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?

Kindly OP I suggest you seek further mental health support/therapy about your health anxieties. I have ASD too and have severe endometriosis for which I've had 5 extensive surgeries and awaiting number 6. At least 3 have been cancelled last minute with only a brief and vague explanation. It is what it is - sometimes emergencies happen, no ICU beds available, etc. but I wouldn't say that it brought on any shock or trauma.

Also your point about the anaesthetist being very very young is interesting - given that they must have been in their late 20s at the very least I find this a strange comment to make?

I work in the NHS and absolutely there are bad eggs in every profession but the majority of staff are doing the best they can in a very bad situation (blame the government!). So to see that you're seemingly disparaging all staff is a little disheartening...

My husband has been very ill with sepsis as a result. of the local hospital not removing his gallbladder despite being extremely ill and in lots of pain. Due to complications he has been referred to another hospital. He has been told endless different things and doctors are often poorly informed. He has now paid to have it done privately. Expensive but so worth it. We have no confidence in the NHS at the moment. I would consider being referred to a different hospital or at least ask for a 2nd opinion. Good luck how ever you decide to proceed.

Thanks for this idea - I have been trying to get support for my M/H but to no avail, it's been a nightmare in fact. My GP is willing to help but she's being blocked by my CMHT. If you have any ideas I would be grateful. I am connected to some local community voluntary sector support groups but their influence doesn't reach into the NHS and I don't know what their rights / or not are.

Please can I ask why have you needed so many surgeries? I've been 'un-diagnosed' with Endo now but am led to believe this surgery I'm having is the one big event to removed all tissues and then I'm clear, unless cancer.

I do have abnormally high anxiety and trauma that I wouldn't expect others to have - I have experienced severe abuse and harm in NHS settings (due to issues relating to my childhood) and also injured twice in surgeries in adult life, so I have trauma and a lot of anxiety issues just even being anywhere in an NHS system and really would rather not need to step foot in a hospital - something I will be steering clear of once I've had surgery.

Indeed the anaesthetist looked extremely young and I've had a lot of surgeries so I'm used to the process, her age surprised me, the way she spoke was a bit off beam seemed v juvenile so that made me a bit scared. I assume she was qualified and fit for the job or was maybe sent 'on behalf' of the anaesthetist but that would be unusual. I'm not disparaging about all the staff, I never said that, I said the young ward nurses in this case were absolute bitches. In this instance they were, that was my experience on this occasion, I'm not going to lie about it to please people on the internet. I'd be devastated for anyone to be treated the way I was.

So sorry you've been through this @SALWARP2023

How did you set about finding out about going private?

I guess you can somehow afford it or sign up to a credit payment arrangement?

OP that sounds so stressful for you.

One thing I'm unclear on is have PALS replied? Or is there investigation still pending?

I do go private. Even for the likes of antibiotics. The NHS is abysmal. I started going private when I couldn’t even get a doctors appointment for a chest infection. Sadly, some private services have to be through a referral of a shitty nhs GP.

Hi, thank you, PALS acknowledged receipt of my email and said they'll get back to me and they also said they'd forwarded it to the department for comment or somesuch - but I'd already copied it to the admin of the team I'm under, ie it's not a stealth complaint!

It's very stressful mostly because I'll be unable to function for a while after the surgery apparently (requiring several days at least hospitalisation) and then I'll be really barely able to do much whilst I recover at home. Some people are of the opinion that I should be try find a respite / recovery home to go to for a few weeks.

But I had quite a few local friends notified and able / willing to help out. Now of course the date has changed and it's closer to xmas and several of them are no longer able to help at all. It's just stressful to have to consider these things when I've got no info.

@LittleMissSunshiner

Do you know why the CMHT have said no? Do they feel you need support they can't offer? I must admit things like CBT didn't ever help me with my anxiety but CAT was wonderful - could you look at a few private therapy sessions? Not cheap I know but cheaper than private surgery! Also the support groups can be good as they connect you with others going through the same.

Of course... so although each surgery has cleared the scar tissue at the time with endometriosis it does come back over time hence the need for a repeat operation. My next step will be a hysterectomy but even that might not solve it altogether. But normal scar tissue (not endometriosis) should not reappear - although obviously each surgery itself will cause some scarring.

