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?

I actually DO have a limp for life. An imposter operated on my hip - he wasn’t a surgeon, hell, he wasn’t even a doctor.
And now one of my legs is TWO INCHES SHORTER than the other and I’ve got pain for life.
He moved out of state and I’ll bet you a pound he’s performing surgeries wherever he is now.

I am sorry you are being messed about and that this is making you even more anxious at this difficult time.

If it’s any consolation the best surgeon I ever had was like this. I think I literally had 10 words out of her. Scurried off. Scurried back for another sentence. Never saw her on the other side. But my god her work was impeccable. Commented on by not just me but nearly every other person both health and non healthcare who has seen my body after. I hope to god I get her if I ever need another surgery.

I know. I wish I could tell you to just trust the doctors. I wish I could tell myself to just trust the doctors.

But when you realise trusting them can leave you with permanent injuries and permanent trauma, you can't get that naivety back.

I would be extremely worried after the way they're treating you. Blagging permission for a transfusion is scary enough on its own.

No that wouldn't happen as I have long term issues but not the sort that would make me collapse.

Obv the potential for ovarian cancer urgently needs checking out.

The other issues are simply chronic pain (from the scar tissue and adhesions where I was injured and the tissues have melded connecting a part of my bladder, gluing my left ovary to my uterus, and attaching my bowel / colon in a way that it's not supposed to be). This causes constant pain, restricted movement, ie limping, and bladder / urinary issues. Plus abnormal vaginal bleeding (light but daily non stop). As uncomfortable as all that is, it's nobody elses problem bar mine and wouldn't cause a problem for another person or society as a whole.

None of these things would create a crisis where I collapse and need an ambulance, also they're not going to worsen to the point of ridiculous as they're 'stable' issues just very uncomfortable.

OMG so sorry that's outrageous.

Can you believe here in the UK we had a psychiatrist working in London for something like 30 years and she was an imposter. She'd failed her basic medical degree but come to the UK and registered as a Psychiatrist. She got 7 years in prison!

God, you poor love. You absolutely aren’t being unreasonable. This is major major surgery for which you need to feel calm and safe. Your concerns relate to basic stuff.

make sure it isn’t ovarian cancer - definitely

then find out if there is any other way to help the adhesions. Whilst you go through pals or whatever it is - slowly if you need to and somewhere else.

Really sorry to hear you are going through this. It feels as though I’ve written this myself but for a different area/problem

ive had an issue which required emergency surgery (according toNICE guidelines & hospital policy) however I was discharged after 2 admissions. On the 3rd admission surgery performed but because it had been left too late I’d been left with complications that have caused me problem after problem and umpteen procedures that have also gone wrong.

i often wonder how this happened in the first place/why I didn’t say anything but I know the answer…..there was no chance. I would see a different consultant at ward round, who didn’t speak to me rather at me and their team, for about 15 seconds then they were gone.

on one occasion as I was talking they literally walked out of the room….
On Monday I needed abc, on Tuesday they’d say no you don’t it’s xyz.
on one occasion I was told my new and concerning post op symptom was completely normal.
I didn’t trust this so did some quick research to find it could indicate a life threatening post op problem. I called back and asked for a second opinion and lo and behold they wanted me in for emergency treatment.
what stopped me getting this for 1.5 week? No bed to admit me to? when I was finally given a date I was told to expect for it to be cancelled as they often are. Fortunately it wasn’t.

the trouble is there’s been no alternative. I’ve trusted the NHS wholly up until now and in other departments feel I’ve had top notch services.

i will however look for private now for future care as I feel I will have more of a choice in my care and even if it’s the same consultant as NHS, I imagine it’s in better conditions that will mean better outcomes

I think trust your gut and as a pp mentioned, explore options with a different trust if possible through GP and see how you feel about that x

That is horrible! Didn't the dang hospital check the records of this pretend M.D.?
Where did this happen and was there any punishment? Were you able to sue the doctor or hospital?

My last two times in the hospital were horrible, but nothing like what you and @LittleMissSunshiner have experienced. I am so sorry that the medical community has turned into this mess, everywhere.

