To cancel surgery? I don't feel safe in the NHS

[LittleMissSunshiner]

I'm due major surgery - radical hysterectomy, lymph node ectomy, colon / bowel patches or resection and other stuff. I'm also under ovarian cancer investigation so it's all for biopsy too.

Surgery was supposed to have happened this week but got cancelled on the day, after I'd been admitted, consented, prepped and was waiting to go down to theatre - a sudden situation of 'no beds' apparently, so I was sent home. I was in shock and trauma. I'm told by an NHS employee friend that most likely a significant number of relevant staff didn't start their work shift as expected on the day which creates 'no beds', however, I don't know that for sure. Nobody explained anything to me, I was just left sitting waiting to be taken to theatre and then four hours later told I'm cancelled and to go home.

I was re-booked for two weeks after arguing with them but clearly told the same thing 'can and will happen again on the day' in the words of the booking admin. It's so traumatic as I'm going to be incapacitated afterwards, need hospitalisation for a while and also have care needs. So I need to plan. The recovery time in total is quite long - a few months but the first few weeks will be really hard and I live alone.

Also upsetting, on the day, my surgeon did a total 180 on several key aspects of my diagnosis and surgery, which was surprising and shocking. None of this has been discussed, it was just hurriedly announced, and means there's going to be a procedure I feel really uncomfortable about - ureter / bladder stents. Following a series of recent scans the gynae team had ruled out the need for stents and said absolutely not necessary - that was only 10 days ago. I don't like the idea of stents as I have chronic anxiety and phobias relating to anything foreign inside my body (a mental health x PTSD x autism issue). I was so relieved to know this wasn't going to happen. Then on the surgery day, referring to same scans, my surgeon says absolutely 100% stents are necessary and will be inserted. She's the expert but I'm baffled as to why her account grossly conflicts with the decision of the entire multidisciplinary team who reviewed my case, of which I assumed she was a part but now it seems not.

Same time, surgeon said she'd reviewed my scans and tests and that my current diagnosis (stage 4/5 endometriosis) is totally incorrect and there is no endometriosis whatsoever but 'other issues' which she didn't say. I knew I didn't have endometriosis and have been arguing this the whole time. I was severely injured during a gynae procedure at a different hospital last year and have scar tissue / adhesions in the area of injury - the subsequent scarring was explained away as endometriosis (which I didn't previously have - I had been checked). So now I feel the surgeon is verifying what I already knew - whatever's going on is not endometriosis.

It's impossible to discuss or ask any questions as people in my surgical team were literally just running in the door, blurting stuff out, asking consent, and running off again. Surgeon refuses to communicate, just announces things. I sense that she's only giving limited time to the NHS and is probably doing a very basic minimal service with zero frills.

Also on the day I was repeatedly badgered by the surgery team to consenting to accept a blood transfusion during surgery in order to raise my iron levels - that was their request, to raise my iron levels. My iron levels and haemoglobin are currently totally fine and very healthy but in the past I've had iron infusions. So, I was confused. When I questioned this and asked why they couldn't just give me an iron infusion if need be, it turned out that the surgical team actually wanted to me to agree to a blood transfusion during or after surgery because of the likelihood of severe blood loss during surgery. Why didn't they just say that in the first place? I feel like it was a bit smoke and mirrors and again triggered my anxiety x M/H x autism x PTSD.

In the past I've been severely injured and harmed by the NHS twice in botched procedures and a situation of serious abuse. I saw a close family member die from mistreatment recently. I can see clearly the NHS is in a chaotic and dysfunctional state which makes it dangerous. So, I already have zero trust or faith but had decided to go ahead with this surgery as I'm prepared to take a gamble due to chronic pain and other symptoms.

Now, I wonder if this is a gamble too far? Should I just live with the pain and symptoms. I don't feel safe with the way I'm being treated. Everything seems so chaotic and disorganised, the facts are being changed all the time, I have no agency or information in order to give fully informed consent. The way I'm being treated is wholly unacceptable but no amount of complaints via PALS or my GP or direct to the team makes any improvement. There's been incidents of incompetence and maladministration all the way. Aside from the surgery team and tech staff, a lot of the nurses and admin team are absolute bitches in a way that's completely unnecessary. I'm not sure I can handle the stress, anxiety, and possible further injury.

