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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Surgery cancelled again. WIBU to turn up to the hospital regardless?

484 replies

Wndof · 13/09/2023 17:06

I've been waiting over a year for life saving surgery. I was finally given a date for 31st August then they changed the date twice, switching my appointment with somebody else and then telling me they'd made a mistake with dates. Finally, 14th September (so tomorrow) was confirmed and I've undergone all of the pre operative tests and assessments, made arrangements for the children, XP secured the time off work.. only for them to text me just now and say the surgery has been cancelled due to a bed issue.

I called the admissions coordinator who has been absolutely terrible throughout and told him that I plan on turning up tomorrow morning and won't be leaving.

I read on here thats what somebody's father did in the same situation and he got his operation.

WIBU to give it a go?

Sorry if I seem dramatic, I just cannot endure this utter shit any longer 😭

OP posts:
widowtwankywashroom · 15/09/2023 16:39

Not every ICU bed in the UK is full. I doubt every ICU bed in London is full.

I was responding to this, yes there might be beds in one ICU available, we had beds available yesterday, but guess what by the end of the shift, all 3 had been taken!

widowtwankywashroom · 15/09/2023 16:41

AromanticSpices · 15/09/2023 16:39

Why are you making up that the OP has suggested any of this? It's making you look unhinged.

I am not suggesting the OP is making this up, I was referring to the poster who said I had no knowledge of intra and post op specialist care!

AromanticSpices · 15/09/2023 16:44

widowtwankywashroom · 15/09/2023 16:41

I am not suggesting the OP is making this up, I was referring to the poster who said I had no knowledge of intra and post op specialist care!

That poster said the opposite - that you were very keen to let everyone know your expertise. You've also misread my post.

I hope you read things a bit more closely in your actual job otherwise things like "mistakes with dates" might happen...

widowtwankywashroom · 15/09/2023 16:47

AromanticSpices · 15/09/2023 16:44

That poster said the opposite - that you were very keen to let everyone know your expertise. You've also misread my post.

I hope you read things a bit more closely in your actual job otherwise things like "mistakes with dates" might happen...

It could be read either way, that's why we questions things at work! I also haven't had a glass of wine at work!

Wndof · 15/09/2023 16:58

Dear God @widowtwankywashroom I hope your bedside manner is less abrupt and condescending than your demeanor online. You seem to have a very low tolerance when it comes to seriously ill people being in emotional distress.

In all of your training did you not come to understand that sometimes people who are in crisis might come across as a little bit unreasonable to you, the professional, not in crisis.

Please tell me you're not at Kings.

OP posts:
AliciaLime · 15/09/2023 17:00

widowtwankywashroom · 15/09/2023 16:35

Maybe be my degree in adult nursing, my post grad certificate in critical care nursing, 10 years experience in a neuro critical care, 5 of which at sister, does make me qualified to comment on intra and post op specialist care!
But yes do the op and then lets pop you in the back on an ambulance to a small district general ICU, where the staff have no idea about monitoring a neuro pt, have no idea how to monitor intra cranial pressure, have no idea what to do if it rises and if the pt has a bleed post op in this small ICU we'll just pop her in the back of an ambulance to the bloody neuro centre!

Oh sorry, that’s all wonderful of course, but I think you missed my point, which was, I think she needs a little bit of compassion.

Wndof · 15/09/2023 17:01

@AliciaLime I see you and thank you ♥️

OP posts:
AliciaLime · 15/09/2023 17:04

widowtwankywashroom · 15/09/2023 16:37

Then the pt in ED who need immediate surgery due to a ruptured penis needs surgery, the lady who is having an ectopic pregnancy gets a slot, the ruptured appendix gets slotted in.

That’s good to hear it’s never wasted. I had thought that the occasional time one of these cases isn’t waiting might be the reason the occasional patient that (per some people reporting on this thread) turns up after a cancellation does get slotted in.

Ruptured penises though - out of the way, ladies!

AliciaLime · 15/09/2023 17:06

Wndof · 15/09/2023 17:01

@AliciaLime I see you and thank you ♥️

I see you too, and really hope this gets resolved for you soon.

While I’ve had lifesaving treatment from the NHS - I’ve also had scary and negligent treatment. Either way the people I remember the most are the ones who treated me with compassion. More often that was the lowest paid HCA who bought me a cup of tea in the middle of the night.

widowtwankywashroom · 15/09/2023 17:12

Wndof · 15/09/2023 16:58

Dear God @widowtwankywashroom I hope your bedside manner is less abrupt and condescending than your demeanor online. You seem to have a very low tolerance when it comes to seriously ill people being in emotional distress.

In all of your training did you not come to understand that sometimes people who are in crisis might come across as a little bit unreasonable to you, the professional, not in crisis.

Please tell me you're not at Kings.

You have no idea how I conduct myself in work. The letters, card, flower's, chocolate , proposal of marriage etc I've received.
Nor do you know about,
The brews I've made, the toast, the hands I've held.
But as to where I work......

