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?

Michelle, I don’t want to take legal action!
I said above how brilliant my care was.
I was just concerned that an emergency use authorisation drug was left off my discharge summary but now, I’m no longer concerned.

glinsk I DID send cards etc to the wards. Why assume I didn’t!!
I didn’t realise nobody was allowed to be negative about poor practice any more! If I had known all the answers, I wouldn’t have posted to ask!

kevinthesnipe thanks - very helpful.

@Verbena17 why is the thread in 'Legal Matters' then?

Because I believed it was about medical poor practice.
At the time of posting, I didn’t know if the drug had been left off on purpose or not. Hence I chose to post in legal matters.
Perhaps I should have posted it in health.

Surely I should have been asked for my consent to be given an active trial medication
This is the precise phrase used by anti vaxxers who refuse a covid vaccine resulting in our hospitals are bursting with unvaccinated patients with covid, so you might forgive my feeling that you were looking for conspiracy rather than simple error.

Are you for real OP?
My husband spent 4 and half months vented in ITU as a result of critical COVID and this is what you focus on?
I find your post utterly offensive.

glinsk I didn’t mention conspiracy or vaccines. Indeed, out of 5 of us on the Covid ward, only 1 was unvaccinated and the other 4 were either double or triple vaccinated and had the EXACT same symptoms.
I think if you look at the stats, the hospitals are bursting with fully vaccinated patients

Poor practice my arse, you should be grateful to be alive if you were in a High dependency unit with COVID.

GP2020 I was simply asking about informed consent of an EUA drug and about what I believe is important info being left off my discharge notes.

Im sure if my post was about any other illness other than COVID, you wouldn’t have posted.

I’m sorry to hear your husband has been so poorly.

@Verbena17

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.

Maybe the d/c letter was written a day or two in advance and when the looked at your Kardex the Dex was there so was written in your d/c letter.

I think that significant events are the main things written on d/c letter. For example they might not say you were dehydrated and given X number bags of fluids. But they would write that you had a fall and a CT scan which was clear IYSWIM.

It’s nice that the team made time for you and didn’t make you aware of how busy they actually probably were.

Hope you are doing okay now - sounds like you had a pretty difficult time!

Thanks suffolkpunch.
Yes I see what you’re saying.
Thanks- I’m on the mend. Think a couple of weeks of (mostly) lying in bed made my muscles weak but other than that, I’m doing ok.

OP I understand your concerns and also can grasp the nuance that you can be both grateful for the care that ensured your survival AND also be concerned that you weren’t asked to consent to be given a medication that was currently on trial for that application.

Medical autonomy is of the utmost importance and I agree you should have been told I of its status, if you were in a fit state to consent at the time.

To give you a comparison, I have been prescribed medication ‘off-label’ by a consultant several times and he has always been careful to explain it would be off-label prescribing and has made sure I’m happy before writing the script. I’m surprised you weren’t told about this, though suspect it was probably due to error/miscommunication on the ward as to who would be informing you of this, rather than anything sinister.

Thanks totallydefeated - you have explained perfectly the way I feel . I agree - I’m sure it’s error not purposeful malpractice.

I don't think it was an off label use though - the emergency use authorisation I think is the mechanism by which the drug has been given an urgent licence for covid. So there isn't a requirement to inform you it's off licence or a 'trial drug', because it isn't.

OP seeing a post above that the medication is only given as a single dose for covid infection, I can see why the side effects and risks weren't discussed as they were for dexamethasone. The listed risks and side effects have been from patients taking the drug long term (regular use for years) for rheumatological disease. Giving one single dose is very different to using a drug regularly for years in terms of the side effects/ risks. Using this drug regularly for years is associated with a higher risk of some cancers, you had a single dose.

I agree patients should be informed about what medications they are prescribed, I would say some things aren't happening perfectly currently with the current very severe strain on the health service. Whilst you can write to PALS, personally I would not as it will be pretty demoralising for the staff having to answer a complaint about this.

In honesty although you are certain it wasn't mentioned, it may have been. you were very unwell if you were in HDU, and this probably would have been just mentioned in passing on a ward round or by the nurse administering the drug that you are being prescribed a single dose of a drug - there wouldn't have been a big discussion about it because there wasn't much to discuss. Given its a single dose it wouldn't have been relevant to say "if you took this drug long term there are these risks" because you were only having one dose. There would have been more discussion around dexamethasone because you were taking it long enough to get side effects and they wanted you to say if you were getting these side effects.

It wouldn't have been listed on your discharge letter because your GP doesn't need to know all the medications you had in hospital. Quite possibly there were others given too which weren't listed.

Being ill sucks OP but you should focus your unhappiness on something else. It sounds like they saved your life. You say you weren't that ill so why were you in hospital? Have you heard of happy hypoxia?

hopelesslydevoted in all honesty, it wasn’t mentioned, other than administering nurse saying it was an antiviral. I asked what antiviral and she said PHE have said every patient with symptoms like me could have it as part of the covid protocol. I said ‘oh ok’. So no, it wasn’t discussed with me. I said ‘oh ok’ not knowing the drug name or anything about it.

Whilst it was only one dose, I think it’s pretty important to get consent when you’re giving someone monoclonal antibodies under EUA. Being under EUA is not the same as being fully licensed for the illness it’s usually given. As I mentioned before, I’m not saying if they had fully informed me I would have said no....I’m saying I should have been told.

