Query about Hospital Notes

[Verbena17]

Hi, so I’m just wondering about a detail which wasn’t added to my hospital notes a few years ago. I can’t get it out of my head and hoped someone here might know.

If a person connected to the hospital but without any clinical remit, walks into your single hospital room (with ward staff obviously knowing), talks to you and questions you about going onto one of two drug trials and then tells you ‘you might die if you don’t’ (sign up), should any of all of that be in my hospital notes? At least the part where the person went into my room/what time etc?

I was trying to work out how firstly, nothing about them coming in is in my notes and secondly, how nobody medical came in with them or mentioned it to me before or after they came in.

Should something about them have been on my notes?

I wouldn't expect a nurse to tell me it was off licence, I would expect a nurse to have labelled the bag with your details and drug details, signed the prescription chart and followed any monitoring protocols that were in place. Are there nursing notes combined with the medical notes you've seen. Documentation can be dire, it's not always malicious but its careless and communication can be dreadful.

It was 3 years ago OP and you clearly survived why are you so hung up on this. Even if you go to PALS none of the staff would remember now and probably not even the same staff work on the ward.

It is very unlikely that ward staff would know much about clinical trials tbf. They would be told if a patient was in a trial and given a simple instruction sheet, that is all. They wouldn't be involved until a patient was actually enrolled.

I understand that you may not have felt you were given respect, advice or that the Wellcome staff member was rude but that drug they gave you may of saved your life but it has obviously upset you. What outcome are you looking for.

Sorry if missed it- was it for covid?
We give MAB routinely now if it fits criteria widely use though agent changed a few times

She looked at my notes without my consent?

Why does anybody get their notes? Why don’t we all just not bother?
Its not a case of PALS or ward staff not remembering….if there was a Trials protocol in place (which there obviously was), whereby Wellcome were getting patients to take up trials, there will be records of that. I just want to find that out.
At some point in the late 90’s, mums to be were told there was a new policy whereby they could speak to a midwife following birth, to discuss things about their baby’s birth in order to reduce trauma/PND. There’s a reason why patients are able to access hospital /medical notes.

Sounds like it ought to have been documented somewhere.

My only experience re hospital notes is from when I gave birth. It was a very traumatic and chaotic evening in Delivery. I saw an in hospital birth councillor while I was still in hospital. She discovered pages of my notes were missing. This and other errors in patient care that evening led to an internal enquiry.

Exactly and this is what I want to find out.

Not about why I wasn’t told I was being given a monoclonal antibody but because I want to find out why that woman was allowed to come into my room unannounced and talk to me in a derogatory way, including telling me i would probably die if I didn’t have her trial meds.

Hospitals/trial assistants etc have training for a reason. She clearly needed more.
And yes, it’s 3 years ago and yes I survived but if it didn’t matter, hospitals wouldn’t have procedures to follow when something goes wrong.

IIRC you posting before. You were in hospital with covid and given a life saving drug called tociluzimab and were hell bent on complaining to the hospital.

It was one of those drugs that had been around for years for auto immune diseases and was repurposed with spectacular results for treating severe covid.

I remember because I had the same drugs and remain incredibly grateful for that and all the other drugs given to me.

I remember posting after being in hospital about Tocilizumab, yes.
And I wasn’t ‘hellbent’ on complaining and I didn’t complain to the hospital.

Whilst I have mentioned it, this post isn’t about that.
You’ll see it’s about another issue regarding the drug trial.

I am literally wanting to make sure my notes include everything they should do - that’s all.

Maybe there was a list of patients who the doctors thought might be suitable and she was given this. The staff wouldn't be monitoring who was going into rooms, she would have been given permission to be on a covid ward. Maybe you could ask the Wellcome team or infection control or whoever was co ordinating covid at the hospital. Who do you think is at fault here.

She asked you said no - In my experience it wouldnt be in your notes

Im in hospital alot, talk to people about different medical things , medical procedures etc and nothing is ever in my notes

I guess I see it as the same sort of thing as me as a voluntary breastfeeding peer supporter/doula, going onto the postnatal ward (as part of the BfN charity set up) and telling a mum who has just given birth, that her baby will die if she doesn’t breastfeed. Imagine if I had ever done that. It wouldn’t be at all surprising if the mum complained or tried to ask why I had done that. And it certainly wouldn’t have been acceptable for someone to have done that.

I don’t want to make more of it than it was (although at the time her behaviour/attitude was strange and in my opinion, unprofessional) however, i wonder if she was like that to other people. Therefore I believe it should be recorded in case others have also complained/mentioned it. Whilst it was 2 1/2 years ago, I still feel weird about it and can’t stop thinking about it.

