Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To cancel surgery? I don't feel safe in the NHS

165 replies

LittleMissSunshiner · 02/12/2023 00:58

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?

OP posts:
RudsyFarmer · 02/12/2023 08:50

You’ve got to weigh up your current situation with the potential for side effects post surgery. Is there anything you can do to improve your current situation without surgical intervention?

everythingthelighttouches · 02/12/2023 08:51

@EmmaEmerald

It does indeed seem that you and I have read the OP’s posts in a completely different way.

”why would you go ahead in these circumstances “

Why wouldn’t you have surgery recommended to you by your medical team?

Why do you think they are recommending this surgery?

One which they are recommending despite an extremely difficult and fractious interactions with the OP.
Despite having all their meetings with the OP recorded.
Despite the OP’s stated distrust and unhappiness at her treatment on the NHS. Threats of legal action.
Complaints of medical injury at a previous hospital.
Extensive involvement of PALS.

LittleMissSunshiner · 02/12/2023 08:53

Soontobe60 · 02/12/2023 08:33

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!

I bring someone with me to every single appointment. They make notes of who I'm speaking to etc and otherwise stay silent, unless there's something very serious. In the same way as bringing your partner or friend to an appointment.

I audio record the conversations for my own reasons and some to the stuff that gets said to me is completely unacceptable and the way I'm being treated it bizarre. If I wasn't doing that, I wouldn't be able to believe the way I'm being treated and the people who come with me also can't.

OP posts:
PinkCyclamens · 02/12/2023 08:54

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.

But your assumption is based on the idea that you WILL need extensive surgery.
That's the crux of your situation. You are still in the process of questioning what needs to be done.

I don't see how you can have looked into the cost of surgery and made that judgement. Those numbers are only possible once you know exactly what you are having done.

I'd be very reluctant to agree to the extensive surgery you have planned without a proper diagnosis.

You seem to say you're having surgery to try to rectify mistakes made before . Like adhesions.

I think you should spend time finding a consultant who is an expert in what you may need, pay for a private appt, and take it from there.

BubbleBubbleBubbleBubblePop · 02/12/2023 08:55

Soontobe60 · 02/12/2023 08:30

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!

I agree, an absolutely horrendous waste of NHS time and resources. And taking a friend to record a medical appointment. Good grief.

I get the idea that these accounts from the OP are extremely one sided and that we would get an entirely different account of how she has been conducting herself if the NHS were asked to give their side.

LittleMissSunshiner · 02/12/2023 08:56

RudsyFarmer · 02/12/2023 08:50

You’ve got to weigh up your current situation with the potential for side effects post surgery. Is there anything you can do to improve your current situation without surgical intervention?

No nothing, it's a surgical issue -or- live with constant pain and other issues.

I already follow an anti-inflammatory diet protocol 100% and try my best to be as healthy as possible in every way.

OP posts:
OhHowTheDogsStackUp · 02/12/2023 08:57

Soontobe60 · 02/12/2023 08:33

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!

I would highly recommend taking a friend with medical training with you to the hospital.

That's the only way I found out that I had been told lies to my face that my test results were insignificant. They suddenly stopped being insignificant when my friend piped up and introduced herself as a senior doctor from a different hospital.

And as for PP saying nurses aren't bitches - that's what I thought before I met some. They're not all like that, but far too many of them are.

An elderly relative of mine has already decided to die at home in peace rather than spend her last bit of time on earth being treated like a piece of shit on someone's shoe. I don't blame her one bit. I'd rather die earlier, too.

fulawitt · 02/12/2023 08:58

The NHS is your best and only option. Luckily you have an expert team who will take care of you. You went to have your operation hopeful. You are very upset about it being cancelled. It is infuriating. I hope that you can be rescheduled asap and be well OP.

LittleMissSunshiner · 02/12/2023 09:01

BubbleBubbleBubbleBubblePop · 02/12/2023 08:55

I agree, an absolutely horrendous waste of NHS time and resources. And taking a friend to record a medical appointment. Good grief.

I get the idea that these accounts from the OP are extremely one sided and that we would get an entirely different account of how she has been conducting herself if the NHS were asked to give their side.

Clearly you've never been severely abused by an institution.

I haven't 'threatened' the hospital I'm under with legal action - that is the previous hospital who severely injured me. I am entitled to take recourse for being left in a terrible injured state from a procedure that harmed me. That's between my solicitor and that hospital.

