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Original poster

Doctors treat you differently when things go wrong

28 replies

Orangeblossom78 · 12/11/2019 11:32

A few years a ago I had a misdiagnosis of something serious and ended up needing lots of surgeries to save my life...after it became clear (all along they kept saying 'you seem young a healthy' and dismissing me as 'anxiety' when I in fact had sepsis due to neglect / failing to investigate further) they have gone all odd and quiet and won't discuss it with me.

I tried gently asking for an explanation, after such follow up, via PALs. But they tried contacting the consultants and asking them and they had no reply. AIBU or if things go wrong, it seems to me they 'close ranks' and don't discuss it.

It's hard because an explanation, and looking at ways to stop this sort of thing happening again, would do much to help me get over what happened.

OP posts:

Original poster

Orangeblossom78 · 12/11/2019 11:33

Sorry meant to post in AIBU...

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ProfYaffle · 12/11/2019 11:41

ime it varies hugely between hospitals/departments etc

Dh has had appalling experiences at one hospital who reacted as you described. Consultants blandly pretending they don't know what we're talking about, PALS unable to get answers etc

Dd was in a different hospital, had a late diagnosis rather than a mis-diagnosis with nearly fatal results. The consultant reacted very differently, was open that he should have seen it/treated earlier. Said he would always wonder why he took the course of action he did. Moved heaven and earth after that to get her the best care.

It makes a huge difference to the ability to accept/move on.

Original poster

Orangeblossom78 · 12/11/2019 11:51

Yes it does. The worst (and strangest) one was a follow up for a surgery afterwards..had this guy who said he was a 'stand in' surgeon..there was no copy of the letter afterwards either, but he was so dismissive and defensive he even started talking about all sorts of other stuff such as my other family members treatment for something else and saying oh, 'methotrexate doesn't cause birth defects in babies' (it does. the consultant had advised stopping taking it prior to trying for a baby)

So, something totally unrelated but he kept going on about that and not the actual surgery that I had had! And yes it makes it worse and makes you not trust them

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1984isnow · 12/11/2019 11:59

This hasn't happened to me personally, but to my DP and an elderly relative, and I agree.

My DP was misdiagnosed a few years ago, and treated for the wrong thing for about a 18 or so months. We kept telling them the treatment was making a difference, until eventually we went through PALS. The consultant in the meeting completely denied him ever being given the diagnosis, they were just ruling it out with treatment (for over a year?).

I asked him to read the information from a particular appointment, which we had the discharge papers for, and it quite clearly said 'diagnosis X', not suspected. He just said oh, right and carried on with a different conversation.

With my elderly relative, she was taken into A&E then admitted to a ward. Diagnosed with pneumonia and sepsis, so for the first few days that's what was being discussed. One day, the member of staff started talking about her heart failure, and I asked what she meant. Asked about the pneumonia and sepsis a few times, was ignored and she just kept staring at paperwork, and we sat there in silence for a few minutes. Eventually she went back to talking about the heart failure, didn't even acknowledge my questions.

ProfYaffle · 12/11/2019 12:29

YY, very similar here too.

Dh asked one Consultant why a certain thing hadn't been picked up over a period of years 'oh I don't know you'd have to ask whoever was looking after you at the time'

'that was you'

" ...... "

Original poster

Orangeblossom78 · 12/11/2019 12:43

When I had sepsis they misdiagnosed it as anxiety- sent me home from the A & E...(it can look a bit like it I guess as makes you shaky and cold / confused)...I would like to tell them, the explain and have them say yes, we will check that out properly in future. I think they are more aware of sepsis now and yes, it may be harder to diagnose in the early stages.

But to even say, is it sepsis? (as they advise you to now) and be told 'no, if you had that you would be very sick, dear' and to then have it nearly kill you and need emergency surgery...and then on top not to have it discussed, is very hard.

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ProfYaffle · 12/11/2019 12:54

Yes, I totally recognise that feeling. Have you explored the possibility of having a de-brief of some sort through PALS? Counselling can be helpful too.

Original poster

Orangeblossom78 · 12/11/2019 13:14

Possibly, maybe that is an idea, or writing to them (find it hard to talk about as well) - I worry it might make them all defensive again. Maybe that is something I could look into. It was a few years ago and still on my mind. it says online they pick it up better now due to better awareness etc.

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WellErrr · 12/11/2019 13:17

Yes, in my experience this is exactly what they do.

And it’s very effective, as it leaves you with nowhere to go.

Original poster

Orangeblossom78 · 12/11/2019 13:50

You can get your records. it is now free to do this (used to be £50) however it is then up to you to interpret these...

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Hearhoovesthinkzebras · 12/11/2019 13:57

I actually had the opposite. I had a fairly minor procedure and have to have a major operation and now have a lifelong disability as a result. The Dr concerned has been faultless in the way that he has treated me since. He was incredibly upset when it happened. It wasn't his fault. It's a known, albeit rare, complication that does just sometimes happen. We had long talks about it with him telling me that he blames himself and me assuring him that I certainly don't blame him, that I agreed to the procedure knowing the risk of this happening and that I accept drs aren't miracle workers and that sometimes things just go wrong without anyone being to blame.