Am I being unreasonable to think it's better to live with pain and other symptoms, a physical disability than have surgery in these circumstances?

the anaesthetist is always present at recovery. but you wouldn't remember as there is some amnesia around Anaesthesia. actually the sign of a good anaesthetist is that you don't remember them. you are right they don't see patients on the ward unless there are ongoing pain management issues they had complex surgery or they go to icu (which is run by anaesthesists).

Seriously, OP, I think you need to remove the cancelled surgery from your list of crimes by the NHS against you.

Repeated posters have confirmed this is something that happens frequently, through no fault of the NHS. Yes, it is disappointing to patients who have organised their lives/recovery around a specific date, but it is NOT personal.

Sorry to hear you are going through all this . I'm not sure why your NHS friend advised there were likely no beds due to short staffing . This I not always the case and in actual fact no beds.

As for the blood transfusion. Regardless of where you have your operation, they will discuss and prep you for a possible transfusion in the event something goes wrong and you suffer blood loss.

Honestly OP a lot of that reply was like looking in a mirror. I was misdiagnosed with BPD too - when I met with the psychiatrist for a second opinion she could only see one diagnostic criterion that I fit, and this is when I eventually discovered (in my mid-30s) that I'm autistic. My Trust (and I also work for them so that's been awkward!) also have an over-reliance on BPD diagnoses for those of us that don't fit into any of their boxes (anxiety, dysthimia and ASD here...a lot of which results from as you say complex trauma during childhood). I also attended the groups you mention and I'd come home and say to my mum 'but they're all mad!' and I knew it wasn't the right place for me...

So yes definitely makes sense!

But despite all of that I would still suggest trying to seek help for MH, yes it is a battle but I think from that it could also benefit you in terms of your surgery, whether that's altering how you see it or perhaps improving your pain, etc. - healthy mind, healthy body and all that.

While I honestly do hear your frustration (I also have the physical pain side of things with my endometriosis) there does seem to be quite a pattern of the way others treat you, or you perceive them to treat you. I understand how having ASD can make interactions more complex but I do think, as others have said, you are catastrophising at every turn and also adding others perceptions that aren't there.

It's true, a lot of people are going through this, so I find out.

I wish they'd have warned me it was something could happen instead of telling me I was first to go down the theatre and then leaving me sitting there waiting, and nobody came to tell me. I'll be severely injured and in need of high level care for many days afterwards, so it was a shock that a surgery to this extent could just be struck off. I had no idea my hospital has a problems with 'beds' or 'staffing' (whichever the truth I don't know)

I don't see how this surgery can be done next week either but maybe it will.

I think frequently cancelled surgery is actually appalling. I do blame the NHS. It absolutely should not be standard to psychologically, emotionally and logistically prepare for major surgery over and over for it just to be cancelled due to an urgent issue. The system should be able to cope with the urgent issues as they always arise. The NHs is not fit for purpose. In any other industry this wouldn’t be accepted.

Well done! you can now join the many thousands of others who also blame the NHS. instead of looking at the reasons why the NHS is under so much pressure such as inadequate funding and batshit government policies.

Oh I totally agree. I don’t blame the institution - I blame a million other things not least food companies that sell us shit to ruin our health.

I don't mean to be rude, but come on. You 'didn't know' that your hospital had issues with beds and staffing? Staffing issues have been in the news for months, if not years, and there are winter pressures on beds every single year. This isn't an exceptional or unexpected circumstance.

You probably were first, if that's what they've told you, but if they don't have the beds it doesn't matter whether you're first or last, they simply can't operate on you, and complex operations will have a high(ish) cancellation rate at the moment because of the high level of aftercare and the length of time in surgery.

Honestly, having cancer has stopped me trusting doctors as the "default setting".

I wasn't referred for scans and a biopsy when I should have been.

I wasn't informed of a more extensive surgery potentially stopping me from needing to irradiate half my torso.

I wasn't told about any of the risks of radiation until after I'd had the less invasive surgery that requires radiation to keep the reoccurrence rate low. I was told not to look things up myself.