I openly write a note of whom I'm speaking to as I see a different person every time. I always bring someone with me, after taking best advice not to attend appointments alone - this has resulted in a marked improvement. I would advise anyone to do so and PALS and my GP advised me this.

OP posts:
LittleMissSunshiner · 02/12/2023 09:07

PinkCyclamens · 02/12/2023 08:54

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.

But your assumption is based on the idea that you WILL need extensive surgery.
That's the crux of your situation. You are still in the process of questioning what needs to be done.

I don't see how you can have looked into the cost of surgery and made that judgement. Those numbers are only possible once you know exactly what you are having done.

I'd be very reluctant to agree to the extensive surgery you have planned without a proper diagnosis.

You seem to say you're having surgery to try to rectify mistakes made before . Like adhesions.

I think you should spend time finding a consultant who is an expert in what you may need, pay for a private appt, and take it from there.

I do need extensive surgery - there's no denying that. Genito urinary surgeon, gynae surgeon, colo rectal surgeon to do the radical hysterectomy because of the scarring adhesions.

I can't afford to go private. I'm skint, I have no money for that whatsoever but a little bit of savings I could put as a downpayment, a loan company wouldn't lend me. I can't take insurance on a longstanding known about pre-existing issue. I've already researched and discussed this with my GPs and they said it would not be possible and some of them work in private care. Maybe there's some medical companies who would agree me to a payment plan?

OP posts:
knitnerd90 · 02/12/2023 09:09

I do think people are rushing to assume OP is anxious and unreasonable and this is because she mentioned her autism diagnosis.

The onus is on the clinicians to explain the diagnosis and treatment plan. If the patient does not understand, then the answer isn't to blame the patient. It is a failure on the part of the medical team. Yes, the NHS is under massive pressure, but it's vital that the patient understand what is going on and that doesn't seem to be the case here. They're throwing surprises at her and she hasn't got time to ask them to stop and explain.

I would switch hospitals and when you get an appointment, go in with a written list of questions. Don't let the surgeon rush you. Ask for a detailed explanation of the diagnosis, then have him or her take you through the proposed treatment plan and explain why they are doing it the way they are doing it. (Unfortunately the stereotypes of surgeons preferring their patients asleep so they don't need to explain has some basis in fact.)

There is research in public health (where I work) about patient communication, satisfaction, and outcomes. And frankly blaming patients with disabilities for communication failures is not acceptable.

therealcookiemonster · 02/12/2023 09:10

@LittleMissSunshiner you audio record your appointments? do you tell the doctor/nurse you are doing so? I can't imagine they would agree.

SwishSwashSwooshSwersh · 02/12/2023 09:13

my families experiences of the nhs are chaotic and slow too but with effective operations.

what do you know about the lead?

InAMess2023 · 02/12/2023 09:14

@therealcookiemonster I work in the NHS (mental health) and believe it or not there is a policy on this saying that it's perfectly ok and legal for patients to record their appointments. The clinician doesn't get a say whether or not it happens. The patient doesn't even have to say that they are doing it.

therealcookiemonster · 02/12/2023 09:19

InAMess2023 · 02/12/2023 09:14

@therealcookiemonster I work in the NHS (mental health) and believe it or not there is a policy on this saying that it's perfectly ok and legal for patients to record their appointments. The clinician doesn't get a say whether or not it happens. The patient doesn't even have to say that they are doing it.

!!!! that is crazy

I'm going to check the policy in our hospital. I certainly would feel very uncomfortable but thankfully never been in such a situation.

Crikeyisthatthetime · 02/12/2023 09:23

@LittleMissSunshiner I'm so sorry you are going through this, I can't advise but I absolutely believe you.
I've had a lot of encounters with hospitals, both NHS and private, and the only time I've been ignored, talked over and made to feel like I didn't exist, was in an NHS setting.
Mid-procedure while trying to tell the surgeon and nurses that something wasn't right, they literally ignored me and talked about their holidays. Luckily for me, the senior consultant came in and stopped what was happening. Many years later it still shocks me that it happened.
I won't have insurance for much longer and the thought of being reliant on the NHS is terrifying.
When I read posts minimising what you are experiencing, I know that they have no idea what can and does go on. Or they do know, because they are part of the problem.