He has never hidden anything from us, gas given me copies of all of my notes, scans etc and has done everything possible to help me recover from this. In my mind, that is how drs should be when things go wrong.

ProfYaffle · 12/11/2019 13:59

Have you specifically asked pals about a de-brief rather than a complaint?

Have you tried pohwer ? They provide advocacy services for people making NHS complaints, they may be able to help.

Original poster

Orangeblossom78 · 12/11/2019 14:37

Prof no, I am unsure of the difference. I asked PALs about an explanation of the sepsis and how it related to the surgery and they told me they would ask the consultants by email but there was no reply...
so not sure if questioning PALs would help really? Is that a debrief, questioning etc?

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Mummymushroom · 12/11/2019 16:29

I feel this. I was brushed off as anxiety but later was something serious. But now they think that everything's about stress and anxiety which it isn't.

theboxfamilytree · 12/11/2019 16:33

Very similar happened to me and yes they do close ranks. They are only interested in protecting each other, not patients.

Original poster

Orangeblossom78 · 12/11/2019 16:42

I did talk with the GP who again seemed quite defensive but he did say when I voiced my concerns about the future 'well they will have your history (of surgery) so should take it seriously (if it happens again)

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feesh · 12/11/2019 17:13

Was the doctor foreign? I live in the Middle East and many professionals (particularly those from Asian cultures) here would rather die than admit wrong or inability to do something - it’s a significant and frustrating aspect of Asian culture. Saving face is considered to be more important than honesty. Just an idea. Might not be relevant in your case.

ProfYaffle · 12/11/2019 18:14

A de-brief is where you meet with a medic who will go through your notes with you and talk over what happened to give context etc. If you've had a traumatic experience it can sometimes help to make sense of what happened and why. Not all hospitals offer it but it could be helpful if it's available.

Original poster

Orangeblossom78 · 12/11/2019 18:40

Ok thanks, it does say in the section on asking for records you can ask to view them i think and have an explanation? I guess I could try not sure I trust them though! Thanks though

Interesting, I did have Asian doctors / surgeons in my final surgery and they were more open...(than the original UK ones) although they did want to discuss with my husband more than me. They were also quick to send comprehensive notes which were very clear.

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Original poster

Orangeblossom78 · 12/11/2019 18:41

Although there were no mistakes in the final surgery. They really helped.

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Oly4 · 12/11/2019 18:47

Going through PaLs isn’t the same as issuing the trust with a formal complaint, which you can do. You can also get a medical negligence solicitor to look at the case for free and if you have a case, seek compensation (this comes from a wider budget, not the hospital). A solicitor would get your records/all the info and it can be less stressful that way.

Walnutwhipster · 12/11/2019 18:57

Their dismissiveness is the reason I fought to get them to admit negligence. I was tired of being gas lit every time I went into hospital. Now I find I get treated very seriously when I have to go in.

Original poster

Orangeblossom78 · 13/11/2019 09:01

Herehooves I am sorry to hear of your problems but glad they helped in future. I hope you can maybe get any benefits you are entitled to e.g. PIP perhaps. Having good records / consultants can help with that.

I don't want to go down the negligence route as I don't like the lawyers making money out of the NHS / big charges etc. Sometimes the fees they get is more than the person's compensation, plus the stress of it all. they send you to appts all over the country etc (have a friend who did this) and it can go on for years and years. I also get PIP and ESA and they can claim that all back as well.

Anyway thank you for the replies, some food for thought. And to anyone else going through this. The main thing I struggle with now is trusting them in future.

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Hearhoovesthinkzebras · 13/11/2019 09:29

Thank you. Tbh the drs attitude really helped me to process what had happened and to heal. I hope that more drs adopt this attitude. I can sort of understand why they don't because they are afraid that they might get sued and that any acknowledgement of what went wrong might be used against them but for me, that doesn't help the patient. Being open and being willing to talk it through with the patient is so helpful and I'm sorry you didn't get that opportunity. I really recommend contacting PALS and asking for a debrief.

I don't claim pip simply because when I look at the very strict criteria I don't think I qualify. It would really help me to be able to reduce my hours at work but I can't do that for financial reasons so getting Pip would really help. It's just that my symptoms don't seem to be covered by the criteria that PIP requires.

I hope you get a resolution though OP. It's very hard dealing with medical complications and it takes a lot to be able to trust drs again.

Original poster

Orangeblossom78 · 13/11/2019 09:54

They just sent an email saying the consultants are going to write to me after looking at the records, so we'll see.

Yes i know what you mean about PIP. It is the prompting / supporting criteria, and his that fits with your symptoms, it sometimes makes it feel that if you are more independant it doesn't apply. And they can use things like driving / working against you (so although it is called personal independance payment it can seem like the opposite at times!

What i do know is that the criteria for it change all the time due to court cases and the like. For example, there has recently been a change about those on a special diet being now counted as therapy. Presumably the time taken preparing food, eating etc anyway, there is a site called Pipinfo which is up to date on these changes.

I mean 8 points in that section alone would qualify someone for the standard care rate of PIP. I do have depression / anxiety from my stuff anyway and they seem to focus on that as much as the physical problems sometimes, but I had to appeal to get my PIP.

Here is the site of you do try again. Maybe some specialist advice would help also. pipinfo.net

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