I'm sorry if I appeared harsh in my previous comment, I'm a trauma survivor too but not relating to health issues so I do get it now that you have explained your childhood experience. And absolutely concur that some NHS nurses can be awful - also experienced that myself but thankfully they're in the minority. I think those of us on the spectrum though do sometimes see things from others that are maybe not there due to our automatic disposition to 'protect' ourselves.

The only other advice I can give apart from please keep trying to access help/support is to try and ask as many questions as possible if you feel something isn't clear - believe me I think sometimes experienced doctors, especially consultants, forget that not everyone knows their subject matter as well as they do!

@InAMess2023

Thank you - it's OK and I know how it's frustrating reading my stuff sometimes (I get that feedback LOL)

Re mental health, they had me wrongly diagnosed with BPD, I do not have and have never had BPD, I don't meet the diagnostic criteria. I do come from a background of trauma and abuse so apparently most people in M/H service see that as fit to decide I have BPD when I don't, especially as female. I was never formally diagnosed by any psychiatrist with BPD but with anxiety, anhedonia, depression, complex trauma (not a formal dx as it still 'doesn't exist') and am currently awaiting full dx of ASD, having past the first parts in flying colours. I think the fact I have always been autistic since birth probably explains why I didn't end up with BPD as I wasn't processing situations in a neurotypical way in the first place and therefore my reactions and responses were not the same as people with BPD. If that makes sense at all?

Having the childhood and horror that I had, the M/H team 'decide' twice that treatment for BPD will be the right thing but it wasn't. It was terrifying for me being in a room full of people who do not process the world or situations the same way I do and hearing them openly discuss how they had reacted to perceived slights with (planned!) rage and violence. I was also like a lump of meat in a shark tank and of course rounded up on for rage attacks when I felt I was saying something moderately 'helpful'.

So, twice, I felt no choice but to leave these BPD groups. Which cost the NHS an absolute fortune to place me in no doubt. Twice I pointed out explicitly that I'd been harmed by the experience and been victimised by abusive people. Twice I pointed out the error in thinking that had landed me in the group and this was in fact misdiagnosis (sort of, as there had been no diagnosis) and mistreatment resulting in me being abused and harmed. Obviously that type of talk goes down like a lead balloon.

Part of my autism is that I'm just speaking my truth and accidentally rubbing all the wrong people in authority up the wrong way. So now NHS M/H won't touch me with someone else's bargepole. I'm quite literally refused assistance from the Crisis Team, the Core Team, the IAPT team, I have been point blank refused referral for psychiatric dx but am awaiting the final full assessment of ASD next year. I am not allowed to self-refer to any of my local authority services (they refuse me) and my GP has been told in writing by every faculty not to ever refer me to them.

I had a formal complaint about this but it was stone-walled and never replied to by my local trust, I then delayed in referring to the Ombudsman due to some awful life events and due to the severity of my gynae issues (I was injured in a surgery last year) and needed corrective surgery, now waiting for this 'big' surgery. I was dismissed for being out of time by the Ombudsman so nobody ever replied. I made a second complaint and am being stone-walled again with the exception that a psychiatrist I have not ever once met and who doesn't know me wrote that he is 'satisfied' I have BPD.

I have an advocate (finally!) ringing me on Tuesday. But basically the NHS has nothing for me. I accept this. I saw them abuse and literally kill my mother so I'm not a fan of NHS M/H services either. I realise this level of hostility and repeat trauma is reaching pathalogical heights with me now but I've been harmed after harmed after harmed by the NHS since infancy and it's probably best we all just stay away from one another so I can get the right help and recover!

Meantime, I've got to try and get through this surgery at the very least to determine if I have ovarian cancer or not and hopefully to do the jobs described - radical hysterectomy + scar / adhesion removal + lymph node removal + colon resection + bladder stents. It's a bumpy ride but I'm starting to accept this is going to happen (in the NHS's own good time when they have a bed and perhaps not even on the 13th) and I am just going to have to deal with the arising shock, trauma, struggle.

