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?

Gather your questions and call the gynae secretary to ask them for you.

The only thing better about private is they usually won't cancel you last minute. But apart from that the NHS is superior. If you had a medical emergency private hospitals are not equipped to deal with that so you would end up in NHS A&E anyway.

the nhs is shit and not fit for purpose. I wouldn’t.

I have read all your posts here and I can't figure out what exactly the surgery if for.

Can you explain, simply @LittleMissSunshiner ?

I have private medical cover and have had for years . I can help you navigate what you might need if you can fund it.

First, you can have a consultation for around £250. You don't have to proceed with surgery but it will give you another opinion.

I also think you are maybe overestimating the cost of private surgery. One of my family had major abdominal surgery in London, at a very exclusive private hospital. It was covered by insurance but we see the fees, of course. It was £10K for the surgery (for cancer) and that included 4 days in the hospital. The surgeon was chosen by us, as being a world-expert.

Likewise, I have investigations for potentially serious gynae issues by a very eminent gynae who is a world-leader in cancer - investigations using ultrasound. They do this to avoid unnecessary surgery and also practice minimal access surgery for gynae cancer.

The point I am making is that you can access better care, if you are willing to travel. (too many people think they need to stay in their area.) My family who had cancer surgery went to London, which was a train journey, but it was better than having surgery by a less qualified dr, closer to home.

My advice is you delay surgery and see another specialist (there will be people here who can help with names as I could) and take it from there.

That isn't true.

The large private hospitals in London have ICU and are prepared for emergencies.

Dear @DreamTheMoors I am so very sorry that you have been treated so appallingly, and now have lifelong complications and pain. That man who abused you so terribly, and could have killed you, should be in prison! Are the police even looking for him? Are you in the US (I'm aware that lots of countries have 'States' which is why I am asking), and if you are - well actually, wherever you are - I hope that you have received a massive amount in compensation from the hospital he was employed by?

I have a couple of very painful conditions, but they are just what nature has given me, so I can't get compensation for them, but at least - as I am British and live in England - I get any treatment I have free at the point of contact, but of course the NHS is not a free benefit at all, tax payers pay a fortune for it, so I get really annoyed when even British people refer to it as a free service.

I hear some good things about some of the private hospitals in a few Countries in Western Europe, but apart from them, I don't know of any Country in the world where the vast majority of their citizens, who can't access private hospitals, are happy with the care they receive... so if you Dream, or anyone else, know of any consistently good Health Care Providers anywhere in the world, I would love to know about them, and to see if there are any obvious reasons explaining why their Health Service actually works?

Dear @LittleMissSunshiner we seem to share some very similar symptoms and diagnostical uncertainties, and at the moment I am waiting for the result of another test that I had done recently, to see if a mass they have seen on one of my other organs is cancerous or not. I am really terrified of having to be an inpatient in hospital again. In fact my carer knows that if I have another acute health episode (which are almost unbearably painful, even when I am on very strong medication - some of which I take daily), and they have to call an ambulance for me, I will refuse to get into it if the paramedic says they are going to take me to a certain hospital, bugger it, I will name it, it is 'Pinderfields' in Wakefield.

Nearly all of the staff that I have encountered there have been awful - except for the FY1s and 2s, and some of the Registrars. I currently mainly attend St James' in Leeds, which of course is far from perfect, but at least most of the staff I have come across whilst there (both when I am in in-patients and out-patients) have a good 'bedside' manner - they seem friendly and caring - which might not seem that important to a lay person on the street, but imo a good, to great attitude, makes all the difference to my mental health whilst I'm in hospital. I also believe that it helps me heal both a lot quicker, and to a better extent.

I am much too scared to give you advice on what I think your next actions should be OP, because I am very worried about giving you the wrong advice. So I think you should just go along with how you are feeling now, both instinctively and through the knowledge and experience you have been able to gain so far. I am sending you as much positive energy as I can muster, and a big gentle hug and some virtual 💐

Please let us know how you are as things progress Miss Sunshine, and if you feel up to mentioning the hospital where you have been treated so abysmally, that might help some of your fellow sufferers - on the other hand, if giving us their name would cause you any anxiety at all, then please don't tell us. 🩷 xx

@CommonOrNot Im guessing you always go private then? And if you had a life threatening emergency you'd ask to be left to die?

If people are having major surgery, there needs to be an open ITU bed available for them and that’s where the no beds issue arises.

Read the posts.

I agree with this sentiment but please believe me I'm constantly speaking to my GP about this - she's at a loss what to suggest - she also slightly created this situation herself by failing to push me forward for surgery in a timely manner by being quite passive and not advocating for me in as strong way as I needed. I also have a solicitor monitoring the case in the background (he's waiting for the surgical notes and biopsy results). I'm frequently writing email complaints to PALS and the gynae team themselves and ringing to try and speak to people. I've also found out some other advocacy agencies but none of it makes a jot of difference to how this particular hospital conduct themselves.

I think on consideration of what I've written here, I'm prob going to have to put this surgery on hold whilst I ask my GP to refer to a different trust -or- cancel.

Referring to nurses and admin staff as ‘complete bitches’ is not necessary. The vast majority are doing their jobs in exceptionally challenging circumstances.

Apart from that, I kindly suggest you seek some counselling to support your mental health as you seem to be catastrophising a great deal. Most people would be annoyed, frustrated, disappointed or even angry at being sent home when they were expecting to be operated on, but your reaction sounds extreme.

it’s your choice whether to return for your surgery, but it does sound like it’s necessary, and that if not carried out you will just become more unwell. Ending up having to be taken in as an emergency case is never as good as planned surgery.

