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Serious concerns re delay in treatment

User
Posted 15 May 2026 at 14:39

If anyone has seen my previous post we were very concerned that husband had been overlooked for appointments.

It's hard enough to be told you need a drug that may cause harm to your body as well as hopefully effect a cure, but to have to navigate poor communication and indifference is an added stress. 

In short husband still hadn't been prescribed the Apalutamide he was told he needed for his locally advanced PC. 

It was months overdue. 

On 28th April we finally saw a consultant who told him he had still got a 2 week wait for even the "Apalutamide education"  which was ridiculous as bringing us closer to his pre Radiotherapy scan. 

After 2 weeks he rang the CSN line. No joy, no help, no concern or interest. She gives him the pharmacy number. Yes he's on the list. May even be a 4 week wait now. 

OK we send email to PALS on Wednesday. He includes a timeline of events from start to finish.  This is stressful, takes ages  but we keep it clear and factual. 

Amazingly an email reply comes on Thursday. They have escalated it to a complaint. Shortly afterwards a different nurse telephones, apologises that he has " fallen through the cracks" and a telephone "Apalutamide Education" is booked for the following Monday. He will be able to puck it up on Monday afternoon. She tells him a consultant will be ringing to apologise .

The consultant rings today. Speaking in a very low voice she apologises and informs him of appointment for pharmacist he already knows about. 

She says, when pressed, someone was in holiday. Dear Lord, is this the best they can do. 

Well my husband is the most calm considered man and I have never seen him lose his temper and he's still OK with this. Just glad it's sorted. Confidence is not in the system. 

We shall be 100% on our guard. Not how it should be but how it is.  

But I think the message is clear: if you feel something is not right do approach PALS. They really do help. 

User
Posted 15 May 2026 at 16:33

Unfortunately there seem to be a heck of a lot of cracks that would be better described as fissures or chasms. 

Not linked directly to PCa but I was recently prescribed a beta blocker by a hospital consultant.  My GP had previously said I could not go on a beta blocker due to having a very low pulse.

When I got the tablets home I read the leaflet and it said under no circumstances should you take this medicine if your resting heart rate is below 60bpm.  Mine is 27bpm......

Four weeks later I managed to get hold of someone in cardiology, having not taken the tablets on my own initiative. 

Message passed from a consultant, DO NOT TAKE THE TABLETS,  they will stop your heart.!  

Its a good job I checked huh! But as the secretary said, these things happen! 

My god these people have no oversight.

Mick 

 

User
Posted 15 May 2026 at 17:09

Yes I believe it's all due to depersonalization.  You never see the same person, they have no interest in you as a person, no oversight, no overall view of your case. 

The sad thing is not only is it an unpleasant way to deal with people, but it's inefficient, time wasting and money wasting. Eg my husband generated about 4 phone calls and 3 emails back when it just needed someone to say hey have we booked his next appointment with the 'medicine men' 

User
Posted 16 May 2026 at 22:19

Sadly, things aren't very good these days. I'm waiting for an appointment for follow up (post RARP) with the NHS, following Private Treatment. I was referred back in September with the letter clearly stating that my next PSA test and review, was due in January. The only thing I have had so far is an email asking me if I still need an appointment, and if so, could I write a short reply to justify my answer. I told them I am recovering from stage 3 PCa, and have not been reviewed since last September. To date I have had no response.....

 
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