional few seconds of breaking out in a sweat. He is fortunate and very lucky there so far.

The CSN in the room glanced at it. The consultant, who we'd never seen before asked if it was from our GP and didn't look at it. Still I thought it was useful. Husband liked it and was keen on the idea.

Thank you for reading all this. BTW it seems he was overlooked for an appointment and should have had Apalutamide 2 months ago. We have been assured this will still be OK. Another mix up. He did ring up several weeks ago and the CSN he spoke to said he would have a call from the pharmacist for his Apalutamide education and would have it before his next appointment. This turned out to be incorrect as he hadn't signed the consent form. How could he, he's not seen anyone or been told he needed a consent form.

We also discovered the Radiotherapy consultant we've seen twice has virtually zero communication with Oncology consultants who we've also seen twice. We wrongly assumed when we discussed Apalutamide with him it was added to husband's record in some way. How silly of us.

I am left feeling unsupported really and that we need to be on the ball on what should happen next and when and we need to correct their mix ups. On our guard for their ommissions Anyway as husband said " OK let's move on we're back on track".

I still think the medical care is OK. He had a PSMA PET scan and is following a recognised best route of treatment.

Edited by member 30 Apr 2026 at 00:06 | Reason: Additional information

User

Posted 30 Apr 2026 at 08:55

You are correct when you say "unsupported really and that we need to be on the ball on what should happen next and when and we need to correct their mix ups"

To be honest the NHS has always been like this (I remember from 30 years ago when my Father had it) only now it is even worse. Clinicians no longer "own" anything and TBH most of them could be replaced tomorrow by Grok or Gemini.

All the good work in the NHS seems to be done by the associated technicians and psudo doctors who day in day out perform the actual skilled work that still gets done in the NHS.

I am having a hernia repaired next week as the NHS in Wales will not do anything until it is life threatening! I will let you know how I get on in the private sector.

User

Posted 30 Apr 2026 at 09:12

Hi Francij yes it seems odd that just from a clinical point of view they don't seems the least bit interested in how you actually feel physically let alone mentally. You would think it would add to their knowledge.
It occurred to me that the consultants view of how you're doing is simply the PSA result. End of.
It is very much like they're reading from a script.

User

Posted 30 Apr 2026 at 11:01

Antoinette, just to pick on two things you mentioned, I also found consultants never like to discuss what was done in the past. "How are you ? ", I also noticed in open bay hospitals nurses never make eye contact they fix their sight at something in the distance.

Thanks Chris

User

Posted 30 Apr 2026 at 11:42

It is odd. The current medication he's had injected into his body is not in the past anyway.

My wonderful godmother, an Assistant Matron in a colossal mental hospital did honestly care about her patients. She insisted they did get better and started weekly dances, netball for the ladies, anything to improve their QOL as its called now. She said caring went out of the window when the nurses uniforms got downgraded and they lost pride in the job. That was 45 years ago so who knows.

I do think rules and protocols abound now and take away the human judgement side of it.

What made me question it was a chat with my husband's friend. 2 years ago he called to say he was now on palliative care with his brain tumour and stomach cancer he'd been treated for in a different county and had 9 months left. When we saw him 2 weeks ago he'd had 2 all clear scans and after rigorous chemo there was no sign of the tumour. He said his consultants were so caring and everytime he saw them the first thing they asked was "How are you feeling in yourself, how are you? " He said it had made all the difference. I did wonder if being titled Dr himself, even though academic not medical, had made a difference, although I know he doesn't like to use that title. He is a professor in a scientific field.

If everyone has a similar treatment to us I'm not so bothered by the seeming indifference.

I also have relatives who work in NHS admin and I'm not surprised we get mistakes. I also know relatives, closer than us, who get earlier appointments and preferential treatment, like being moved to a private ward, which I don't approve of at all.

Edited by member 30 Apr 2026 at 11:44 | Reason: Not specified

Notification

Join the online community now.