I also assumed that every hospital would have a record of who was entering the rooms of patients at all times - imagine if someone came in and did something to harm the patient/remove a drip/assault them etc. There would surely be a record. Even for the cleaning team, there’s surely a record sheet of when they cleaned each room?

To my knowledge there is not a list of who enters rooms, except those involved in your care but they wouldn't write down every time they saw you, spoke to you or treated you, the housekeeping staff might just tick a box when they clean a room. Staff can't monitor every patient every minute of the day, keypads on doors would show who entered a room but they are not used in general hospitals. A nurse or doctor might record and time an intervention or conversation but not always. Hospital wards are not locked prison cells, people come and go continuously. What would you be complaining about, a Wellcome staff member who came into your room and was abrupt, 3 years ago, you don't have her name, no one is going to trawl through hundreds of patients notes from years ago to see if someone complained, if you still feel upset you could write to the hosputal CEO or Director of Criticsl Care to say you had this experience but I doubt it will be investigated now.

Perhaps the better approach would be to ask for a debrief of your treatment, with your notes and queries arising. However you may find there is more information held within your digital notes, including a record of who has accessed them or been shared with. Did you submit a dsar?

@TraitorsGate yes you make sense. You’re right I know but it just keeps niggling me.

@LIZS that’s exactly what I will do.
I’ll request my notes in digital format (yes, I did a SAR request for the paper ones) and have a good read of those.

Then, if I still feel I need some bits clarifying, I will try and arrange with the hospital a notes debrief.

Thanks to everyone who replied on this post. It’s been very insightful and helpful.
😊

All the best, it's horrible having worries like this especially when you've been so unwell, a debrief may be a good idea if the consultant still works there, even a chat with your gp may help you.

Doesn't sound great tbh but if you didn't sign up then it's unlikely to go into your notes. When we offer research studies to our anaesthetic pts it only goes in the notes typically if signed up. May have a sentence saying offered and declined but not necc

available, really? NHS: ''Who can have COVID-19 treatment: You're eligible for a COVID-19 treatment assessment, without being admitted to hospital, if ALL the following apply:

• you're at highest risk of getting seriously ill from COVID-19'' - being at high risk is not enough anymore for NHS- being at 'HIGHEST RISK'- what exactly does this mean, who decides and when someone is at 'HIGHEST RISK', the UK government? Whose job exactly is to decide who is at 'highest risk' and what do these empty words even mean? They mean if you are sick, this will never be enough in the UK to be ENTITTLED to antivirals, unless government approves! Unless they ticked the right boxes! Unless you have one of the very few conditions they recognize as dangerous!(plus the rest of the entitlement conditions For a virus that can cause a lot of harm indiscriminately and sometimes even asymptomatically. NHS who has NO COVID TESTS, has a way to decide who is at 'highest risk'? REally? In America antivirals are used to treat a sick patient, you don't go and check with government organizations, when someone is sick, to find out if they qualify for a treatment needed to be given at the beginning of the illness. When someone is sick, all NHS needs is to contact an obscure organization to find out if the red tape was fulfilled to treat the patient in their hands? And you find this normal?

There will be a research team based at the hospital you were admitted.

Suggest you contact them to enquire.

If you did not consent to take part in a trial there wont be anything in your nhs notes however i wonder if there may be research notes somewhere else.

They would normally give patients written information about trials . Did she give you a leaflet?

example here
https://www.royalsurrey.nhs.uk/rdi

I don't really see why it matters anymore if its in your notes, it was 3 yrs ago and you declined the trial. If she's not clinical she won't have had access to your hospital notes and there maybe a record of who declined the trial but it won't be in your medical notes

There's no record of who comes in and out of your room, no.

She gave me nothing in the way of leaflets, no.
She came in with some paperwork but I didn’t see what it was.
At the end before she left, she crossly ripped up the paperwork and put it in the room bin (guessing she wasn’t allowed to take it out of the room due to contamination) but she looked annoyed and told me I shouldn’t believe things I read on the internet!

We prescribe MABs all the time it is on a Trust protocol - we have to rv the case with pharmacist usually and there is a couple of pages to complete - we have to agree with the inclusion conditions and there need to be no exclusion conditions then it's ordered from
Pharmacy and given. I usually put the completed protocol in the notes but then I'm quite particular.

Would it be better for you to talk this over with someone, it was a long time ago, you survived a very serious illness which may of been helped with the iv drug. Its hard to let go but this could make you ill, going over and over it when there's nothing to be gained really. Focusing on one person who you thought was rude isn't helping, would it help you more to focus on your recovery.