Had sepsis and wasn't told?! Anyone else?

[kissmelittleass]

Long story short last October I had a uti, was given a three day antibiotic that didn't cure it Of course it was a weekend so thought I'd put up with it till the Monday!
Pressure pain got worse, pain started in my left side quite bad, I managed to fall asleep and woke up violently trying to be sick, felt out of it, shaking uncontrollably teeth chattering, dizzy. Doctor came out and was sent to a&e I was told the infection had gone to my kidney, ended up in hospital for two and a half weeks.
At no stage did anyone say I had sepsis!
Yesterday had appointment with a consultant regarding a procedure I had done and he said you had a severe kidney infection and mentioned sepsis!!
He was surprised I didn't know that like why wouldn't I of been told that? He muttered something about infections turning to sepsis can't quite remember what he said though!
Anyone else had this happen?

I think people just like to know the truth.

My daughter wasn't told her premature baby had sepsis. She wasn't told the baby had aspirated. She wasn't told the baby had a collapsed lung. She wasn't told the true extent of the difficulty in rerouting the blocked stomach via 'a tangle' of major blood vessels.

My daughter had to have 20 wks worth of counselling after reading the discharge letter as it came as such a shock that she collapsed on the NICU ward.

Why wouldn't they just tell the truth?

You won't get a discharge summary from a&e, because you haven't been admitted to the hospital, so therefore cannot be discharged.
If you were then admitted to a ward or medical assessment unit, you should get a discharge summary when you are discharged smile

You absolutely are discharged from A&E, it's just a discharge from an emergency department attendance, rather than a discharge from an inpatient admission - clinicians should be recording on their IT system a discharge outcome, a discharge destination, and if applicable basic info of any follow up you'll be having.

You also can very much receive a discharge letter. One of the other pieces of info which must be recorded electronically as part of rhe Emergency care data set is whether or not the patient was given a copy of the discharge letter. Ideally the patient should have a copy. Of course, whether patients actually get given one is a whole other issue. In some (perhaps many) Trusts the clinician won't have finished typing up all the info about your attendance by the time you leave, so won't be able to print you a copy. In that case only your GP will get a copy.

@CovoidOfAllHumanity

Well sepsis isn't an ICD 10 diagnosis. It just means an infection has spread to your bloodstream. It's a marker of severity but not a separate diagnosis. You would be treated for the underlying infection ie chest infection, urine infection or the microorganism if one can be cultured. There would not necessarily be any difference in treatment vs what you were already receiving for the kidney infection.

Why does everyone feel is it so important to be told about sepsis?
This is quite a recent development that people have even heard of it since public awareness campaigns. The campaigns were so people would spot the symptoms and get antibiotics in time but having had sepsis once doesn't necessarily have any long term implications that you specifically need to know about.
You already know you had a very bad kidney infection as you were in hospital with it. That's all sepsis means really. You had a very bad infection and you knew that. What would it add to your understanding or future care if the word sepsis was used?

This, absolutely.

"Well sepsis isn't an ICD 10 diagnosis.
It just means an infection has spread to your bloodstream.
It's a marker of severity but not a separate diagnosis. You would be treated for the underlying infection ie chest infection, urine infection or the microorganism if one can be cultured.
There would not necessarily be any difference in treatment vs what you were already receiving for the kidney infection.

Why does everyone feel is it so important to be told about sepsis?
This is quite a recent development that people have even heard of it since public awareness campaigns. The campaigns were so people would spot the symptoms and get antibiotics in time but having had sepsis once doesn't necessarily have any long term implications that you specifically need to know about.
You already know you had a very bad kidney infection as you were in hospital with it. That's all sepsis means really. You had a very bad infection and you knew that. What would it add to your understanding or future care if the word sepsis was used?"

Because they don't know this. OP, did you know that sepsis isn't a separate illness on its own until now?

There’s no conspiracy of silence within hospitals, I mean it’s not part of the nurse and Drs training the importance of how to keep information secret from patients.

And IME patients are given information but are poorly, sleep deprived, frightened on strong medications and don’t always retain all of that information.

