‘Urgent’ surgery - two and a half years to wait ?

[twoandahalfyears]

I’ve been told I’ve got multiple bladder problems and urgently need surgery, cystoscopy at a minimum but probably work done once they put the camera in .

I was first told needed the op doing back in December 2016 , put on a waiting list in April 2017 .

In 2018 I was automatically removed from the list as I’d moved house . Seen by a consultant at new house , told I still needed surgery , tests on bladder in May last year showed very poor function and worsening of other problems . They said they couldn’t see me again until April this year , to discuss any surgery .

Unfortunately I had to move again - not a choice as such - and yet again , all appointments cancelled . Back to the first hospital .

New GP has enquired with urology at the first hospital what they’re planning now - they’re now saying I’ll most likely be waiting until 2021-early 22 before anything will be done . Frustratingly I’m having to move yet again in December too ...

I suppose it’s probably my own fault for moving but I genuinely don’t know what to do . I’ve been told I can see the specialist nurses in August but nothing until then , and I’m struggling a lot - have to catheterise 8-10 times a day (which the op is designed to stop) but I’m not sure what I do in meantime. I’m worried I’m going to end up with UTIs (I’ve had a kidney infection before), not sure what the best answer is .

Feel so frustrated , you would think NHS is NHS and if you were on one waiting list , you’d be put on another if you moved but aargh ...

How awful.

Is it possible to check around other hospitals to see if their are shorter waiting lists then pay to stay in a hotel nearby just before and after the op?

I honestly don’t think I’m allowed , because it’s Scotland as far as I know it’s the same team that cover two or three hospitals , so waiting lists would be the same wherever . As far as I know as well they only do urology stuff in the bigger hospital too .

I suppose as well I’m a carer to my mum , and would need to be home to help look after her .. and won’t get the family support with regards to transport etc .

I’m hoping that once I’ve spoken to the nurses they’ll do something to help . I’ve left messages with the secretary and my gp surgery to see if they can do anything before August .

Wishing I had private health though so could get it done and out the road . I can’t believe any minor surgery list could be two and half years long .

Oh I see. I would phone the consultant’s secretary once a week to see if there has been any cancellations.

If you know who your consultant is you can contact their secretary and ask to be called if there are any cancellations (which can happen if people are sick and can’t have an anaesthetic), I’ve had surgeries moved up for this reason. Ask your GP to write about how much you’re struggling.

You can kick up a fuss with PALS, the CCG (or equivalent in Scotland) and your MP. Enquire about guidelines for waiting times and whether they’re being met.

Our local hospital had to pay for lots of patients to have surgery at a local private hospital after the waiting lists got so big. Absolutely bonkers.

Actually I think I'd complain about them removing you from the waiting list in the first place.

Get on the phone and keep asking for the person's manager, keep going up the tree, until you get a sensible answer.

Could you use your mum's address in case it happens again.
Why do you move house so much?

What other surgery are they likely to do with along with the cystoscopy to stop you from having to catheterise 8-10 times a day? Because a cystoscopy is a very minor procedure, but anything else I'm aware of is quite major (I'm a veteran of bladder ops, having had first bladder augmentation, followed by bladder removal).

Regardless of that, that waiting list is absolutely crazy. Will you moving far from the hospital you are currently being seen at? That seems to be causing the issue, although it really shouldn't.

I don't know about the Scottish system, apologies, but do they have PALS like we do here in England? That would seem a good place to start.

University - I was in halls of residence , then had to take a year out of uni to help care for my mum - due to go back to uni in January next year . When I moved to uni I had to change GP and I think I remember them saying then I’d be pulled off all the waiting lists I was on .

I can use the catheters etc , but I’m not doing it as advised and I’m worried if you use catheters to pee you end up losing the ability to pee normally , I’ve no idea if that’s what could happen , or if there’s side effects long term or something like that .

Ilovefluffy they want to do a scope, dilitation, hydrodistention and then start me on installations instead ... I wonder if I ‘know’ you on Facebook groups! I’m always scared that’s what I’m going to end up being told that I’ll need an SP or a urostomy .

Quite possibly, I'm on a couple!

I ended up having a mitrofanoff and bladder removal along with the creation of a new bladder made from bowel.

I've had all the things you mention, didn't work for me unfortunately, but I know they do for others. Mind you, my problem was overactive bladder, and the instillations weren't for that particular problem, but the consultant suggested I try them anyway. Not really surprising they didn't work!

Strange. Each time we’ve gone anywhere near reaching a waiting time breech, we get letters about it with offers to go privately, paid by the NHS. I thought that was standard practice in Scotland.

They might be removing you from the list because your change of address is within a different trust.

Options to consider other than NHS if you're desperate:

• Do you have private health insurance?
• Pay privately
• See if you can get it done cheaper within other European countries (Croatia, Bulgaria and Poland often advertise services abroad are cheaper)
• Stay on your DMum's address to stay on waiting list

Basically your care is suffering because you’re at university. That’s not okay. Contact PALS and your MP, this is a shocking situation when you’re suffering.

Update - hospital nurse phoned and said she’s away to talk to the secretary for the consultants to see what they want to do , hopefully get the op sooner rather than later she said . She’s also phoning my GP to get better catheters than what’s been prescribed already . Hopefully hear by Friday what’s happening she said so that’s good .