AliciaLime · 15/09/2023 17:15

AromanticSpices · 15/09/2023 16:44

That poster said the opposite - that you were very keen to let everyone know your expertise. You've also misread my post.

I hope you read things a bit more closely in your actual job otherwise things like "mistakes with dates" might happen...

You’re correct, thanks. I was just trying to say, the OP is in a really hard, emotional situation and is living with, what another poster described like holding a hand grenade, waiting for someone to take it from her. Of course she’s trying anything, even things that seem like a long shot. It’s not an ingrown toenail.

We know there are (most likely) medical experts on this thread. But she needs support, not snarking about her lack of knowledge on ‘insert medical language term here.’ I bet she’s an expert by now on the type of brain aneurysm she has though.

Also - she’s getting different explanations from the hospital on the cancellation reason too. Of course she’s not just going to sit and wait politely in the meantime. FWIW my mum did this. Waited patiently. And waited. It turned out that they’d accidentally taken her off the list. Nobody was ever going to call. There’s quite the possibility, when there’s chaos at this level that they might just not call her. It would be worrying if she were passive about it.

AliciaLime · 15/09/2023 17:16

widowtwankywashroom · 15/09/2023 17:12

You have no idea how I conduct myself in work. The letters, card, flower's, chocolate , proposal of marriage etc I've received.
Nor do you know about,
The brews I've made, the toast, the hands I've held.
But as to where I work......

Edited

Wonderful!! I hope the proposal wasn’t from ruptured penis guy after you fitted him in as an emergency 😀

Wndof · 15/09/2023 17:32

@widowtwankywashroom You're right I don't know how you conduct yourself in work but I do know how you've conducted yourself on this thread. It's a shame that somebody with your valuable experience and credentials would choose to be unkind in these circumstances. I am here and I am reading everything, you know that. It's quite different to having a moan with a colleague in the canteen after dealing with a difficult patient. I haven't done anything to you.

OP posts:
Zebedee55 · 15/09/2023 17:54

Wndof · 15/09/2023 17:32

@widowtwankywashroom You're right I don't know how you conduct yourself in work but I do know how you've conducted yourself on this thread. It's a shame that somebody with your valuable experience and credentials would choose to be unkind in these circumstances. I am here and I am reading everything, you know that. It's quite different to having a moan with a colleague in the canteen after dealing with a difficult patient. I haven't done anything to you.

Sorry you're going through this - the NHS is really in shit order. 🙁

If it helps, DD works for the NHS and tells me that "squeaky wheels get there quicker" - so I would keep contacting them (do not abuse, or insult anyone - the one answering the phone is not the problem), but keep banging on.

Oh, and from bitter experience - Never assume that all those working in the NHS are compassionate etc. Many aren't. 🙄

Good luck 💐

widowtwankywashroom · 15/09/2023 18:01

Wndof · 15/09/2023 17:32

@widowtwankywashroom You're right I don't know how you conduct yourself in work but I do know how you've conducted yourself on this thread. It's a shame that somebody with your valuable experience and credentials would choose to be unkind in these circumstances. I am here and I am reading everything, you know that. It's quite different to having a moan with a colleague in the canteen after dealing with a difficult patient. I haven't done anything to you.

Point taken
However I'm just trying to explain why having the op done and then post op care in a separate unit would be dangerous
No one who cancels surgery does so lightly, the meetings and negotiations that go on behind closed doors are hard. It's at the back of everyone's mind that cancelling and op could mean the difference between life and death. It's a tortuous decision to make.

jacks11 · 15/09/2023 18:13

@Wndof

I’m not saying for a second your life is not valuable. I don’t think that, I doubt anyone in the clinical or admin team you are dealing think that. I suspect you know that, though.

If you think phoning and contacting them every day will help, then as long as you are polite, do whatever you think you must. I’m not convinced it will move things forward- it sounds like there are complex reasons for delays- but it’s unlikely to cause a delay unless it were to lead to a breakdown of patient-clinician relationships (which I doubt). But please try to be calm and reasonable- not easy I know- but being on the other end of upset and angry patients isn’t easy either.

I think what you are asking for in terms of “outsourcing” is understandable but (kindly) naive as to what is involved in the planning of your procedure from a clinical perspective, the availability of facilities locally and pressures of beds in these other units.

I have no idea if other nearby hospitals (NHS or private) have the specialists able to do the surgery you need and the appropriate post-op facilities. If you need neuro-ICU- from your posts I think this is likely (but I’m not a neurosurgeon, so could be wrong)- then these beds are limited in number. I think they would be extremely reluctant to do the op in your hospital with the express intention of transferring you immediately post-op. There is no guarantee you would be fit for transfer and if that were to be the case but there was no bed, the potential consequences are very serious. I would be very alarmed if anyone would agree to such a plan.

It’s not as simple as just going to another hospital because they (currently) have an available ICU bed. Your team can’t simply check with other units who are able to carry out your procedure and send you up to wherever currently has an ICU bed today. I know it is nice to think that it would be that easy, but it really isn’t. Other specialist nhs units will also have their own patients and waiting lists and bed pressures- I would think that you would need to be higher priority than the most urgent patient on their list for it even to be considered (unless a reciprocal agreement is in place between hospitals/ trusts or in cases of acute emergency). Even were they to agree, you would still be delayed because your surgery will have been carefully gone over by the surgeon and/or interventional radiologist and discussed at MDT. There will be a plan, based on guidelines, best practice and the individual clinicians preferred methods/experiences etc. No doctor will simply read someone else’s plans and just do it that way- it is usually not that straightforward. They’ll need to look at your scans etc and decide how they would proceed. Even if there was an agreement to transfer your care, you would still be at the mercy of the icu/neuro-icu bed capacity of that hospital. There is no guarantee that you’d not run into issues there too.

yes, there will be specialists able to do your procedure that do not work in your hospital. But if they work in another nhs hospital, they are unlikely to be free to come to your hospital at short notice as they will have their own clinical responsibilities at the place they work. And it will be very expensive to get someone privately (especially if they then run into issues with beds again)- not impossible but not common- I’ve only ever seen it happen where there literally was NO specialist working within the trust able to do what was required. And again, these “new”specialists would have familiarise themselves with your case. And you’d still need a free ICU bed.

Look, I get it- you are frightened, frustrated and want to get the surgery done so you can recover and get on with your life. The clinical and admin teams want that for you too. But they have to do it safely, balancing your needs with that if every other urgent case. It’s crap that it has got to this point, it really is. Good luck OP.

widowtwankywashroom · 15/09/2023 18:15

@jacks11 has said it far more eloquently than I did, but those were the points I was trying clumsily to make

Wndof · 15/09/2023 18:25

I guess it's human nature to look for hope when there doesn't seem to be much/any isn't it? My logical brain knows it's not that easy to just magic up a new team equip to deal with my case, it's just really frightening having to face the reality that the team I do need are unlikely to be doing it in the near future.

My mind goes to another thread that is on here at the moment about the 19yo young lady with mitochondrial disease and how she's desperate for her dialysis to continue and wants to keep fighting dispite likely approaching the end. I imagine people have thought she's deluded at times as she insists she wants and needs XYZ. It's the desperation to live that drives it.

When I asked the secretary's P.A for her estimate of a time frame she couldn't give me one and said she couldn't possibly say, it could be a month or longer. I just wanted to cry. I'm living day by day at the minute and praying to wake up the following morning (but going to bed thinking that I won't)

Btw, whenever I've spoken to anybody at the hospital I've always been very polite, even apologetic. I'm a very agreeable person, to my detriment most of the time.

I do hear what you are saying.

OP posts:
widowtwankywashroom · 15/09/2023 18:44

@Wndof I do understand where you are coming from
I just want to let you know we don't make these decisions lightly - we know its not just an operation, its a life, a life who is valued, loved and whom others depend

Wndof · 15/09/2023 18:55

I realise that. Thank you for caring about your patients.

OP posts:
ELOU1111 · 15/09/2023 20:25

It would most likely be filled with another patient if it was up to the day before surgery. The patient selected off the waiting list would be picked bearing in mind the length of the cancelled slot available and clinical need. It would not go to someone who just turned up despite bieng cancelled. This behaviour would more than likely get an alert put on your records...the last thing a busy surgical admissions lounge needs is to be dealing with someone who thinks they can bend the rules, spend time explaining why they won't get their op this way, documenting the conversations etc whilst trying to admit patients who are actually on the list. It is a president that hospitals wouldn't be able to set and this is why a surgeon would not slot in a waiting patient on the day. Been a nurse for over 25 years and on pre op for 17 and I really understand the disappointment and frustration but this isn't the way.

ELOU1111 · 15/09/2023 20:26

*precident!

ELOU1111 · 15/09/2023 20:27

Precedent even! Grr predictive text

SomeCatFromJapan · 15/09/2023 20:53

@widowtwankywashroom your bedside manner could do with some work though.

AliciaLime · 15/09/2023 20:57

ELOU1111 · 15/09/2023 20:25

It would most likely be filled with another patient if it was up to the day before surgery. The patient selected off the waiting list would be picked bearing in mind the length of the cancelled slot available and clinical need. It would not go to someone who just turned up despite bieng cancelled. This behaviour would more than likely get an alert put on your records...the last thing a busy surgical admissions lounge needs is to be dealing with someone who thinks they can bend the rules, spend time explaining why they won't get their op this way, documenting the conversations etc whilst trying to admit patients who are actually on the list. It is a president that hospitals wouldn't be able to set and this is why a surgeon would not slot in a waiting patient on the day. Been a nurse for over 25 years and on pre op for 17 and I really understand the disappointment and frustration but this isn't the way.

the last thing a busy surgical admissions lounge needs is to be dealing with someone who thinks they can bend the rules, spend time explaining why they won't get their op this way, documenting the conversations etc whilst trying to admit patients who are actually on the list.

Oh, I just thought OP was someone in a desperate, life limiting situation, trying to figure out how best to have her planned lifesaving surgery proceed, or at least get a new date confirmed, rather than ‘someone who thinks they can bend the rules’ but thank you for the information.