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

[Wndof]

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 😭

Your deleted post absolutely was racist. The NHS and education could cope fine with a growing population, if they were properly staffed and funded. That they're not is the fault of the government.

It must be very frustrating and upsetting to have to go through this. I’m a Dr. and I can absolutely assure that none of the clinical team, nor the admin side WANT things to be like this. We hate having to cancel patients, we hate not being able to do what we think best because of lack of staffing/ beds/ resources. The bed manager hasn’t done this on a whim or to spite you. They aren’t with-holding a future date deliberately. They are probably scrabbling around trying to sort out multiple issues, of which your case will be only one. I know you can’t care about others and need to focus on yourself and that you just desperately want this done (and I hope it happens soon), but the hospital is probably trying to juggle lots of things and work out how best to life forward.

However, I think you may need to be prepared to accept that no matter how much you badger, complain or threaten to go to the press or your MP etc- until there is an ICU bed available at the same time as the team that you needed to do your operation, everyone’s hands are tied. Staff might (often do) swap things round to try and co-ordinate for complicated cases but that isn’t always possible. And the fact remains that if ICU bed is needed post-operatively then unless that is available then they can’t proceed.

Being blunt- would you want them to? Would you want to go to theatre knowing that the intensive care you need is not available to you? Or proceed knowing that someone who really ought to be there as part of the team providing your care is absent? What do you realistically expect them to do if the issue is related to lack of ICU beds (probably as a result of an emergency or someone already in ICU deteriorating/ taking longer to improve than expected)? I’m not trying to be rude or facetious, I’m just trying to be realistic about what you expect to happen here?

The only other alternative if no bed available now is moving someone already in ICU out to make way for you. And believe me, if there was someone safe to step-down the HDU or the ward (and a bed for them there), they would do so. By it’s very nature, patients in ICU are unpredictable- someone you think is improving suddenly takes a turn for the worse or patients can take longer to recover than expected (and vice-versa), so it’s not an exact science. And that’s without the addition of emergency admissions or patients already admitted deteriorating and requiring step-up to ICU.

Pressurising staff- or, as is often the case, pressuring those in senior managerial roles into pressurising clinical staff- into doing something they feel is dangerous for you or another patient is my absolute firm line, I hate it. I hate the threats to “go to the press” when it’s sometimes genuinely out of control or not as a result of negligence or incompetence. It does sometimes work as management and boards hate the bad press because it gets politicians etc on their backs. And it is becoming more common as the NHS struggles more and more.

I don’t always blame patients- they shouldn’t have to feel the need to- but I do hate the pressure it creates down the line. Not so bad current job, but I have experienced it previously- it’s a horrible situation to be put in professionally and it’s one of the many reasons staff are looking at our current working conditions and thinking “I’m out”. It means patients being moved up priority above patients who needed more urgent treatment or pressure being put on us to take risks. And not always just for the patient doing the pressurising, which is somehow worse. It really can be so, so dangerous. And it’s usually patients who suffer and the clinical staff who carry the can when it all goes wrong. I’ve seen it once or twice when it’s all gone really wrong and it’s pretty awful for everyone involved.

I hope you get your operation soon OP.

I do hear you Jacks, it's an impossibly hard situation.

I don't think there is any one right way of dealing with the cards I've been dealt. We will all react differently.

I have two options presently. I either quietly accept my fate and hope I survive long enough for them to secure me a date naturally or I do as I've been doing over the past 2 days and try every avenue to be heard and push.

Knowing I have three small children who depend on me, I just don't feel as though I can be quiet and do nothing.

Sure, me chasing up every day and trying other avenues to get the message across to the higher ups might do nothing at all, but just maybe it might.

Being blunt- would you want them to? Would you want to go to theatre knowing that the intensive care you need is not available to you? Or proceed knowing that someone who really ought to be there as part of the team providing your care is absent? What do you realistically expect them to do if the issue is related to lack of ICU beds (probably as a result of an emergency or someone already in ICU deteriorating/ taking longer to improve than expected)? I’m not trying to be rude or facetious, I’m just trying to be realistic about what you expect to happen here?

Perhaps they could get in touch with surrounding hospitals and try to secure me a bed there. I would gladly give my consent to be transported post op. This is what would happen in the event that my aneurysm ruptures anyway, isn't it?

Ditto enquiring whether the procedure can be done in a private hospital, IE the Wellington or Princess Grace (?) and then transfer out for ICU.

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

I've been given two different reasons for the cancellation now. The first being that there's no available bed and then when talking to my consultants P.A today she has said that there is an additional complication of needing a set of specific individuals to be available on the day and for it all to tally up.

...so outsource the problem. Is it not possible to bring in people with the relevant experience from elsewhere. Doctors from across the world help far away patients all of the time. Would there really not be any qualified people in the whole of the UK?

My life has tremendous value as far as my children are donxerned. I just cannot come to terms with the potential that I might die thanks to bureaucracy.

I don't know why people push back on you to resolve the situation.

You didnt create the problrms in the nhs. You didnt create your own health problems. You expect this "world leading" health service to take care of you. They're not.

You expect better and you deserve better.

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

I have been in meetings where it's been stated that if any neuro trauma come in that day, they will have to be flown to France as no ITU bed is available any closer. And I do not live near the coast.

I really hope you get your surgery soon OP.

You're right, the OP can't fix that. But neither can the hospital staff she's been advised to badger or set her MP or the press onto. It's not the NHS that's not taking care of her, it's the successive governments which have underfunded, underinvested and exploited staff.