LittleMissSunshiner · 02/12/2023 09:23

therealcookiemonster · 02/12/2023 09:10

@LittleMissSunshiner you audio record your appointments? do you tell the doctor/nurse you are doing so? I can't imagine they would agree.

Yes I do because in the past some of the things that have been said to me are unlawful abuse.

For example, I even had one doctor turn up to a prebooked appointment and quite literally pretend to be my consultant. This was witnessed by my friend who was with me and I did audio record this incident.

My consultant and her must have thought that I didn't know who she (my consultant) is and what she looks like. This type of treatment is terrifying and laughable in equal dose.

It is NOT unlawful to audio record conversations for your own personal use. Some people agree if asked, others don't, regardless it is always legal with or without consent as long as it's for personal only reference.

What the law states about audio recording anything is that it is unlawful to play that recording to another person or broadcast it or share it. It can be used as a memory prompt.

OP posts:
nluebackground · 02/12/2023 09:23

Hi OP
I have a health cashback plan for medical, optical stuff. They offer a service called 'Best Doctors' and you can get all your medical notes reviewed by a leading consultant (usually from the US). They meet as a team and draw up a proposal of what they think is going on.

One of my colleagues had a long running issue (much less complex than yours) but was in despair and being given massively conflicting advice. The BD service got to the bottom of it within a matter of weeks.

This isn't an advert...I've just heard good stuff about them and it might be worth a Google.

InAMess2023 · 02/12/2023 09:24

@therealcookiemonster there are a few concerns from staff and it's all linked into our CCTV policies etc (it's a secure hospital so forensic rather than just mental health issues) - I'm involved in a piece of work looking into it at the moment

MotherofWhippets81 · 02/12/2023 09:27

I had a similar experience to be honest with my hysterectomy (age 38). It was cancelled 4 times, they kept changing their mind about what they were doing, asked me ten minutes before surgery (which I didn't have that time in the end) if I was keeping my ovaries or not. When I asked what the pros/cons were they refused to offer any discussion it was 'up to me'. I asked not to have a spinal - the anaesthetist on the day insisted on one which then went wrong. The aftercare was shocking.

I needed spinal surgery this year and went private - it was amazing - I've been kept informed every step of the way, been spoken to like I'm not stupid - I know I was lucky to be able to get this on insurance.

If I was you I would pay an initial consultation with a consultant you like the look of and go from there - it might be that they will let you change to them under the NHS or they could give you a cost (it will be a lot but not hundreds of thousands) and go from there.

Wish you all the best.

LittleMissSunshiner · 02/12/2023 09:28

nluebackground · 02/12/2023 09:23

Hi OP
I have a health cashback plan for medical, optical stuff. They offer a service called 'Best Doctors' and you can get all your medical notes reviewed by a leading consultant (usually from the US). They meet as a team and draw up a proposal of what they think is going on.

One of my colleagues had a long running issue (much less complex than yours) but was in despair and being given massively conflicting advice. The BD service got to the bottom of it within a matter of weeks.

This isn't an advert...I've just heard good stuff about them and it might be worth a Google.

This is interesting to know, I'll look into this! Thanks

OP posts:
everythingthelighttouches · 02/12/2023 09:30

OP I’m sure the current hospital know you are trying/already(?) to take/taking legal action against the previous hospital.

Referring to the current case, on this thread, you said “ I also have a solicitor monitoring the case in the background (he's waiting for the surgical notes and biopsy results).”

Are the NHS are aware of this?

Badbadbunny · 02/12/2023 09:30

My OH has bone marrow cancer and was told he needed a stem cell transplant.

The haematologist first glibly mentioned it at the start of the first course of chemotherapy, just something like, "there'll be six rounds of chemotherapy and then you'll go to x hospital for a stem cell transplant", making it sound something minor. He asked what it was and how long he'd be there, but she said she didn't know! Which looking back was the first red flag.

Nothing more was said about really, despite seeing the haematologist monthly. After all the chemo, she just casually mentioned we'd get an appointment through from x hospital to go and meet the consultant and transplant team.

The appointment came through and we went (2 hours away!). It was a shambles. Out appointment time was 9-15 but we were still waiting at luncthime in an empty waiting room having watched all the other patients come, go in and go home again. We asked the receptionist and she just glibly said the consultant had gone for lunch but would be back in an "hour or so". At around 2pm, the waiting room started to fill again, and patients started going through, so we asked the receptionist again, and she just glibly fobbed us off again, so OH went to find one of the HCAs who were showing people through to ask. She knew all about him, and said they were waiting for the transplant co-ordinator who'd apparently been paged. At around 3pm, we were totally fed up, so he went back to both reception and the HCA, to ask what was going on and started to make a fuss. At around 4pm, we finally got into the consultant and he hadn't a clue why we were there, he had no file, apparently the transplant co-ordinator was part time and never worked that day! So it was a shambolic fiasco and we just went home, none the wiser.