Sorry for your pain and suffering but I think you should cancel the surgery. Unfortunately there are no guarantees that any surgery will make someone pain free and there’s the very real risk of complications - you could end up worse off physically with more scarring but also mentally with another procedure the nhs failed to get right. Is it worth the risk if you can tolerate the current level of pain and disability with analgesia etc?
In my experience no 2 surgeons will ever think and carry out even a knee replacement in the same way. 1 may look at the X-ray and decide you need a partial knee replacement while another surgeon may be less familiar with that technique and decide you need a full replacement. It sounds like you have seen a variety of different people both from the surgical and medical teams who have given you slightly different opinions, 1 would do a stent, 1 wouldn’t. Sadly there is no right or wrong answer here but the surgeon who will be operating has said stent so that is what is likely to happen if you proceed with her.
As it is not life threatening although it does sound debilitating, time is on your side. I would seek the opinion of another surgeon at another hospital if need be and ask your gp to refer you due to the lack of written communication from your current surgeon/care team, you simply haven’t been able to make an informed decision about your treatment and would like to seek another opinion.

Why would you be on mumsnet asking for medical advice or opinions on your health decisions. Good lord. Speak to your GP. Or better yet speak to PALS. You can let them know your concerns etc.

The first thing I would do op is to get the first available appointment with an experienced gynaecologist, who preferably has experience in bowel surgery. I say this way round because of the potential cancer.

These appointments cost maybe £300 for an initial consult. Get together any paperwork you have, write a detailed explanation of what the issues are and ask them if they can get back to you with a ballpark figure of the costs of such a surgery. I don’t think it will cost as much as you think tbh. Hundreds of thousands is the cost in the US.

I had a hysterectomy, everything removed including ovaries and cervix, endo adhesions, cancer screening on uterus. Larger 8 inch lateral incision. Cost 5 /6 years ago about 9k. I then had an incisional hernia down the length and botched mesh insertion through massive key hole cuts (🤯). which lengthened the incision. I then paid a top surgeon, the sort, who’d call on his Harley street mates to patch him up to correct. He cut me open more again and the scar is now 12 inches. We paid him about 5-5.5k and he booked 4 hours theatre time as removal of mesh can be tricky.

I wouldn’t completely remove myself from the nhs system. Maybe find a way to stall the surgery until you’ve had this appointment... if you’re lucky, you may get something this week. I would be asking the private surgeon their take on your nhs surgeon. Where does she practice and what blurb is there available on her at the local private hospitals?

EDIT Just seen the post above me. Yes, good idea, speak to PALS.

Given your obvious frustration and lack of trust in the NHS, it may be an idea for you to source an advocate who can, on your behalf, seek and obtain a second opinion.

IME, advocates are worth their weight in gold as they are calm, rational and tenacious when dealing with officials.

I can’t advise on your complicated medical needs as I’m not a doctor but I can say I’ve had urethra stents in under GA due to kidney stones blocking both urethras. They were literally life savers, in place until further treatment got rids of the stones. I wasn’t aware of them at all, I was put on a low ish dose antibiotics to reduce any infection. They were in for six weeks due to needing further treatment but they did their job and were taken out under a GA.
I’ve had a long surgical op of eight hours duration during which stents were put in to drain my urine output, taken out at the end of the op.

You have no faith in NHS and no understanding of winter pressures where people who present emergently require treatment and are the reason there is no elective bed or staff for you to be safely operated on. Yes. That’s likely to happen again at this time of year. I do not believe for one minute that unnecessary procedures are being suggested because the NHS is trying drastically to reduce what elective surgical work is required and will advocate medical management where possible. The waiting lists are huge. They do not need to do surgery if it’s not desperately required and they have to justify each and every case. I do believe your ASD is part of what is making you think everyone is poor at communicating and that all nurses you’ve mentioned are ‘bitches’. I have been a patient in many parts of NHS and always found staff overwhelmingly lovely. People do not do these jobs unless there is a real love of caring. So. Save the NHS and this service in particular from your inevitable complaints and displeasure and choose to do something about the way you are feeling before consenting to any procedure. Whether you request second opinions which you can do or whether you choose another provider or choose to use support services to aid communication so you feel adequately informed and prepared pre operatively.

Even if you go private it will likely be the same surgeons as in the NHS. If anything goes wrong you will be transferred back to the NHS. You're better off trying to get a different surgeon who is willing to take the time to talk to you. I've had surgery multiple times under the NHS and never felt that the staff were anything but great so I do wonder how much your ASD is affecting some of the issues your having. I think an advocate sounds like an excellent idea too.