Flashbac I know what you’re saying but I now just want to get my GP notes changed to show I had the Tocilizumab. And yes, I suppose it was happy hypoxia. I was ill in bed the week before with a really bad cough which ended up with my O2 being lower and couldn’t resaturate. Once in hospital, on constant O2 and then a week of CPap, I felt physically fine....although I wasn’t clinically fine. I was chatting about the meals, chatting to the cleaning lady, I was watching tv and can list and describe every programme in detail - so no, I out of it at any point. Apart from a couple of very elderly poorly men, the other people who were in HDU with me, were all like me - able to chat normally and call people and watch tv and eat normally etc.

So anyway - it’s all sorted now and I will just get my GP notes changed with Tocilizumab added on, just so they know.

The discharge summary would usually report the medication at discharge ie what the Gp is expected to continue prescribing

It is not supposed to document every dose of every drug that you were ever given during a stay. That is not the function of the discharge summary. The function is a brief communication to the GP of what they need to do/ prescribe/ be aware of now not blow by blow of what happened on the past. No GP would actually read that for all their patients for one thing. The place for the detail is in the hospital notes.

If, for your own reasons, you do want a blow by blow of everything you were given at any point then it will all be in your detailed hospital notes which you can request a copy of via making a subject access request (SAR). PALs can assist you to do that

I rang the discharging consultant’s secretary yesterday, who was lovely and agreed it should have been on the discharge summary and is going to be amending the summary and sending to me and the GP.
She agreed because it’s a drug that is EUA and one which can have side effects after only one dose (including heart complications), it should have been put on the notes.
I’ll be making an SAR for my notes at a later date.

Thanks for posting everyone.

With the greatest respect she is the secretary. As a non clinician what she thinks is really not the determining factor of what should or should not be in a discharge summary or why. She cannot in fact amend it on her own authority and will have to ask her boss or the person who wrote it.
However she is clearly a decent old school secretary who will protect their consultant from having to deal with such matters and has succeeded in getting you off the phone politely which is a decent result all round.

@CovoidOfAllHumanity

With the greatest respect she is the secretary. As a non clinician what she thinks is really not the determining factor of what should or should not be in a discharge summary or why. She cannot in fact amend it on her own authority and will have to ask her boss or the person who wrote it. However she is clearly a decent old school secretary who will protect their consultant from having to deal with such matters and has succeeded in getting you off the phone politely which is a decent result all round.

There is really no need for this rather nasty condescending attitude towards a concerned patient.

She isn't complaining or being difficult. Just seeking information to help get manage her own health issues. Most people would think that's a good thing - patient activation is a goal for many healthcare professionals.

A completely theoretical health issue that has not arisen. I would have more sympathy if this was any kind of reasonable concern but for me this smacks of anti vax Covid denial stuff which I am sick to the back teeth of as are most frontline clinicians and that is why my attitude to it is poor.

@CovoidOfAllHumanity

A completely theoretical health issue that has not arisen. I would have more sympathy if this was any kind of reasonable concern but for me this smacks of anti vax Covid denial stuff which I am sick to the back teeth of as are most frontline clinicians and that is why my attitude to it is poor.

So you’re exercised about ‘anti vax Covid denial stuff’ and as a result have developed a belief that that means nobody should ever have the temerity to want to have accurate records of their medical treatment. You have then projected that on to the Op and feel that justifies you taking a superior and belligerent attitude to her.

Right.

Well I guess we all have different standards when it comes to our personal conduct.

Tociluzimab should definitely be mentioned in your discharge summary- PPs are right that not every little detail is needed but your GP should know that one. The NHS guidelines clearly state that any transfer of care eg from hospital to GP, or between hospitals should mention that it’s been given. It’s far more likely to be an oversight by a junior rather than any kind of deliberate omission though.
Well done for noticing and sorting it out, and glad to hear you’re making a good recovery.

covidofallhumanity - of course the secretary wasn’t giving me health advice or amending it herself! Of course she was going to explain my call to the consultant! Perhaps I worded my previous post badly but your harsh assuming of my intentions regarding covid was a bit uncalled for.

I explained why I would like the notes amended and she agreed it was understandable that I would want that. It was me who said the reasons why it needed amending and she wasn’t rushing me off the phone at all!
It’s a shame you don’t understand the very clear and obvious importance of bodily autonomy and a patient’s right to have accurate hospital notes about important medication that could have serious side effects/contraindications with other medications. (if I went to see my GP and they were to prescribe me meds, how exactly do you propose they would have known any contraindications to the monoclonal antibody drug without it being written on the discharge summary?

totallydefeated and faintlymacabre thanks for your well explained comments. .

@CovoidOfAllHumanity

A completely theoretical health issue that has not arisen. I would have more sympathy if this was any kind of reasonable concern but for me this smacks of anti vax Covid denial stuff which I am sick to the back teeth of as are most frontline clinicians and that is why my attitude to it is poor.

That’s quite funny - the covid denial part..... I was literally in the respiratory ward and HDU for two weeks with covid pneumonia.

I’m sorry you’re worn out with it all and I imagine if you’re a clinician you get all sorts of crap thrown at you everyday but my stay in those wards was amazing, care-wise. They couldn’t have looked after me any better. So apart from the Tocilizumab being missed off the notes and not being told what I was given, I couldn’t and wouldn’t want to criticise the care at all.

However, I had absolutely no idea as to whether having meds missed off notes was a common thing or not and also not being given an informed choice over the EUA drug, which is why I posted. I was asking for genuine thoughts, not moaning!