Operation cancelled twice

[I8toys]

I have no clue what my AIBU is and I don't want it to be a bunfight regarding the NHS but we are just at our wits end. I appreciate others are in similar or worse positions.

Husband (53) diagnosed with stage 3 aggressive prostate cancer in January. Told to expect op date within 3-4 weeks as prostate needs to be removed as cancer is progressing outside the prostate and best course of treatment with radiation therapy afterwards. No date for surgery until April. First date cancelled in April because of Junior doctors strike - fair enough. He went in yesterday 2nd on the list - gowned up, dvt socks on - chap before him had complications so DH's surgery cancelled. Fair enough. We've waited months for this date and he has had zero treatment since January. I appreciate its a slow growing cancer in comparison to others but he was told its aggressive.

We are now waiting for another date. He's a teacher so now school has arranged cover for the months he would have needed off and its an absolute mess. Called up surgeon's office to be told he is now at the back of the waiting list again. What the absolute fuck? Can anyone give me any advice on what to do (if there is anything we can do) please because we are struggling.

Have you lodged a complaint with PALS? Other than that, keep harrassing them, keep phoning asking if there are any cancellations, etc.

Same happened with my father in law who needed an operation for pancreatic cancer, which was cancelled several times and was finally done around 7 months after the first scheduled op date, by which time it had spread too far and couldn't be controlled/removed. That was the same, promised a date in 4 weeks, cancelled on the day, rescheduled a month later, cancelled on the day, and so it went on. What made things worse was that he was too ill to come home so just languished in a hospital bad all those months, constantly getting infections and slowly wasting away. That was 15 years ago, so long before the current strikes and "austerity".

Bypass pals and go straight to your MP copying in PALS you'll see faster movement with it. Keep a record of everything because should the worst outcome happen you can take the hospital to court.

So sorry to hear that Taxguru. Phoned admissions and been told 11th May. Its just not acceptable at all. We've contacted our local MP's office and will look into PALS. I've never seen my DH angry or upset. Its horrible.

He needs to be offered a date within 28 data is he's cancelled on the day of surgery. PALS and call consultants secretary / specialist nurses daily

I work in a related field

That’s unacceptable. If he’s back on list he should be next not last.
I’d definitely speak to consultant’s Secretary again and PALS.
I had a major op cancelled at last minute- was about to finish work for 3 months sick just packing up and they called me. I was so upset on phone my breathing was shocking. They wanted to send an ambulance but I needed the surgery (airway) not an ambulance. Horrible time you both must be do stressed.

So sorry Dixie that sounds horrible. You get yourself prepared mentally and things in place and its for nothing. I think its an admin thing - they only want to piss one person off so they just move you to the back instead of being next in line which is how is should be.

I had my op the month later and it loomed over me until I did as I was so worried same would happen again. We also lost money as we had train and hotels booked (op was 200 miles away as it was so specialist) It was a huge success and changed my life so all good in end and I hope your husband is the same.
Keep pushing. Polite but firm. Keep notes of everything - names and dates. If no satisfaction push higher.
Work all he can do is keep everyone in loop it’s not his fault. Work will at least be understanding as they have also been striking.

DH had similar with cardiac surgery... it went on and on and on. In the end, I managed to get the Consultant's secretary's email and I pushed.. pushed and pushed. He eventually got it about 19 months after he was initially scheduled. Private wasn't an option sadly - we'd have gladly paid but the technique was only available via the NHS. Running our own business, the stress of booking time off, getting cover etc... horrendous. The worst part was that he was really unwell that whole time and the medication he was on wasn't working. The bit I'm most worried about is the long term damage that happened in that time...

We have thought about private but he wanted to trust the surgeon and the NHS! It costs about £25,000 so its a considerable cost. My parents have offered to put some money forward and DH's parents would probably if worst comes to the worst. The kicker would be that it would be the same surgeon who did the NHS op that he was cancelled for. Its madness.

The bit we were most concerned about was that the private hospital didn't have an intensive care facility, so if the operation went wrong or he reacted badly to the anaesthetic, they'd have to transport him from the operating table to an NHS hospital by ambulance. That's why we stuck and waited it out with the NHS.

Sorry this is happening. PALS and MP. Also surgeon's secretary and NHS England have a complaints process. Also mail PA to chief executive of hospital.

If you are considering this route. Some large hospitals have a private wing so transfer would be via trolley not ambulance.

Have you stressed you will take any cancellation - have they got every contract number for you and him.

It is bad enough that the ops have been cancelled, but going to the bottom of the list again is insane.

Is your DH on a testosterone blocker / hormone therapy whilst he waits? If not, it may be worth contacting the consultants secretary asap to query this. Good luck.

We've stressed we will take anything and everything. Its even on his initial consult letter. They have all our numbers and I'm home and on it like a car bonnet when they phone up. I feel like his PA. 😂With him teaching though its a bit tricky to take a call in class.

Re Hormone therapy/testerone blocker they've not mentioned it. We've had no contact with the consultant since the January diagnosis. Its just prostate out and then follow up treatment as required.

I don’t know enough to advise - I just wanted to say how much I feel for you in this situation. I really hope he’s seen soon.

Thanks Merangutan and everyone that's responded. Its keeping me occupied. I'm googling Chief Executive of the Trust.

Also NHS England complaints. I got my problem sorted very quickly. Make sure you cc MP etc on your email to NHS England.

I’m so sorry OP. I don’t really know details but would the ‘right to choose’ apply in this circumstance? Basically if there are compelling reasons, there are circumstances where you can ‘choose’ to have your nhs treatment delivered in a private facility at the nhs’ cost. I think it’s your GP who would be able uk help you pursue this, might be worth speaking to them?

Thanks Americas - never heard of this before. Will have a look into it.

I’d definitely stress to Secretary you are contact 1. You don’t want scenario where they ring with cancellation get no reply from him at work and move down list.