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 😭

I'm an icu nurse, icu beds work with a network of icu beds in mind.... So if we are full and an emergency comes in either the emergency is transfered out if stable or an existing stable icu patient is transfeted out to make room

YANBU to be pissed off that this is happening to you, but YWBVU to turn up and expect them to perform your op when they're not equipped to deal with you.
My DDs op to try to save her hearing was cancelled 4 times. I got nowhere with PALS and no-one at admissions/appointments gave a flying turd. So in desperation I called the consultants secretary and within the day her op had been swiftly rearranged for the following week with a promise that it would not be cancelled. Hospital administration are terrified of secretaries it seems.

I mean it's not the doctors fault. It's not even really management fault if there isn't enough capacity. Blame the govt for cutting beds and treating staff as dispensable and unimportant.
What good is making a fuss going to do? It's just rearranging deckchairs. If you go ahead someone else doesn't. If they do you don't. Let them prioritise according to need and capacity and don't cause more trouble for the shop floor workers.

Who said it was the doctors fault? Certainly not me.

If ever there were a time for me to make a fuss then it is now.

I would definitely lost my shit at the hospital by this point. Always remember he should shouts yhe loudest gets helped first. Keep making a fuss!!!!

It is beyond awful that this is happening to you, and to others, @Wndof, and I do not blame you for being pissed off, depressed and pessimistic.

I trained as a nurse back in the early 80s, and back then, even though the Conservative policies were starting to bite, and we had seen wards closed, there was still some give in the system, and cancellations were much less frequent than they are now. What successive governments have utterly failed to understand is that, if you have exactly the ‘right’ number of beds, with no spare capacity in the system, then any unexpected event is going to overwhelm your system.

And it doesn’t have to be a major event, like a strike or a pandemic or a major casualty event - it could just be someone not coming off the ventilator as soon as expected, so there isn’t an ICU bed for a patient who needs one after surgery. Or if a bunch of beds are being occupied by people who would be better in some sort of step down care (like the convalescent hospitals of the past) or who could be discharged to a care home (if there was a bed available) or to the community - but are waiting (and waiting) for a care package to be put into place, so people in HDU can’t step down to those beds, and when any do free up, they are needed for patients waiting on trolleys in A&E - and lo and behold, there aren’t the beds for planned admissions for surgery.

We need more staff, more beds, more give in the system, more money in social care and community care - but that isn’t going to happen.

YANBU to be upset, but they won't do the operation without a bed which I'm guessing is an ICU one so Y would be BU to actually do that, although I suspect you won't really, you're just venting. I hope it gets sorted for you ASAP

I did go to the hospital early this afternoon but only to speak to PALS in person as I couldn't get through on the phone. I didn't pester the ward staff or anything like that.

I explained to PALS what had happened and they asked what it was I wanted them to do (not sarcastically)

I said I don't even know what they can do but I need some backing. They tried to call admissions to chase for an update and got no answer so said they'd send an email. That's about all they can do I think.

Contact the chief executive directly and make a complaint!

My FIL had the same. He wrote to MP and threatened to contact the media, made a big fuss and got his surgery within a week. I work in a hospital and the situstion is bad, however sometimes the loudest gets treatment. Time to get loud.

This is the reality of the NHS now - I work in a major teaching hospital. The years of chronic underfunding, followed by the shitshow of covid, has left us broken. What we would have called critical incident 10 years ago is our normal now. I dread to think what the winter will bring.

I'm sure it is extremely frightening and frustrating OP but I don't believe anyone is blocking your surgery because they CBA, or don't give a shit - it's in their interests as well as yours to get you operated on and on your way to recovery, and I don't think many people go into the NHS to let people down. All of the staff I've come across desperately want to do their best for patients, and work at capacity constantly in really tough conditions. And people burn out and leave, which puts yet more pressure on the services, which leads to more burning out and more leaving, etc etc
Bed manager is a very stressful and upsetting job a lot of the time, no one wants to have to call patients and cancel their needed treatment.

I'm sure you're not in a headspace to hear about how hard it is for the staff and I respect that, but I wanted to say it's not lack of caring about you ,or lack of effort on your behalf,that causes this situation to happen - it's years of the NHS being run into the ground. I hope you get your surgery soon.

I do acknowledge that it's not the result of a lack of care for patients and I actually do have sympathy for the NHS workers that have to deal with the fallout of the long term under funding.

I've always had nothing but respect for those working for the NHS. You/they have saved my life several times in the past and I have never forgotten it.

So operation aside, thank you for what you do - and I still fully support the strikes.