Regarding not being clear on things. I realise I need to abandon the concept of 'being clear'. For example:

My surgeon told me many months ago I need radical hysterectomy + colon resection.

She told me this in a one minute conversation. She said when I do your surgery it will be alongside a colorectal surgeon, I will take your uterus, fallopian tubes, ovaries, cervix, scrape out scar tissue and other tissues and they will do the colon work.

She then ran off to respond to A&E emergency bleepers. OK. Information received but no detail or discussion, was quite shocked and no-one to speak to about this. My neighbour attended and is my witness and she was more shocked than I, having worked for the NHS for 35 years herself.

Subsequently had multiple MRIs and CT scans but with no feedback or discussions.

I was made an appt with a consultant who told me she didn't know why I was there but probably as she'd be overseeing the removal of my 'bladder stents'. She gave me a one minute announcement of gruesome info about 'peeling and stripping my ureters' which will be done by a genito urinary surgeon on the day and she will oversee 'pulling the tubes out' a few weeks later.

This was new info and I was shocked but she refused to discuss and had me removed by three nurses on the pretext of needing an 'urgent blood pressure test' (obv I didn't she just wanted me moved along). My friend attended with me and is my witness and again, she was more stunned than me and we both felt a bit sickly about the stripped and peeled ureter tubes and didn't know what to make of the whole thing really!

I later made an informal complaint to the gynae team to point out that no-one had actually told me in more than two tiny one minute chunks what my surgery is all about, how it will be done or what the implications are. I asked how am I supposed to sign informed consent on the day?

So I was made an appt with a consultant who explained briefly they can't actually say as it's far too complex and needs decision making at the time of the surgery once they're 'in there'. She said I'll need to be in hospital at least 4/5 days and longer depending on the colo-rectal stuff. Seemed like a very experienced and knowledgeable person so despite the brevity of the conversation, I felt reassured.

Then I was referred for the wrong surgery at the wrong hospital - for a day patient outpatient laparoscopic hysterectomy. That referral was made by my own surgeon! I was confused. Because I flagged up that this didn't sound right the surgery booking woman cancelled the request and at that point I had no surgery booking referral at all - I was out of any system. I had to complain about that via my GP.

Then I was informed that yes, it was a mistaken referral, I need complex MDT surgery at my local hospital - a date was set, the 29th Nov just gone.

They sent me for fresh CT scans and reviewed my case in their big MDT meeting, following which declared bladder stents was an error and definitely not required. I was glad about that!

Come the day of the surgery (which didn't happen because no beds) my gynae surgeon declared two significant things - I am absolutely most definitely in need of bladder stents and I absolutely do not have any form of endometriosis. She had just reviewed my scans with 'her' team and this is what they're doing - I believe 'her' team are probably way over and above qualified to make this decision and they're all experienced and long time surgeons. She dropped this info in a 30 second flying visit whilst I was being prepped for surgery and there was no possibility of discussion.

Later, after my surgery was cancelled because no beds, I bumped into my surgeon in corridor and asked my surgeon in a 20 second conversation why the story of what needs doing keeps changing and I don't recall what she said but it was kinda angry-ish. I get that this is me and my autistic questions doing people's head in. She re-directed the conversation to me agreeing to come back in two weeks and that was that. At this point I was starving hungry, thirsty, and hadn't slept for two days. So I wasn't fully functional. Now I have no point of contact and no-one to ask anything about. I felt confused, shocked, a bit unsafe = my issues coming out.

I have now decided after the input on this thread and the thoughts that have arisen internally that I shall just have to 'go with the flow' and abandon all hope of being told in advance what's happening, how it's going to affect me and what my recovery needs will be (ie stents etc).

Main thing is to get the whole lot out and get it sent for biopsy / histology urgently as I could in all likelihood have cancer spreading in my abdomen.

There's a huge gap between what I'd expect and desire to be treated like and how I am literally being treated but I shall have to suck it up or cancel and I've decided not to cancel.

It sounds like you have a decent GP, at least?

@LittleMissSunshiner have you tried contacting the consultant's secretary? They can often get the information that you need (probably by badgering them in a way that we patients can't).
If you haven't done that please try it. Write down what you want to know first in bullet form, and be ready to write down any answers. They might be prepared to ring you back, or may ask you to ring them back for the answers.