But then we don’t always go into every detail of possibilities, catastrophic end situations, frightening words or phrases when people are responding well to treatments and are recovering well.
Sepsis up until recently was described as infection or severe infection to patients and relatives, the phrases as understanding increases, changes.

I think it’s a non issue to be honest, how would them saying sepsis instead of infection to you change a single thing?
You were treated, you recovered yet they didn’t say one particular word to you, so what? I don’t get what your complaint is?

Sepsis, as pps have alluded to, is just the medical word for infection. It can be localised (confined to a particular area or organ) or generalised/systemic (where the infection spreads into the bloodstream).

The most severe end of the spectrum is septic shock, where the body’s attempts to fight the infection cause damage to various organ systems. This will require ventilation and life support in ICU.

Sepsis is not a separate disease. You were told you had a bad kidney infection, therefore you were told you had sepsis.

@SecretRedhead

I don't think I've ever been given a discharge summary, ever. very strange hospital you've been attending, you're supposed to get a discharge summary every time you're seen.

OP it sounds like he was saying the kidney infection could have turned to sepsis. Were you taken to ITU? Did you need a ventilator? Did you have ongoing symptoms after?

You don't necessarily need this I had sepsis twice and just given IV antibiotics and fluids on a general ward

I don’t think I’ve ever told anyone they have sepsis or septic shock. I explain the infection, the likely source, the impact on any other organs, what the inflammatory markers are doing, what support is needed whilst we wait for the antibiotics to work.

I’m in ICU so most people with sepsis don’t need me, they are treated on the ward, get better and go home.

What would you have done if told that specific word? What difference in treatment would you have requested?

OP what you actually had was pyelonephritis as that is the technical term for a kidney infection but you aren't complaining that that word wasn't used.

A Dr would see not using the word sepsis in the same way. We'd say 'you had a bad kidney infection' because that is explaining it in layman's language.

'You lost a lot of blood' rather than 'you had a haemorrhage'

Drs and nurses aren't lying or conspiring to keep things quiet they just might not use a specific technical word if they thought it would not aid understanding.

I once had a patient's family very upset because the discharge summary said he had 'chronic kidney disease' which they thought meant 'very bad kidney disease' whereas in fact it means 'long term' and his was very mild.

@RichardMarxisinnocent

*You won't get a discharge summary from a&e, because you haven't been admitted to the hospital, so therefore cannot be discharged. If you were then admitted to a ward or medical assessment unit, you should get a discharge summary when you are discharged smile*

You absolutely are discharged from A&E, it's just a discharge from an emergency department attendance, rather than a discharge from an inpatient admission - clinicians should be recording on their IT system a discharge outcome, a discharge destination, and if applicable basic info of any follow up you'll be having.

You also can very much receive a discharge letter. One of the other pieces of info which must be recorded electronically as part of rhe Emergency care data set is whether or not the patient was given a copy of the discharge letter. Ideally the patient should have a copy. Of course, whether patients actually get given one is a whole other issue. In some (perhaps many) Trusts the clinician won't have finished typing up all the info about your attendance by the time you leave, so won't be able to print you a copy. In that case only your GP will get a copy.

I stand corrected

"TheScurrilousFunge most women haemorrhage when giving birth - it just means you bled! If it was a minor bleed that didn't need any further treatment then why would they specifically mention it? Obviously they have recorded it on your notes, which you have read.
I had a PPH, needing emergency surgery and 7 units of blood and platelets plus a week in ICU. I don’t actually recall anyone telling me I was haemorrhaging - it was obvious!"

@Soontobe60 It was 1000ml. My husband said that the room smelled like a butcher's and that my blood was all over the floor, just steadily trickling out of me. That is a PPH, not just bleeding that considered par for the course with childbirth, and I think it was pretty crap that no-one saw fit to mention it to me as a cause for my feeling so dizzy and lightheaded every time I got up. I had no idea what was happening as I wasn't in a position to see either the wreck of my foof or the floor.

So, yeah, it could've been worse, but it wasn't nothing and I think I should've been told that it happened at the time.

I'm sorry you had a much worse haemorrhage than I did - I hope any other births you had were easier.