A couple of months later, another appointment with the same guy. He'd now got a bit of a file, but all the blood tests, skeletal x-rays and MRI scans were now apparently "out of date" so he wanted them all doing again, but at his hospital, not our home town, so that was 3 more visits 2 hours away for exactly the same tests that had been done 10 months earlier!

Another couple of months passed and another consultant appointment, finally including the transplant co-ordinator. This was the first time that anyone had actually explained what the stem cell transplant entailed, which is basically a few weeks in hospital, extreme chemo which kills all cells, harvesting stem cells, lots of drugs as you've no immune system at all, and then a few months of "rehabilitation" to get you back to somewhere near normal. After all that, you're still on chemo drugs for life, there's a risk of dying during the treatment due to low immunity, and life expectancy after stem cell was still only a few years assuming it all went well!

OH wasn't happy, but he went along with it. We got a list of times for various hospital stays, tests, treatments, etc. As the time got closer, OH was getting more and more worried as neither the consultant nor transplant co-ordinator gave any confidence at all. The date of the first in-patient admission came and OH got there, admitted, and waited, and waited, and waited, day after day, nothing was happening, didn't even see the consultant, it was always "there's a delay, it'll be tomorrow" etc. He pointed out the schedule and that the next stages would have to be put back as the first stages hadn't happened, but no one cared. The second week he was there, they started to prep him, but he thought it was strange as they seemed to be prepping for stage 2 rather than the first stage (based on what the consultant had told him), so he asked to see the transplant co-ordinator (who'd apparently been on holiday), she came in, first time he'd seen her, and she assured him it was all going to plan, stage 2, etc., and looked aghast when he told her he'd not had stage 1 - she accused him of lying or getting confused and insisted he'd had it done! Luckily OH had the gumption to stick his ground and assertively told her he'd not had anything done since he'd been there. She checked the notes, went away, and came back a few hours later, tail between her legs, admitted he was right after all, and then made a big song and dance about how the whole schedule would need to be changed, and blamed him for not speaking up earlier!!

After that, he just discharged himself and told them to cancel the stem cell transplant. He had completely lost confidence in them - they were chaotic and when it's something really serious like stem cell transplant, it needs to be right and well organised.

He went back to original haematologist who didn't seem surprised, she just put him back on the long term "maintenance" dose of chemo, which he's been on for five years now, the same drugs he'd have been on if he'd had the stem cell transplant (if he'd lived and not been disabled by it), "bad" levels of cancer in his blood are still low. He's asked her a couple of times just what would have been the point of the stem cell transplant as he's lived 5 years anyway and cancer levels are still very low with being on the same maintenance drugs he'd have been on otherwise, but she can't really answer.

All I know is that OH is glad he didn't go through with it in the end. He may not have survived it, as it's serious enough when the doctors etc know what they're doing, but his experience was that they were a chaotic fiasco.

Fraaahnces · 02/12/2023 09:34

The blood transfusion consent will be to replace blood lost during the surgery. You are having a LOT done (big hugs) and it’s no wonder you’re anxious if nobody’s talking to you to explain what’s going on.

LittleMissSunshiner · 02/12/2023 09:36

everythingthelighttouches · 02/12/2023 09:30

OP I’m sure the current hospital know you are trying/already(?) to take/taking legal action against the previous hospital.

Referring to the current case, on this thread, you said “ I also have a solicitor monitoring the case in the background (he's waiting for the surgical notes and biopsy results).”

Are the NHS are aware of this?

Edited

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. My current hospital is not the one that perpetrated the harm.

They're two different trusts and the one I'm under can barely communicate within their own team so I doubt they're speaking within trusts.

Current hospital are aware of the severity of the injuries and they are aware these were caused at a different trust as obviously they're the ones now having to operate on the whole situation - which they didn't cause so I imagine they're not feeling super great about that. Plus the added risks the injures have now created to what would have been a straightforward hysterectomy and has turned into a whole other situation.

OP posts: