Meds left off my GP discharge summary by hospital.

[Verbena17]

Hi
I recently spent a couple of weeks in hospital and noticed once I got home, that two specific drugs were left off my notes (one was a common antibiotic I’ve had before so I’m cool with that).
The GP confirmed they have the same copy as I have (discharge letter) and the letter doesn’t mention the two drugs...one being a trial drug never been used before for the illness I had and for which I wasn’t asked or told. When I asked what the medication they were giving was, at the time, the nurse simply said ‘it’s an anti-viral’. For the rest of my stay, I didn’t think to enquire. I just wanted to get better and leave.

Since being home and calling the hospital to ask the name of the drug, I’ve discovered it’s only been given Emergency Use Authorisation Only for the illness they gave me it for.

I’ve found that I could get side effects from it for months after (they never told me that), including liver disease! and their official website (people who make it) say it can lead to certain cancers. Also, it uses quite a controversial genetic modification.

Had I been unconscious, obviously I wouldn’t have been able to give consent or even worry about it however, I was fully conscious the entire stay and they explained other meds they gave me.

Surely I should have been asked for my consent to be given an active trial medication and had the side effects/contraindications explained to me etc. Plus, if i hadn’t asked, how was I supposed to report any adverse reactions once I got home.

The staff during my stay were all really lovely but I have this feeling of slight misconduct, by not having the meds included in my notes.
Should I call PALS?

2 years ago yes. Now, no. You could basically be describing the covvie jabs and no one’s ever going to admit that coercing everyone into getting one was a mistake. It would set a legal precedent that could end up being very dangerous to the Gov.

@SweetBabyCheeses99

2 years ago yes. Now, no. You could basically be describing the covvie jabs and no one’s ever going to admit that coercing everyone into getting one was a mistake. It would set a legal precedent that could end up being very dangerous to the Gov.

What?!

OP, yes you call PALS. ASAP.

What was the medication, and how long ago was this?

I wouldn't bother trying to get the discharge summary updated.

I would place a subject access request for a full copy of your hospital notes so you can review them and seek further medical advice with the correct information to hand if necessary.

(My DS broke his arm in the summer, had emergency surgery to fit plates to both bones and suffered a serious allergic reaction to his meds in theatre. None of this was on his (mostly blank) discharge summary. It was a completely useless document.)

How to make a Subject Access Request:

https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/publication-scheme/how-to-make-a-subject-access-request

Discharge summaries are generally left to the most junior member of the medical team, who may or may not be aware of all of the details of the admission, and may or may not have actually been involved in the patient’s care. Any omissions in the summary are more likely to be down to that to any deliberate attempt to cover up things that happened. However obviously if you don’t feel you were informed properly about the medication you were given it’s totally appropriate to raise that.

Not the same thing, but my son has things left off his medical discharge report ALL the time.
Basically, he has several diagnoses and we frequently get discharge reports where some are omitted or incorrect. I just make my own records and update the next doctor we see.
I'd suspect it's an oversight rather than anything more sinister.

Thank you for the replies.
sweetbaby defo not the jabs I was writing about.
I’ll speak to PALS next week then.
And thanks Chequerboard I’ll defo do that - to get my full notes. Then i can make a copy for GP so they can update my medical notes.

I can’t believe this happens so often! Very shoddy lack of medical protocol no it’s obviously something that hasn’t been looked into enough and policy changed. I also felt it was wrong to have my notes outside the room and not on end of my bed....although I was in HDU with no visitors I guess, so didn’t matter quite as much.

The drug was Tocilizumab- a (trial) humanised mouse monoclonal antibody, which is usually used for treating cancer instead of chemo.

It’s an immunosuppressive med used in arthritis. Now used in Covid pneumonia. It has a full licence for arthritis. It’s not used in cancer I don’t think.

I presume you were in hospital with covid. I was hospitalised in August (double vaxxed but immunosuppressed) and they gave me Tociluzumab for which I was very grateful. Its not an active trial as you say butan established treatment.
It's normally used to treat auto immune diseases such as RA but has been found to be very effective in treating covid if given soon enough. It might make the difference between being ventilated or not.

Did you also get dexamethasone and do you object to that as well because that's a drug often given to cancer patients, I know this because I had breast cancer two years ago and dexa was part of my treatment.

allthelols yes, sorry, I meant treatment for cancer drug reactions.
Glinsk Yes it has a full licence for arthritis but doesn’t for Covid pneumonia - for that it’s still being trialled.

My main concern is that it wasn’t on my notes.

It is now standard care following the recovery trial. If you were in HDU with covid you were sick. Clearly it’s done its job if you got home. It’s not a trial drug any more.

@SweetBabyCheeses99

2 years ago yes. Now, no. You could basically be describing the covvie jabs and no one’s ever going to admit that coercing everyone into getting one was a mistake. It would set a legal precedent that could end up being very dangerous to the Gov.

