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?

Ask your GP to refer you to another hospital. You can’t live with the pain. Sorry this happened to you.

It may not have been a staffing issue, planned surgeries get cancelled due to more acutes than expected all the time i.e car crash comes in and all of sudden you have four trauma cases that all need surgery.

However it sounds very confusing what you are being told. I would complain to the hospital and ask for another meeting with the surgeon and the MDT so you know for sure what procedures they are going to do and why.

They put stents in the ureter during some abdominal operations so there's less risk of injuring them and take them back out at the end.

Not saying that's the case for you, but that does happen and they don't get left in, it's just for the duration of the surgery.

I can see why you are feeling uneasy about proceding. The only urgency to my mind is the ovarian cancer possibility. Is there no way that can be investigated on its own, and less invasively?

Thanks for this info, seemingly the stents I am proposed would be for a few weeks and then removed, three weeks or so was the initial mention. But this was a very brief mention, by which I mean 30 second conversation, with a genito urinary consultant.

I met her for hm not even one minute as she said my appointment with her had been made in error, that she would only need to see me a few weeks after my surgery to supervise removal of bladder stents. I was like erm... what bladder stents, as this was news to me and I'd never heard of such a concept... at which point she urgently ushered me out of the office by which I mean to say she called three nurses and told them to urgently check my blood pressure and they whizzed me out the room so fast my feet didn't touch the floor and it was like it had never happened. I had a friend with me who witnessed and recorded all this or I'm not sure I'd believe it even happened myself.

Anyway I subsequently asked to be informed what my surgical procedures would be and was told absolutely not, no bladder stents, this was discussed in a big team meeting using recent three different sorts of MRIs and two types of CT scans including contrast dye and was declared an error. I was very relieved as I said above the idea of plastic tubes inside me makes me feel panicky - I'd be going out of my mind as if to whether they've moved or dislocated or got infected or blocked. I won't even have false teeth or dental implants, I have gaps, I had all my fillings taken out and replaced with ceramic, I can't cope with an IUD (I had to have it removed) or any vaccinations, that's how bad my OCD phobia situation is.

I appreciate I might have to have this temporary situation stents if I can agree to it but nobody's even discussed it with me (bar not even 30 seconds) and if they were to be a permanent idea, then I'd 100% decline the surgery. I don't know how I'd get through three weeks, I'd need daily sedation.

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.

Thank you, yes it can be investigated differently - by a laparoscopic procedure. I was meant to be on a 2WW for that since four years ago. My CA125 is persistently between approx 100 to 150 and I have large fluctuating cysts on my left ovary. I will ask my GP to refer me for this and put my 'big' surgery on hold with a view to cancelling it or being referred to a different hospital.

The gynae MDT said they can 'see' from the MRIs and CT scans that I don't have ovarian cancer. I dunno how anyone can see that and they've never put it in writing.

That was the initial procedure I was meant to be having done over four years ago now before covid lockdowns and then this whole insane situation broke out. I ended up severely injured by a different procedure that wasn't even a 'thing' and is outside of lawful medical practice so there's a solicitor on that aspect. It's been total madness the whole way. Nobody spends so much as one minute discussing anything with me, I'm just being fobbed off, rushed around, shunted around, and if I do see a consultant they either run me out of the door within one minute -or- they come rushing in the door, blurt a soundbite and run away again. I take people to my appointments with me, we take notes and recordings, so this can be proven, it's not just exaggeration or my perception.

Go private. You need to have confidence in what is being done to your body. You don't.

I'm so sorry you're having such a stressful time. Does the hospital have a specialist learning disability and autism team? My local hospital does, and several friends who are autistic (but don't have a learning disability) have found the team really helpful in supporting communication with surgeons and other clinicians and helping them to have things explained to them as much as they need to feel comfortable.

Sadly no, I don't have private healthcare or treatment (perhaps I should check with my Nationwide bank account whether they offer any frills in this regard?).

I had considered sinking my savings and a 'gofundme' but I'm sensing extensive gynae surgery costs in the hundreds of thousands and I don't really know many people. I spoke to my GP about this and she said no no no no. Other issue is what are my rights to be referred by the NHS for private treatment if they keep messing me around, conflicting, and cancelling my surgery.

There's no way my surgery is going ahead on the 13th IMO, the situation will not improve between now and then. Once a week, the gynae surgeries are slotted into a particular day surgical ward where they never want to create anything more than a day case. They call it gynae Weds. IMO that's why there were 'no beds' as the hospital admin put through all their day cases and refused to send down any case that would creating an overnight stay, then told my surgeon to stop working as there's no beds. She works in many hospitals, she does what she's told.

If you go private you quite often get the same surgeon as if you have the op under the NHS. The only difference is you can have it done quicker.

Good point - and apologies to the person who pointed this out to me before on a previous thread. I believe they may have a LD / ASD team or some form of advocacy scheme and will endeavour to squirrel out who this may be. I forgot about that idea.