I hope things improve for all of our sakes. I read that the government were pledging an extra 200 million to enable the NHS to get ahead of winter. Too little too late I think. Will it even make a difference?

@Rewis How long ago was that? Who did he mention the press to?

Hi op. I had an aneurysm burst, it was the most scary time of our lives. Then 6 months to the day it burst again. They then found that I had 4 more and needed them treated! I went for my appointment, was already in the bed and they cancelled 15 mins before my op due to an emergency, I was so stressed but could only think that the person who needed them was in the same position as I was when mine burst, they saved my life and hopefully did the other person too.
I'm 12 years on now and I'm doing really well, thank goodness.
I know it's a real worry but try to stay calm, the stress will do you no good. You will get your appointment very soon and all will be good.
Wishing you all the luck in the world and my thoughts are with you. xxx

I did copy the CEO of Kings into my email. It went to him, PALS, My MP, the admissions coordinator and consultants P.A

@Thepollonator

My goodness, I'm so sorry. What an ordeal. It's incredible that you are here to tell the tale. What a trooper!

How frustrating that they cancelled 15 minutes before your surgery. That's what I'm mentally preparing for now too, I don't want to get my hopes up when I hear a date iykwim? It's crushing getting your hopes up isn't it.

I hope you don't mind me asking this, so feel free to PM if you'd rather answer privately, were you unconscious both times it burst? Did you have the multiples coiled or clipped? How has your recovery been and do you have any long term deficits.

Sorry for all of the questions. I'm just in awe. I don't think I've ever spoken to anybody who has lived through two ruptures. That gives me hope.

They have to treat the most emergency patient first. The capacity is limited so complaining doesn't really do anything apart from possibly putting you ahead of someone else who is also deemed to be in great need by nature of you being more vocal than them. Is that right or fair? I mean by all means ask to find out what's happening but suppose you have to trust they are prioritising within what is available and maybe lobbying govt.

That's very gracious of you OP, it must be really scary to be in your position.

I think sadly you're right re the extra funding - how is it going to help? It's not enough to build more wards with more capacity, and even if it was, they wouldn't be ready for winter and even if they were, how would that help if there are no nurses or doctors to staff them? And no care home beds to send the patients out to when they're better because there is no money to pay for a care package and no care workers to deliver it? Cynically I feel like it's just being given so the government can say ' look, we gave them millions and they're still shit', setting us up to fail. The fact that none of us can see a light at the end of the tunnel is possibly one of the worst parts, certainly for stress/morale.

I really just wanted you to know that the people on the ground really do care and want to give you the care you need.

I'm so glad that I have given you hope!
My first one was horrific, I wasn't unconscious but the lights were on but no one was home iyswim. I don't remember a thing from feeling really poorly to waking up in hospital 2 weeks later! The second one, I knew straight away what it was and I remember all of that, I said to my husband " I'm gonna die aren't I"
I had the first coiled and when it burst again I had it re coiled and a stenth put in the neck of it.
I then had the others done gradually about 6 months later.
My recovery was long but I'm now about 95% of my former self. I do blame all my silly faults on my 'poorlyness' it's nothing to do with age! 😅 (I'm 58)
It's absolutely amazing what they can do now so stay positive. When I had mine coiled the procedure was only about 15 years old so it will be even better now.
By the way when the paramedics came out to me when it burst they told my husband to give me a couple of Paracetamol! Fortunately he told them 'not a chance'
Anyway I have my 1st beautiful grandson now and I intend to be around for a long time!
Good luck! 😘😘

I used to manage Neurosurgery at another major trauma centre/neuro tertiary referral centre and it's one of the most challenged specialties in terms of bed capacity. As pp have said, it covers elective and non-elective pathways. Trauma demand is unpredictable, and the hospital will be taking patients from an absolutely enormous area. Neurosurgical patients are also unpredictable in terms of how they recover, so you can't always plan ahead that somebody will be ready to step out of ICU. There are also very few 'low priority' neurosurgical procedures, so you're often asking doctors to prioritise between a brain tumour and an aneurysm - not an easy call to make in comparison to eg. a hip replacement or a knee replacement.

I'm an ops manager and everyone feels the frustration. The surgeons will do anything at all to be able to operate, nobody takes cancelling an operation lightly at all. Having to sit down with someone and tell them you don't have a bed for them to recover in and all of the preparation, mental and practical, they've gone through has been pointless is pretty disheartening. It's usually the manager who has to deliver this message. It's frustrating to have patients in beds who you know would be better off cared for elsewhere, at home, in a nursing home, but because there's no funding or social care the discharge process is painfully slow. It's frustrating that you will have done everything you possibly can, explored every single avenue to create a bed. It's also frustrating to read answers on threads like this that blame doctors for not fighting hard enough, or going on strike, as if they train for 10+ years to decide they can't be bothered to perform surgery. I'm becoming better at letting the 'all managers are a waste of money' rhetoric slide off but it's especially disheartening to hear it when it comes from colleagues, like I've seen a few times on this thread.

What I'm really trying to say is that you need to channel your energy into politicising your experience. The NHS has been absolutely demolished over the past 10+ years. My hospital also declared an internal critical incident on Tuesday. A completely different part of the country, but we cancelled elective surgeries, left patients in ambulances in the car park, nursed people in corridors. This is the new reality. £200m of funding is going to do jack all to get us through the winter.

In terms of practical advice mine would be to contact your MP (CEOs still take note of complaints that go via MPs, although less and less so as disdain increases) and call your consultant's PA regularly. I would have said also that turning up at the hospital wouldn't have been the worst idea ever. Sometimes (rarely, but not never) things do go better than you predict and you end up with space. Sitting in a day room quietly with a book isn't going to get in anyone's way.

I'm so sorry this has been your experience. It's unacceptable. I hope you take some small amount of comfort from knowing that the people in the hospital will have done everything they could to get you into theatre and recovered safely.

OP, I'm so sorry that your op got cancelled. I can't imagine how frustrating, worrying and upsetting it is. As an HCP, I'm really glad you have contacted PALS. This will mean that they have to look into things for you, and hopefully update you promptly. It may also make the big bosses look into the matter more, or escalate the issues.

One thing though....ITU beds won't just have surgical patients in (NB I can't speak for KCH but I'm going to assume that it will be similar). Often there will be a whole mix of different patients. Example: I work in respiratory. I look after level 2 patients (HDU). If a patient deteriorates, then we need to beg for an ITU bed. There'll also be trauma patients/emergency admissions (from A+E) that may need an ITU bed. Often patients needing ITU/HDU will be transferred in from other hospitals (more the case for KCH/St Georges than us). The elective/planned surgical admissions would be bumped down the list of priorities because of e.g. the sick patient I need to transfer to ITU, or the trauma patient that needs the bed. In the same way, I can't keep beds free on my ward in case I get resp patients a few hours down the line that need one (wish I could!!): bed management will need to make sure patient flow through hospital is kept up to prevent A+E getting even more full, so we often have to accept outliers and people boarding in corridors. On the ward, we have people awaiting discharge or transfers to other wards, but no space/no suitable discharge destinations or care packages available. In the same way, ITU often need to step down patients but there aren't ward beds or Level 2 beds available. I honestly could cry for how things are. I promise we do care very much for patients, and really share their frustrations and upsets.

FWIW, with low staffing, we do escalate it and send incident reports about it. My colleagues and I have been a thorn in the side of senior management for months/years with regards to it as we can't stand by and say nothing.

I really hope that you get your op very soon. Wishing you all the very best and a safe/speedy resolution to this x

About 100 other people have said similar at this point. I don’t think telling someone with what likely feels like a ticking time bomb (which they can hear but not see the time on) to ‘lobby government’ is even slightly helpful or compassionate.

PALS are useless! I contacted them 2 months ago after my husband had waited over 4 months for the results of a biopsy following a colonoscopy for which he had waited for over a year. I left a detailed message of information required on an answerphone and they still haven't responded to me. He still hasn't had the results of the biopsy and it's almost two years since he was eventually able to see our GP who referred him. The whole system is wrecked and whilst I fully support the NHS staffs' pay claims it's unfair that the patient is the one that's really suffering

@Wndof

I'm so sorry to read your post and how horrific it must be for you right now

A relative had a physcotic breakdown 7 months ago and we are still awaiting a mental health assessment to this day.

Between a small group of family members and I don't even know how sometimes we have managed to keep the poorly member alive at times as they've jumped out of moving vehicles ,tried to climb out of windows,ran away etc etc it's absolutely terrifying when there's literally no back up and you get bounced around and never helped.

I'm not religious but I'm going to say a silent prayer to whoever up there may be that you get the surgery you need as soon as possible.

this is awful, I’m so so sorry you are going through this. I don’t have any advice but just wanted to send my best wishes. I cannot imagine what you are going through.

Neuro icu is v niche it can only take neuro pts (there's tons) so don't have the standard sick medical/cardiac patients to compete with

King's have a step down neuro hdu called kennier Wilson (that's def spelt wrong) - but the problem in neuro is recovery is often incredibly long in emergency cases so there isn't the quicker turn around that occurs in normal icu land