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?

Also went through it with my father. He went in with a suspected bowel blockage (he'd had an operation on his aeorta which the GP suspected may have caused a blockage due to scar tissue etc). Because the x-rays and scans didn't show a bowel blockage, the registrar/consultant dismissed that idea and started poking and prodding looking for other things. He spent weeks in hospital, tests for this and that, more x-rays, more scans, all the while getting weaker and weaker and then acquired a couple of hospital acquired infections and finally pneumonia. Different consultants came and went, scratching there heads, trying different things. He was being fed by having liquid food injected into his stomach and then sucked out again. When he was just about at death's door, they decided to open him up to see if they could see what was going on. After about 3 months languishing in the hospital bed! It turned out it WAS a bowel blockage, so they operated to unblock it! He survived but was never the same again. The bowel blockage operation went fine, but he was damaged in so many other ways because of their delays and cluelessness, i.e. permanent damage to his lungs from the pneumonia, general weakness meaning he had to use a wheelchair after months of not walking (after being fit and healthy beforehand, walking a few miles every day). All the signs were there, right from day 1, and the GP got it right, but the hospital doctors just dithered and faffed around trying to work it out, all the while just ignoring the fact that he was withering away in front of them!

Thanks OP, so just to clarify (it seems I may have misunderstood your earlier post), you do not have a solicitor looking into your current treatment at the current hospital?

This is almost an identical story to my Mums. She was then diagnosed with bowel cancer which no one had picked up on until it was so advanced she died 6 weeks later. Same with my Gran.

op I’m really sorry you are going through all this. I have complex multiple health issues (Addisons, lupus, pituitary issues, bladder issues, all sorts) and I genuinely feel the NHS doesn’t want to know if you are slightly more complex than the standard text book cases. I am in a very similar situation to you - waiting for surgery and I genuinely feel I may be making my health worse by having these things done.

People on this thread who are doubting your experiences are lucky. It’s clear they haven’t seen the dark side of the NHS, and there definitely is one.

I think so.

I was just baffled as to why they decided to talk around it in a fairly dishonest way. In the past I've had to fight for iron infusions (my body at the time couldn't absorb oral supplements due to celiac). So by asking me and specifically referring to iron only it felt coercive and manipulative. Would I like a blood transfusion for some iron as opposed to 'will I legally consent to a blood transfusion if needed due to blood loss during surgery?' are quite two different questions to my mind.

I've never had anyone tell me I'll lose a lot of blood during surgery before and have had quite a lot of procedures, so it's an added level of angst. I'm not keen on a blood transfusion but that's a whole nother issue - might make a thread about it.

No, my solicitor is not looking into the hospital I'm under or taking action against them.

He is however, waiting in the background for the biopsy / histology reports at the end of all this.

Why wouldn't they? People are only allowed to record for their own purposes, and if the medic is comfortable with the advice they are giving, what have they got to hide? Patients often forget important elements of what they are told so it makes sense for them to have a proper record.

I don't know if they know or not but if they do then it's not from me. Solicitor has only approached them for copies of all documents and is now holding off until surgery is done.

Does that mean you need to get on with the surgery? You only have three years from the date you became aware of possible negligence to begin proceedings, so it may not be a good idea to put yourself at the end of another waiting list.

@LittleMissSunshiner You said you'd already spoken to your GP about having it done privately - could you speak to her again about all your concerns?

She should be able to advocate on your behalf and at least get some more clarity/reassurance

Cancelled operations are awful. Very distressing. I just wanted to counter the people who suggest going private is the solution. If you have a dodgy knee, cataracts, bowel issues ie a single disciplinary problem then you will be able to find a private specialist. If your problem requires multiple disciplines it is not so easy/ can be really difficult or impossible. Can you get aprivate appointment with your surgeon so that they can at least explain to you and see you as a person.

They have to ask if you'd accept a blood transfusion as part of the surgical consent. It's a high risk procedure (and you have said you have had iron infusions before, therefore you are also high risk) so I'm guessing that's why they were encouraging you to accept. But ultimately it's your decision, but if you were to lose blood during the procedure it could be very dangerous for you if they cannot transfuse. They are trying to reduce the risk to you. They wouldn't give you iron infusions beforehand because as you said yourself your current iron levels are healthy so there's no indication for it.

Also your NHS colleague saying that staff not turning up is a reason for 'no beds' - Pure BS, sorry. I have never, ever heard that before, I work in the NHS and poor staffing is never a reason not to fill up beds, as I'm sure you've heard repeatedly for years in the news.

ETA just seen your post above re the blood tranfusions. Sadly maybe this was also their way of trying to simplify it for you to make sure you understand (but not fully understanding your autism) which is why they worded it differently. I totally understand why you'd be frustrated at this though

I'm not a surgeon and I have no idea whether OP's complaints are justified or not (sorry, OP, not saying they're not, just not in a position to judge). I can't say what she should or shouldn't do about surgery. But I'm really surprised by the number of posters who seem to think that it's OK for clinicians not to want to document or explain things because she's suing the NHS. That is not the case. I'm in a non-clinical regulated profession and have had clients who have sued colleagues elsewhere before. I would expect to be hauled up before my regulator and disciplined if I avoided advising those clients properly or documenting my advice routinely/upon request.

I do agree that the surgery cancellation specifically is much more likely to be about winter pressures than anything else, but having had various elective surgical procedures within the NHS I'm afraid I can also believe that this wasn't explained very well to the OP in the moment. And professionals do have to take extra care explaining decisions to patients who are ND and/or have anxiety.

Frankly, the OP's reactions as set out here are exactly why I do take time and care to explain to my clients exactly why I am advising as I do and what their options are if they disagree. I accept that NHS clinicians may no longer have time in reality to do that because of the extreme pressure on the service, but I think that's a terrible shame.

If you can I would pay the £500 or whatever it is to see a private consultant for confirmation that the NHS treatment plan is appropriate. You don't need to commit to private surgery (in some cases it wouldn't be offered as they tend not to have ICU capability).

This sounds horrendous, OP. I think you're right to be cautious. It all sounds very rushed, chaotic and fly-by-the-seat-of-their-pants. Could you put in a formal complaint to the hospital, which might make them sit up and deal with this more carefully, with a different surgeon?

Sorry all this has happened to you.

It sounds like you need, due to your various disabilities etc, reclassifying as a vulnerable adult. Messages/communication is getting messed up for whatever reason, and it sounds like you need more support to manage that side of your hospital experience.

I wouldn't want to have complex surgery at a private hospital as (god forbid) if anything goes wrong an NHS hospital has more resources .

Spoke to a member of my GP staff on the day when I was cancelled as I was in shock and trauma and my PTSD was severely triggered, they were helpful and empathic and suggested self management ideas and also had ideas about feeding back my experience.

Am speaking to my regular GP on Monday. She's fine but she's almost in the same situation as myself - that unfortunately the hospital staff involved are near unreachable and have given no clear points of contact. Also anything they say means nothing as the next time I'm there the story has changed or the appointment has been cancelled or someone I've never met before turns up and then claims there's been an error. It's v chaotic and for this reason no-one can really get a hook on it.

I will try again though. After the shock of being cancelled on the day of surgery and all that went with it (for example no-one told me) and the treatment was barbaric, I had decided to give up trying.

whateveryouwantmetosay · Today 01:51
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Do you have private insurance OP? Even without it, based on your history, I would be looking into having it done privately. Many people do go fund me and other types of money raising for this exact reason.”

Major surgery is far safer in an NHS teaching hospital than it is in private facilities. It’s often the same surgeons but the equipment and back up aren’t of the same standard. Private patients are often transferred from private hospitals to NHS when things go wrong.

That's very much an exception not the rule. Most private hospitals don't have those facilities.

Thanks for this info. Re the autism and the way I'm being spoken to, it's completely unacceptable.

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.