Yes, she's very nice and I like her and can speak freely to her. And she listens and believes.

Altho I'm not sure she has much if any influence or effect at least she's a witness and gets it. Also my solicitor believes me.

As an abuse survivor, it's the not believing bit I struggle with the most when people can't / won't / don't because of their own perceptions of reality being too challenged. It's too traumatic for some people to consider that systems have collapsed or don't work or have gone dysfunctionally harmful. Me, I live in a Kafka-esque world of every system fails me but that's my sh*t to deal with and I do have humour still left.

Thank you I will try this before now and 13th.

I did send an email to the MDT secretary copied to PALS altho I'm not sure there's much she can say / do.

My primary consultant (gynae surgeon) appears to be quite a random and eccentric person - I'm not sure anyone gets any sense out of her and she did tell me directly herself that she doesn't communicate or write (not sure what to make of that!?) but I believe she's an excellent surgeon.

That's worth its weight in gold. It's good to have at least one part of the NHS functioning in a way that's beneficial. She sounds really lovely!

I have a great GP surgery too. Some of the doctors can be a bit unhelpful, but the receptionists are absolutely brilliant. They're so understanding when I can't do some things. They really go above and beyond for me too.

I completely understand the feeling of not being believed being very triggering. It is for me too. People genuinely don't want to hear that the NHS is actively harming its patients.

I get so panicked about being in a hospital now. Even the thought of it can make me feel really frightened.

“I only found this out when the anaesthetist (who was oddly combative and even more oddly very very young) said to me we have you registered as autistic and is there anything we can do to assist you in this? At the time I was literally being processed to go down for general anaesthetic so I was kind of baffled by the question as I was due to be unconscious for three or four hours. I said that I have issues with the mask being clamped over my mouth.”

This whole statement is so very unreasonable. Anaesthetist was trying to see how they could help you better due to your autism - you were ‘baffled’ as didn’t see relevance if you were going to be unconscious, but then you give an example of why it actually was relevant them asking you, because you mentioning not liking the mask on your face! Poor anaesthetist can’t win.
The doctors don’t explain enough, then they explain too much but you think that is treating you like a child.

Someone asking how they can help you doesn’t sound at all ‘combative’ to me.

I’m sorry your surgery was cancelled so last minute, but aside from that It sounds like you are looking for issues at every encounter.

Thanks for this feedback.

Anaesthetist was combative IMO. I was very tired and cold, very quiet, just politely answering questions as they were asked so it def wasn't me.

I think I gave this one example but she asked if I had any loose teeth or caps. I said no. She then said in a very confrontational and argumentative way that she can clearly see I have missing teeth, as if to point out to me that I'm blatantly lying. I have three missing rear molar teeth, they don't have any dentures or fixtures or fittings, they're open gaps.

There were other issues. She was generally a bit off IMO, that's how I experienced her. Maybe my perception was skewy but I'm pretty used to interacting with a lot of different types of people, including anaesthetists. I never had this kind of hostile experience before. In this regard I'm very glad the surgery didn't go ahead and I seriously hope she's not my anaesthetist next time. If she is, I'll have to suck it up.

I was baffled and still am about the question re autism as her job is literally to keep me anaesthetised, she's not part of the before or after care team, I would never see her again. I've had enough surgeries to know that as soon as that job is done, I'll wake up in a different location. I've also had enough surgeries to not have had any questions about anaesthetic which seemed to grossly irritate her and she did make some snarky remark that if I am autistic I would have questions. Why would I have questions? I have had scores of surgeries.

I have a lot of questions but the only person I don't have them for is the anaesthetist!

I did think to say at the last minute that I struggle with the mask being fixed on my mouth whilst I'm still conscious to which she just glared at me like that is not a 'thing' and her colleague then jumped in after an awkward silence and asked if I would feel more able to hold it in place myself.

Something was off beam. Sorry I'm not going to placate people over the internet who a) weren't there and b) don't want to believe my account. I really hope it's not her next time.