I was told my surgery would be brought forward after my chemotherapy had to be cancelled due to hospitalising me twice - it wasn't and the gap between chemo and surgery was longer than it should have been. No explanation or apology.

I couldn't bring myself to sign off on radiation, leaving me with a likelihood of local reoccurrence of around 30-40%, and have had to ask to be referred for a preventative mastectomy on that breast and cross my fingers a) they'll do it and b)it doesn't come back in the meantime.

@BeethovenNinth yes let's blame the food companies and not the woeful underfunding from a government who can't tell their arse from their elbow. Nobody is forcing the general public to eat their 'shit' food... however anyone who can't afford to go private is having to put up with an NHS on its knees

No, of course I didn't know this. Why do you think I was in shock and trauma? Of course I hear the news about 'bed blockers' and no beds for long term care for the elderly etc or A&E being 'full' and ambulances going elsewhere. But I'm having a planned major complex surgery - in my vivid and clearly inaccurate imagination I thought that meant a bed was earmarked for me.

I've had multiple surgeries, even only recently, and none have ever been cancelled and I've never witnessed anyone have one cancelled. I do know a couple of people who have had surgeries repeatedly delayed by their consultant but they're what I would call not life threatening - such as knee / ankle etc - I know it's upsetting for those people it's not the same as a high risk health emergency.

I was phoned the evening before my surgery to check that I was definitely attending as they wanted to make sure I'll be there at 0700 to go ahead. The told me I was definitely 'confirmed'.

My surgery is extremely urgent as I say I'm on a 2WW ovarian cancer investigation (long since overshot by FOUR YEARS now) and a 4WW highest priority of urgent major surgery (also long since overshot).

I'm in chronic pain, chronic daily bleeding, having repeat infection, taking hormone treatments and certain medications that are not intended for daily use, my life is at risk and I can't function, I can barely walk up and down a couple of steps now. I was previously fit and healthy. I'm even gaining weight as I keep eating healthily so as not to get ill but am not able to exercise.

I was assured my surgery had been planned by the MDT team the week before, reviewed by the MDT team again on the day before. I had met with the entire surgical team on the morning who told me they were taking me right down first.

I was actually left sitting told to 'hold your finger there' with an alcohol wipe covering a site where the doctor had been trying to take blood as part of the pre surgery mandatory double check of blood group. Doctor went off to get a butterfly cannula. Never came back. Hours went by. Not one single nurse would speak to me. Four hours later I overheard my surgeon tell the staff to at least inform me my surgery must be rebooked. Had I not overheard her say that, I would have been sitting there til midnight as no one came to tell me. It was barbaric and cruel.

I'm going to be unable to walk after my surgery. I'm going to be on a morphine drip and in chronic pain, laid up in a terrible state needing nursing care for approx a week. I was in the belief that a bed was 'allocated' to my surgery not that I was in some kind of hey just turn up and see what happens on the day lottery.

Clearly what happened at my hospital is they were happy to do surgery 'day cases' as those people aren't needing a bed - they told me that. They're forced to take A&E emergencies and they can't throw a person out of hospital whose already in there. So I'm in the category of person who is the one they're playing a numbers game with - maybe there'll be a bed maybe there won't. I wonder how many times I'll have to turn up before I actually get a surgery? At least now I know when I go, it doesn't mean I'm having surgery.

Surely this is wasting the time of my surgeons themselves? There's three of them collaborating on my case and they have to be fully genned up on the procedures on the day and each come speak to me, consent me etc, and then ... nothing... my main surgeon even had a student with her that she's training up on one particular aspect of my surgery. I feel sorry for them that all the prep they do is utterly wasted.

I eat a very strictly healthy diet and live a healthy clean living lifestyle for the simple reason that I wish to avoid the NHS at all costs.

Unfortunately I'm stuck in this situation of needing this big surgery for various complex reasons, not least of which I was severely injured in what should have been a minor procedure last year and that means I can't walk away and forget about the whole thing - now half the contents of my insides have to be removed so that I can become mobile again and for biopsies.

All I want to do is walk away and forget about it. But I can't.

@LittleMissSunshiner I'm not sure if that last reply was meant to quote me... I was talking about the previous poster blaming food companies for the problems in the NHS. Nothing about your lifestyle

sorry, yes I understand :)