But then she went on to the most bizarre and long winded and simplistic explanation of what a General Anaesthetic is. But I've had many many GAs and only recent ones in the same hospital so she can see that, we'd discussed it. And she was talking to me as if I'm 5 years old. Part of my autism spectrum is that I have an exceptionally high IQ (not an exceptionally low one). I have sensory processing issues not comprehension issues.

Also she became quite sparring. She asked me if I had any lose teeth or crowns etc (a perfectly routine question) and I said 'no' (the truth) and she said very accusingly and as if she'd caught me out lying 'but I can see you have missing teeth' (also true). She said this as if to prove that I had lied to her. Well yes I have some missing rear teeth, that bears no relation to the question at hand.

With the iron she said would you like a blood transfusion to get your iron levels higher. Well that was just blatant coercion to get me to sign consent because in fact she had good reason to believe I will lose a lot of blood. What they should realise is that dealing with an autistic person, this kind of thing is a huge trigger and completely unhelpful. Instead of speaking to me as if I'm five years old and trying to call me out for being inaccurate in my answers.

By the end of the conversation with this anaesthetist I started to feel a strong dislike for her and didn't feel OK with her working on me. Also she kept trying to get me to commit to making statements about my diagnosis and treatment that are beyond me to make comment on - also no anaesthetist I've ever had has done that before - and as it turned out the surgeon then did a 180 on anyway. It was all a bit odd.

On reflection in this instance, I'm not sorry my surgery was cancelled as something wasn't right. Next time I'll have the opportunity to be less taken by surprise by all of this.

You need to read consultant Peter Duffy's book "Whistle In The Wind" about incompetence in the NHS, how they ignore it or cover it up, and how they hound out the whistle blowers.

Doctors/registrars/consultants seem to delay things or order extra tests to hide their own shortcomings, i.e. to pass the buck to the next random doctor/registrar/consultant the next day, or next appointment when they don't know themselves.

I think it's fair to say I won't be going private.

I don't have insurance, don't have significant savings or anyone I can loan off. I have a very low disposable income and these issues are pre-existing.

I shall probably take a gamble on the surgery on the 13th Dec if it's the same consultant surgery team who've been on my case the whole time, if I don't feel confused and mistreated and the stories don't keep changing again. If I feel those things, I'll ask for discussions and if they're refused, I'll leave. I can't consent to a surgery where the goalposts and info and planned events are shifting on the morning only 15 mins before I'm due to be taken down - and in direct contradiction to what the MDT said only one week prior. That doesn't feel safe.

I'm now thankful my surgery didn't take place last week as I didn't feel at all safe, I felt very confused, and I didn't feel in any position to consent to any of it. It's for the best there were 'no beds' (I believe posters who assure this isn't about staffing levels but about actual beds).

If the surgery doesn't go ahead on the 13th, I'll put the brakes on the whole thing, ask for discussion, ask for referral to another trust who can treat me holistically and consistently.

Two things I can do - ask GP to refer me for urgent second opinion within the NHS (will take months). Or I can take private consultation - take my CT scans and MRIs etc and ask for a second opinion and a written recommendation for my GP to refer me to a different trust. The slight problem with that is that I'm in a catch 22 - my current team have already stated I need major surgery and 'everything' removing as well as bladder stents and colon resection etc, so a different consultant may well say I don't understand what the problem is as they're doing 'everything' (which they kind of are).

Appreciate I've gone a bit circular here but I just want to say this thread has helped me process such a lot. I'm in no way trying to wind anyone up, diss the NHS (altho they've been awful in this instance), or come off as confusing - I am feeling very confused and working towards clarity.

Hi op
I'd think about getting a medical advocate. It's not you can't understand etc but it's lots to be dealing with when your not well and it's hard to advocate for yourself when your not well
https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/

Why would you be uncomfortable with a patient keeping a record of a consultation for later reference?

I think you need to also use terms like “Informed Consent” when being asked about procedures and having things explained to you. Ask them not to dumb anything down, and explain in detail why different procedures were to take place than you were originally told and had understood.

I'm so sorry this is happening to you, I can't imagine this stressful it must be.

I would write to PALs and copy in the chief executive and ask them how they intend to resolve this.