I have been previously disabled in an NHS hospital by a surgeon who was too overburdened with the post pandemic caseload. He paralysed my arm and hand. He has now been made to retire and the health-care assistants at the hospital told me to get out of the ward asap for my own safety. It wasn't reassuring, and post-operative care has been a disaster. Now I have cancer and it is a rare sarcoma. I had surgery recently which was a re-do of previous surgery. The NHS got the diagnosis of cancer wrong a few years ago, took the tumour out, labelled it benign (by mistake) and when it regrew they misdiagnosed it again as benign. A private sector surgeon insisted on genetic testing which identified a rare cancer which would have got bigger and bigger over time. He said I should see him via his NHS clinic after the diagnosis, and on the day of the surgery they rang to cancel it. They rebooked me but they sent loads of people home in my pre-op ward due to staffing issues on the day I attended. I do believe there is chaos in the NHS at the moment and I also think staff are under terrible pressure. Mistakes do happen. If you have the means, go and see a private surgeon or gynaecologist. Years ago I had to fight to not have a hysterectomy, and eventually persuaded the surgeon to make an application to do endometrial resection instead. There is no harm in getting a second opinion, and a private consultant could refer you back into an NHS hospital of your choosing (and guided by their expert opinion). If you don't have the finances to find an appointment, see your GP and ask to be referred to another NHS hospital.

I think this may be an issue with how you're seeing her, not an issue with the doctor herself.

Anastasiologists are often involved in pain management before, during and after a surgery. If you needed an epidural after for example, it would be them who do it.

I think you've made the whole thing into a massive ordeal and now you're seeing doom at every step. I don't mean that in an unkind way but the doctor's age has nothing to do with how competent they are, and often imo younger docs are more informed on newer procedures.

Have you ever suffered serious and permanent harm through medical malpractice in the NHS? Have you met an extremely rude, unpleasant, and condescending member of staff at the NHS on several occasions.

Because if you haven't, you are speaking from a place of innocent conjecture.

Unfortunately, those of us who have been harmed, and had trauma caused by the NHS, are unable to share in your optimistic naivety.

Did you actually read what I wrote? I'm not commenting on the rest of the medical treatment, just this aspect.

Yes, I did. If OP says she wasn't being professional, I absolutely believe it. It's pretty common to be patronised to death in hospital.

She likely had a youthful face, which doesn't belie her incompetence, granted. But was she a dick? It sounds like it.

@QuestionableMouse I think you were baffled by her questions because judging by your responses you perhaps had a limited understanding of what an anaesthetic entails especially for a long surgery. ND patients can rightly become very distressed during the induction and recovery processes, its the anaesthetists role to minimise that distress. teeth are also sensitive topic, as if you had any loose, it can get into your lungs and kill you during an intubation. also the anaesthetist doesn't just knock the patient out and bugger off, there is a lot, a lot more to it. they and their team will ask you the same question over and over again, its boring and can be patronising - but that is their process. they are gearing up to do something incredibly stressful and risky so there are safety checks built in. tbf she might have had a poor bedside manner. no excuses for that and only you know that because you were there.

Oh I totally agree that by now I'm catastrophising every step of the way believe me you.

It has been an ordeal - over a four year one in which I still haven't had my 2WW ovarian cancer biopsy or my 4WW urgent surgery and been severely injured along the way. And the surgery that I was finally assured was happening with no shadow of a doubt was cancelled whilst I was waiting to be taken into theatre. So yes, I've lost the plot entirely at this point.

Only a lunatic would fail to be anxious and paranoid by this point. If I were to detail the details it would be far too long and boring of a post to read.

Doesn't mean I felt OK with the anaesthetist though, I didn't. Her age was the least of it tbh, it was the intense accusative questioning and trying to imply I'm lying or something that was off IMO. Could have lived without that on top of all the other madness.

I've had lots of surgery and never once met with the anaesthetist afterwards. By the time I'm in the recovery room, they're long gone and never to be seen again.

Maybe this one was planning on hanging around because I'll be needing morphine on demand so there is that - I've not had that level of pain management before.

ETA: Also you're right I think this is going to be the longest surgery I've ever had, especially if it gets complex beyond that which is expected. So there is that too.

She seemed a bit intense and weird. Maybe she's just scared of killing a person which is understandable and makes her far more human than some!