I’m sorry you are having such a difficult time OP.

However,

Please have the complex and significant surgery that your medical team want you to have.

Even if you are feeling anxious about it.

Even though you are frustrated and feel communication has been poor.

Do not take medical advice from strangers on the internet, especially those who keep popping up to tell you to go private when you’ve already said you can’t afford it.

Very complex surgery is often not available privately. The private system is not a mirror of the nhs in terms of resources and specialist medicine teams. I have private insurance but opted back into the nhs for major abdominal surgery. There was no choice, really.

I'm constantly speaking to my GP about this - she's at a loss what to suggest - she also slightly created this situation herself by failing to push me forward for surgery in a timely manner by being quite passive and not advocating for me in as strong way as I needed. I also have a solicitor monitoring the case in the background (he's waiting for the surgical notes and biopsy results). I'm frequently writing email complaints to PALS and the gynae team themselves and ringing to try and speak to people
This sounds excessive and is taking up valuable time with health professionals!

@everythingthelighttouches "Please have the complex and significant surgery that your medical team want you to have."

why? She has been misinformed at every opportunity and now gets no information or false information.

why would you go ahead in these circumstances?

i can see many posters this morning haven't read what the OP said at all.

It is more likely that you needed an icu/hdu bed post op and that an emergency admission required it and no other patients were ready to be moved to a ward. It may have been that staffing levels were not available to support it. Either way you would surely not want to take that risk, as much as they. You could ask to be referred to a different hospital but that is likely to cause further delay and it sounds a specialist and complicated operation perhaps not performed everywhere. Hope your next appointment is more successful.

I had a friend with me who witnessed and recorded all this or I'm not sure I'd believe it even happened myself
Blimey! Who on earth takes someone to record their medical appointments! No wonder you were rushed out!

@Calamitousness I'm sorry but my only reactiom to your post is that:

You are either really naive, yet also prone to excess exaggeration, or you are part of the problem.

I just want to say to this, and the other posters who suggested it.

Yes, no way I cannot afford to go private. I have looked into it. It would be in the hundreds of thousands of pounds = a whole theatre full of people inc two or three surgeons and an anaesthetist, all the tech people, and a couple of weeks of nursing care. Otherwise I'd take a loan, agree to a payment schedule, etc.

Obviously I could attempt to pull some gofundme stunt but I'm not really a social media person, would have no idea how to push it forwards or promote it and can't imagine anyone would donate much. It's an idea though.

I will research to see if there's any private medical cover on my bank account or credit card or such like but am almost certain there isn't.

When this situation is over, I will certainly be registering with a private GP company such as Benenden.

Have you asked for a second opinion? I’m a bit confused by your posts but it seems highly unlikely they would do such extensive surgery without being very sure your had OC. If you can’t change surgeons, I would request a meeting and take someone with you to take notes of everything. Go with a long list of questions and do not sign a consent form for them to do the bits you aren’t comfortable with. You can absolutely have exploratory surgery without agreeing to have organs removed if they find something. That does mean going back for a second surgery but at least it is within your control and you know what is going on.

You’re wrong. What you’re describing CAN end up in a life threatening situation. My DF had extensive surgery for an AAA, resulting in bowel adhesions that affected him. He eventually ended up with a blocked bowel, was rushed into hospital and died 3 days later. It certainly wasn’t a good way for his life to end.

Well I can't win can I??

I'm accused of not complaining appropriately but I am so then I'm accused of being excessive.

I'm not being excessive. This is a series of very serious errors and mistakes and a bodily injury (diff hospital) going on over the last four years. I have taken up the injury / harm with a solicitor who is working on it and switched hospital trust.

Now at a diff hospital they make error after error - mostly admin (such as say fully discharging me in error when I'm supposed to be put on a 4WW surgery schedule). When an error of that magnitude is made I make a complaint to PALS, I do also ask me GP to write and find out what's going on if she will but she mostly doesn't. There's been so many errors that it's obvious the hospital is in a terrible state which is worrisome and I do point out where there's been a serious issue so that they can be aware / correct it.

You have complex physical health issues.
You also are ND which means communication is hard.

You've sued the NHS.
You've assumed cancelling surgery is unsafe when it's the exact opposite.

You are questioning standard care - stents, blood transfusions
Your GP is not a surgeon. Surgical decisions need to be made by surgeons not GP's

Take a deep breath and pause. Either decide that you trust your medical team or ask to be referred elsewhere.

Regardless, please ask for support from a LD/ ASD nurse.

I can see many posters have read exactly what she has written, and see someone who is very anxious and unhappy about things going on regarding her condition and treatment.
Anxiety can lead people to either being able to make decisions at all, or make poor decisions. When someone is in a heightened state of anxiety or suffering from PTSD it’s almost impossible to see the reality of a situation, as I’m sure you know.

None of us can tell you what the best thing to do is - none of us are privy to the ins and outs of your medical situation, as uour medical team would be. If you want to cancel then let them know as soon as possible so that someone else can be allocated your slot.

I'm terribly sorry, that's terrifying and I'm gutted for you to lose your partner so suddenly :(

My issues are gynae and the scarring / adhesions in the cavities between my uterus, intestines, ureter, and colon were caused by a serious injury during a surgery. However, obv I will need to check out whether something like you describe is possible. Also the ovarian cancer needs checking out urgently and ruling out.