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?

Everything should be documented in your notes.

Things get lost though so it's impossible to know if anything was documented.

Everything? Right ok thanks. This was a pretty huge thing because it was at a time when my husband and children weren’t allowed into hospital to see me for 2 weeks whereas some random woman from a charity trust could.

And she was grumpy and said the thing about me dying if I didn’t take their dodgy trial drugs! Completely unprofessional and I felt quite pressured with her there talking to me about trials without a medical person.

So @Livedandlearned - you definitely think that should have been in my notes?

A non clinician , possibly not. Why are you querying it?

The other thing is, I can’t get it out of my head. It’s really been worrying me for the past 3 years. I think I might contact PALS and ask to talk it over with them. I’ll go through my notes again too in case it’s there and I’ve missed it, although that’s doubtful as I’ve read them twice.

Are these paper or digital notes?

did you take the trial?

If you had the option to join a clinical trial then it should have been documented.

It won't necessarily be in your discharge notes though - you would need to do a request to see your full notes.

Never worked in a hospital.

It seems likely that notes should state who, in a professional capacity employed by the hospital, provided you with care and what they did.

If she was an external guest, not performing work for the hospital, any visit to you should have been with your consent. But conversation wouldn’t be part of clinical notes.

it seems unlikely that a hospital would record potentially unprofessional comments like the ones you report! For example, I was once told off in a maternity clinic by a midwife for crossing my legs and she said, verbatim, ‘you could get a blood clot and die’! Outrageous.

If she wasn't clinical or NHS she may not have had access to your notes. However id have expected the nurses to mention the visit in their notes. If this was during covid times i barely had time to write any notes…

@LIZS I’m questioning it because I feel it wasn’t done correctly and at a time when I was very poorly, I feel she spoke to me in a threatening way in order for me to take one of the trial drugs….one of which is quite controversial (luckily I knew that at the time). She had the paperwork there with her, all ready for me to sign!

They’re my full paper notes.

I said no to both trial drugs. I don’t remember what the other was called because it was a name I hadn’t heard of and she didn’t explain it.

What capacity was she working there or visiting in?

it sounds like you didn’t consent to be in the trial, but don’t think the way the ‘recruitment’ for the trial was managed was adequate as regards your consent to a visit (if this was from an organisation outside the hospital) or discussion about it?

How did she know that you were even suitable for a clinical trial, random clinical trial staff don't usually just approach patients with paperwork, what was the trial and drug.

I have my full hospital notes for the full 2 weeks I was there.
There was even a piece of drug info missing - ironically about a drug I knew they had given me and when I asked her, the nurse simply said it was an antiviral….which I later found out wasn’t an antiviral but a monoclonal antibody drug. They had not included it in my notes and so I told them I wanted it adding because it had medical implications if I had a reaction to it.

They added it.

I wouldn’t have expected her to have my clinical notes as she wasn’t a hospital clinical employee. However, I would have expected the ward staff to have added her visit to my notes. I noticed in my notes that my consultant had added that they were getting ready to give me one of the trial drugs (thank god they didn’t)!

Were they covid vaccinations

Exactly.
Let’s just say she works for a Trust. I would have expected ward staff to have asked me if she could come and talk to me or it nobody said a word about it either before or after.

On looking online, I can see zero mention of the Trust on the hospital trusts website. It’s all very weird. It’s also weird that a charitable trust was coaxing people onto trials yet without any mention of it in my notes.

No they weren’t Covid vaccinations.

I have no idea what one of the trial drugs was but the other one was Remdesevir. It was that which the consultant had written on my notes as them preparing to give me. Obviously there was nothing following on from that in the notes because I didn’t consent.

Yeah you are right they should have. You would have had to agree to the trial drug, the fact the consultant had planned to means nothing without your consent. Our consultants plan things all the time that patients refuse. If they'd done without your consent thats another story..

Thanks. I just feel very funny about it all. I was having regular obs done and the nurse that came in after her visit never said a word about it.

Weirdly, I didn’t mention it for the rest of my time there but once she had gone, I didn’t feel i needed to. On getting home though, I was like ‘hang on a minute, why wasn’t I asked if I wanted to speak to her, why was she allowed into my high dependency room alone to coerce me into trials and why, was she allowed to tell me I could die without having one of them?! I felt very uncomfortable about it.

They DID give me the monoclonal antibody IV without my consent…..even saying it was ‘just an antiviral infusion’ which it wasn’t. However, im not so bothered about that as I only had one bag and I haven’t started squeaking like a mouse yet!

Ask for your digital notes.

how do you know they werent a doctor on the team?