🙄

Your hospital discharge will detail the meds you are taking on discharge and need to continue - not the meds you were given as an inpatient.

rocka that doesn’t seem the case here - it mention dexamethasone and yet I stopped taking that the day before I left p, as well as the NG feeds I was given but stopped days before I left.

Discharge summaries are usually written by a very junior doctor, and they wouldn't necessarily know all the details of your admission. They may not mention everything that happens during your admission, and may not mention all the medications you had. They would need to list all the medications you were to carry on taking after leaving hospital as your GP needs to continue prescribing them, but your GP doesn't need to know about all the medications you had in hospital.

Were you in with covid infection? Tocilizumab has an emergency use authorisation for covid. The authorisation is to enable the treatment to be given without the usual longer slower process of approving medication for specific causes. This will be common in treating covid where new treatments will be used.

You should have been consented if you were being enrolled in a trial, but from what you said you weren't enrolled in a clinical trial? This isn't a "trial drug", it is a new indication for this drug, in the way that many drugs have recently started being used for covid as evidence emerges.

Probably the nurse didn't know much about the medication other than it is used to treat covid virus, so she called it an antiviral.

Completely normal to keep notes outside the room - staff can access them without having to come into your room (particularly relevant if you were infectious), they don't get lost.

If you were in HDU you would have been pretty unwell. Yes your medication should be discussed with you. in practice this wouldn't involve going through every side effect as most drugs have very long lists of side effects, liver damage listed for many many drugs for example. It may be that you were told about the treatment but it didn't register with everything going on, or that it wasn't discussed, which would be poor practice - but realistically I think things are pretty hectic in hospitals currently and sometimes the communication can suffer.

The risks you mention may be more likely with the previous uses of the drug for rheumatological disease (where patients took it long term) whereas you presumably only had it for a short amount of time (I don't know, just thinking logically).

I really, really doubt there has been any kind of conspiracy here.

Obviously you can write to PALS if you want to seek more information.

You should be grateful you were given a lifesaving drug instead of planning to complain.
Discharge summaries usually list the drugs you take home.
I took dexamethasone home and it was on my discharge letter but the Tazocin and Tociluzumab I was given intravenously weren't listed.

My main concern is that it wasn’t on my notes

It would be in your medical notes. But it doesn't need to be in your discharge summary. Your discharge summary needs to state why you were in hospital, what medication you went home on, and any recommended actions for your GP. It doesn't need to say what was done in the hospital. If the junior doctor mentioned some things but not others, probably they flicked through your notes and added a few details. They could have easily mentioned the tocilizumab but not the dexamethasone, or not mentioned either.

Thanks hopelessly. I wasn’t suggesting there was conspiracy - just poor practice by not asking me to consent or even discuss it. It wasn’t manic....it was all very calm and I chatted to HCA’s, nurses, doctors, catering staff etc all the way through my 2 week stay.

It is still an emergency use authorisation only medication for its use 8 COVID patients so yes, when i said trial drug, i probs should have said that.

Everything definitely did register with me....I was never unconscious or even poorly - just had to have CPap and monitoring. Yes i was very poorly but I didn’t feel it. I was completely fine to understand everything. They explained the side effects of the dexa but not the Tocilizumab so it’s not as if it was constantly being uninformed.

Anyway - the main thing is that i will ask for my hospital notes just as an extra for future ref and I will ask GP to note down that I was given Tocilizumab in case of issues months down the line.....as it states there can be.

Thanks everyone.

Tocilizumab given for covid is one dose, intravenously.
Rheumatoid arthritis patients take it for years.
Staff have to be in full PPE on a covid ward and keeping notes outside minimises access and helps protect staff.
Dexamethasone is a drug which has been in use for years but given emergency authorisation to treat covid.

Instead of making a complaint how about sending in a gift and a letter thanking the staff for looking after you.

Usually your gp will get a discharge summary with meds to be continued then will get a further inpatient summary which may note your response to any treatment.

Also most notes are now electronic the only physical notes required on wards are for nursing staff to note observations on.

Mumsnet really needs an edit button

it’s only been given Emergency Use Authorisation Only for the illness they gave me it for.

So you needed it then?
Honestly I don't want to be in the nhs anymore, it's been shit and draining and people now just want to take legal action constantly. I've had enough.

Glinsk they mentioned dexamethasone I’d been given in hospital on the discharge summary but I wasn’t taking it home. I stopped it the day before I left.
I was grateful for the brilliant care I was given. And the whole point of my post was asking if I should complain/ask PALS etc....not saying I was definitely going to.

And if I did call PALs, it wouldn’t be for me to complain about me....it would be to prevent others from experiencing poor practice. As a former student midwife, I know how much trouble I’d be in if I went ahead and broke someone’s waters without getting their consent. I see no difference here when giving a patient an emergency use authorisation drug without consent.

Anyway - thanks for all the suggestions and advice. I will just get the GP to update my notes so they have it listed.