The op clearly has no understanding of the need for Specialist care intra and post operatively.

No bed means no operation and no amount of badgering will change that unless someone is pressurised into an unsafe medical decision by loud-mouthed politicians etc. The truth is the NHS is badly underfunded and understaffed by the Tories and we all live or die as a consequence. I hope it works out for you.

The op clearly has no understanding of the need for Specialist care intra and post operatively

ODFOD.

I do totally get that patients pressurising is an absolute pita and leads to people making overall poor decisions but I am with the OP here that the alternative - just keeping quiet and accepting things - is often not an option. Different situation but I've been in A and E several times recently with my mum and you can sit quietly and be totally overlooked. If you go and ask for an update, a good 30% of the time it turns out someone's forgotten they'd just popped off to get something and you've fallen through the cracks. Even at my private vet's this happened recently. I was supposed to be waiting in the car to be called in because of a potentially contagious condition. I was there 2 hours in the end even despite politely phoning in and it was traumatic with my cat v distressed- in the end I just walked in and said I simply couldn't wait in the car ant longer and got a big apology and was seen within minutes. Sometimes you just have to be visible for people to prioritise you, and sometimes that's necessary. In this case in particular the OP is willing to put up with a lot of inconvenience to be operated on. She was willing to be on standby on her day, to travel elsewhere - things that might not be considered viable if she wasn't there suggesting them. We all hate hassling doctors as much as they hate being hassled but doing nothing and accepting it just means someone else gets to be the squeakiest wheel.

You fight your corner. It will keep you going till you get your operation.

Or, alternatively, she just really doesn’t want to die and is scared and trying anything she can. But at least we all know now, that you, a stranger on the internet is an expert in intra and post op specialist care. Yay!!

@widowtwankywashroom Sorry, it must be the large aneurysm left to grow inside my head that is robbing me of comprehension skills.

Fucking hell. I’m so sorry. My dad was sent home with a brain aneurysm as the mri broke. It ruptured the next day. Just in a resources mind set sorting you out now will be much more cost effective for the nhs than dealing with a rupture. Prayers for you OP. Can’t believe you are getting a hard time on here. It’s like carrying a hand grenade and being told you’re over reacting for desperately trying to get someone to deactivate.

I 2nd what @jacks11 says I am a manager within surgery. Every day we have this same awful dilemma of listing patients by clinical needs vs capacity

In my Trust for the enhanced care beds /ICU an elective list a cancer would take priority. Then an urgent case priority again for anyone rescheduled previously.

It's not only the physical beds that are the issue it's the additional staffing required to keep everyone safe. We are reliant on people doing overtime to support and they are exhausted!

I understand its frustrating and scary but we are all really doing our best with managing ongoing covid backlog and continued industrial action.

It is breaking my staff having to call patients and getting the brunt of the obvious emotional patients

There are about 200 neuro-critical care beds in England and about 370 neurosurgeons, only a proportion of whom would do elective aneurysm surgery.

Every neurosurgical unit in the country has its own waiting lists, and its own cancelled patients desperate to be admitted.

Every surgical elective waiting list has been totally screwed by Covid, staff shortages partially related to Brexit and underfunding, and latterly strikes.

Neurosurgical cases are particularly vulnerable to cancellation due to the frequency of emergency cases (trauma, brain tumours).

Each complex case will have been carefully planned by the surgeon and the neuro radiologist, amongst others, at a multidisciplinary meeting.

I am so sorry your surgery has been delayed - it must be agonising. But it really unlikely that there is a simple solution of having it done quickly elsewhere.

Or, alternatively, she just really doesn’t want to die and is scared and trying anything she can. But at least we all know now, that you, a stranger on the internet is an expert in intra and post op specialist care. Yay!!

Thank you v much! This is exactly it.

I expect nothing less than sarky comments from some posters though, some people make full use of the anonymity that comes with posting online. They can be an arse to whoever they like and get no retaliation. Bold of them eh?

I'm a pre op nurse and feel for you. This happens a lot and must be so frustrating for the patient. However, just turning up is pointless. The theatre list will have been cancelled entirely or changed to reflect the bed situation and you are no longer on it. A surgeon and theatre staff will not be bullied or coerced into altering a planned list, nor should they. It will make you look a bit deluded and also cause unnecessary agrivation for staff trying to do their job looking after patients who have not been cancelled. Hopefully you will get your surgery soon 🙏

My urgent heart surgery has been cancelled 3 times. November, March, and last week.
It's shit. It's soul destroying.
I feel your pain only too well.

What happens if a slot opens up due to an unforeseen situation with another patient?

The NHS staff are well aware that it'd be more cost effective to do OPs surgery now instead of waiting until she is more unwell. Do you think they don't know that? They'd do it if they could.

I don't think I've seen posters telling OP she's overreacting, have there been? She isn't overreacting, it must be torture to have to wait like this. But if there's no ITU bed for her, what can anyone do? The hospital, MP, press, none of them can change that there isn't a bed.

I personally think it's unhelpful to encourage OP to hassle the surgeon's admin or PALS or go to the media, as I think that's a waste of her energy and likely to cause her more frustration she doesn't need. But on the other hand maybe it helps her to feel she's doing everything she can, so it's a good thing.

Best wishes OP I really hope you get your surgery asap.

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!

The op clearly has no understanding of the need for Specialist care intra and post operatively.

Yes OP, what an idiot you are for posting "I want brain surgery on a whim and I know for a fact there is no specialist care required at all"!

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.

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