At the same time they said to me 'were aware of your autism so please let us know how we can help or explain things clearly' then went on a long and boring patronising ramble about exactly what a general anaesthetic is (I've had countless anaesthetics) as if I was a 5 year old child, almost came with a picturebook and crayons. But failed to explain anything surgical sanely or rationally, were coercive and slightly dishonest, badly messed me around, then abandoned me and left me distraught and traumatised after cancelling surgery and not one single person came to tell me. I found out by overhearing my surgeon discussing me in the corridor - she had no idea I could hear her, I was in the loo. But no one actually ever told me. All of THAT triggers my ASD and PTSD, I don't need a five years olds explanation of anaesthesia.

If I were to go private or refer to a different hospital i would request a different surgeon at this point. The one I've got is frankly batshit crazy. I thought she was an eccentric genius, maybe she is maybe she isn't. But she's certainly been subject of an horrific law suit 8 years ago in which her conduct was absolutely beyond doubt absolutely unacceptable. So maybe she's just actually batshit crazy and a liar and smoke and mirrors person (which is what the law suit points toward).

OP

Are you the lady who posted about several surgeries the surgeon herself avoided discussing?

Maybe / probably, I've posted a couple of threads before now.

But yep she refuses to discuss anything and told me to tell my GP she 'doesn't write' and 'doesn't prescribe' - ie she will not put anything whatsoever in writing by way of summary letters or consultation notes to me, the hospital, or GP. ie she can and does issue one off prescriptions down to the hospital pharmacy and then tells me to tell my GP to repeat them -but- my GP cannot repeat a prescription that hasn't been put in writing by the consultant as some of the meds are controversial (hormone treatments) or highly dangerous and addicting (pain treatments).

Just this is already causing endless arguments between me, GP, Pharmacy, and the department that Cons works under - other members of staff at the hospital have to pick up the slack and do the admin / writing / confirming.

I think she's on some kamikaze stance with the NHS which is like hey I come in and operate on people, I do the surgery, I don't write letters or do reports or chat with people or hold consultations. That's how it seems.

I'm pretty sure it's you so I'm going to repeat my advice

Do not have the massive surgeries they are suggesting.

I see you have more information now but no explanations that justify all this.

I mentioned on the other thread, when I had virtually every bloody organ checked because they decided I had cancer (finally deciding I had liver cancer till a specialist threw out the case), they started off with deciding it must be ovarian and doing invasive gynae investigations.

Repeating myself but like you - I am sure I was targeted because they thought of me as "vulnerable" and unlikely to object.

Cross post
She doesn't put anything in writing to avoid it being used in a case against her.

A crowdfunder to get you seen privately sounds a good idea.

I remember a few of us describing our experiences in situations like this on your other thread. It will be too late after you've had several unnecessary surgeries.

Thank you @EmmaEmerald

I'm putting my surgery on hold until clarity is provided.

I want an urgent 2WW laparoscopic investigation of my left ovary to biopsy tissue.

I want a full gathering of my notes, reports, CT scans, MRI scans, ultrasounds, etc by the team. I want the crazy gynae woman off my case and I want clear concise and cohesive information and a plan for the surgery that is set out.

Also @EmmaEmerald so very sorry you went through that, honestly devastated for you. They killed my mum who was extremely vulnerable and what they did was barbaric and inhumane. She had another 20 years in front of her but she had a profound mental health problem and they fully took advantage.

What a nightmare for you, I don't blame you for being cautious.

I don't blame you. I'm absolutely terrified of the hospital after several instances of poor treatment. I've also been permanently injured. The last time I was in there, I wasn't even the patient and I still ended up with a nurse going nuts at me.

They want me to go in for a bunch of invasive tests at the moment. I've decided it's not worth the trauma and I'd rather just put up with the symptoms.

So sorry but this is the issue isn't it? I'd rather walk with a limp and pain in my left side and maybe that's me for the rest of my older life?

Do I want to come away from another confusing procedure to find out I've got complications from bladder stents (there are many), pain and injury from the surgery itself, possible complications to my colon / bowel, and also seemingly risk bleeding to death during the whole process judging by the way the surgery team keep banging on about how I'll be losing blood and needing transfusions (why? I never had this level of insistence that I'll be losing a lot of blood before). Also even transfusions are high risk. I could go from having issue a, b, c with pain and discomfort and end up with issue x, y, z ditto.

OP I really need to get some sleep but just wondering if they have dropped the bowel resection, for now, which I think they were suggesting before?

From your post, it looks like they have, but warnings of damage to bowel suggest they might be expecting to do that later?

Something is very very wrong here. I can come back to the thread tomorrow if it's any help.

Sorry for everyone who has suffered in the hands of bizarre medical procedures. It happens more than most realise.

Yep bowel resection is still on the cards and the colo rectal surgeon is in the surgical team. However, it was described as bowel and colon 'patching' in a very brief announcement on surgery day and I was like hang on this is a new word... They've also said there's no way they can say until I'm opened up, it's not being done keyhole, I'll have a big scar.

Anyway yes lets chat tomo! Night night.

So you could end up in a situation where someone has to call an ambulance for you then what choice would you have?

Or end up with a slow painful death

Yes I am being blunt but I always prefer to be in a frame of mind to make decisions for myself and not have others have to make them for me