@LittleMissSunshiner I had a womb biopsy at The Nuffield hospital, you can ask you GP to refer you, it cost £450.00 and about £200.00 for the appointment. I understand this is a lot of money but is this an option, so at least the most pressing issue is dealt with while you decide about the other surgery options.

As others have said most private surgeons also work for the NHS, I was actually bumped up the NHS list by the private consultant for a hysterscopy.
I did want him to do the Hysterscopy but they only do then with a general anaesthetic which I didnt want, it would have cost £2750.00 if anyone wants that info. The consult was so much more in depth and not rushed. The last gynae NHS one I had two trainee staff in the room with no permission asked, the room was literally the size of a broom cupboard with no windows, so 4 staff and me having a womb biopsy done, afterwards he made it clear I had to get dressed and leave without sitting down and asking anything.

I think you are right to delay the big surgery its sounds chaotic and stressful.

i would put it off, ask for a discussion

Going private isn't always the answer. They are often linked in with the same services as the NHS anyway. OP could well end up with the same surgeon or consultant and be paying £1000's for the privilege.

OP I remember your previous thread. I am going to be very blunt, but please bear with me.

1. you clearly have had some poor experiences - surgical complications and incidences of poor communication. the NHS isn't perfect and sadly the levels of service are getting worse due to lack of staff etc. I myself have had poor care on multiple occasions so I sympathise
2. however, I think your ND status might make these complex communication scenarios more challenging. you are also suing the NHS - this means everyone is 'scared' to treat you and this might have complicated things.
3. you have anxiety around healthcare (understandable due to 1.) and seem to take a lot or things personally/the wrong way. ops are regularly cancelled due to lack of beds. I don't know what role your friend is in, but in 13 years of working in the NHS (11 in theatres), I've not seen ops being cancelled due to lack of staff, it's because there are too many admissions v no of beds. bed management is a huge thing and is not taken lightly. also complaining that things are not explained and then explained too much - not sure what you want them to do?
4. due to the complexity of what is happening to you, no one can know what will happen until they open you. there has to be an element of trust there. if you genuinely don't trust your surgeon/doctor - request a second opinion. whoever operates on you will have to make some decisions once they see what the situation is in there and how the surgery progresses. stents are really really not a big deal.
5. it's standard to consent patients for blood transfusions before most surgeries. sounds like the person was trying to explain it in a lot of detail (probably because they knew you were unhappy about how things were explained) and you might have got the wrong end of the stick.
6. no surgical consultants don't provide a 'no frills' service for the NHS. the vast majority are incredibly dedicated. and no doctors or nurses are 'targeting you because you are vulnerable'. unless you have been treated by someone like Lucy letby- people like these are incredibly rare. I think information gaps are very common and mistakes also happen - but no one is out to get you.
7. by all means go to PALS as they will help you navigate the system, but also be mindful of your own anxiety and ND which may be colouring your perspective.
8. final and most important point - don't take health advice from strangers on the Internet. keep going back to your doctors for answers.

I also agree with the above points - I also mentioned by a PP, ask PALS at the hospital to see if your file / proposed treatment can be reviewed. Sorry your going through this - must be very hard.

What going private does offer you - more staff and time to talk treatments through without feeling rushed. Also the aftercare was more robust for my treatment. I love the NHS and what it should be (with the proper funding) - but the aftercare I've experienced has been lacking. Obviously you have to be able to afford it.

Are you anticipated to need to recover in ITU- big bowel operations require this,
I don’t know if yours does. If so this is a
Common reason of cancellations as can’t predict availability. It’s very tough and frustrating for all but doesn’t mean you aren’t safe. Sounds like you’ve lost trust in the team - hard to understand why but sounds like miscommunication on both sides- if irreparable try to get a new team but it will lead to further waits

Would you rather have gone down if the staff couldn’t have cared for you? Go private if you want but the surgeon who does your operation will probably be an NHS one working privately anyway 🤷‍♀️

Safety. This is exactly why it was cancelled, because they want you to be safe. You need the bed in the right unit, not just any bed. Stents are good and really helpful and they don't stay, it's to help you recover quicker. They don't know what they will find when you are opened up so everyone is on deck and everything can be dealt with at once. That is good stuff. If you go private you will likely have the exact same surgeon/ team : you live in the same area. You are stressed out and they do not communicate well. I would go for it. Also it is going to be painful, but pain can be dealt with.

@LittleMissSunshiner it could result in crisis as the ovarian cyst could rupture.

Also you will not get it resolved here, you really should go back to them.