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?

Your GP definitely needs to be informed as they need to be aware you can't have any live vaccines for 3 months. Transitions of care are such a high risk area, often due to miscommunications and misunderstandings.

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

I think @CovoidOfAllHumanity is referring to your phrasing in the initial post, just as I did in my earlier post.
Are you vaccinated OP? Of course you don't say. Did you ever refer to the vaccine as "experimental trial drug"?
These are the phrases that are trotted out by anti vaxxers day after day. They won't take a vaccine that costs £7 but end up in hospital being given life saving drugs and costing the NHS £thousands, taking up beds urgently needed by others.

I was double vaxxed when I was hospitalised with covid. I have auto immune disease so the vaccine was less effective. The doctors say it still saved my life. My fellow patients were all unvaccinated and the staff treated them all with equal compassion and care. That doesn't mean frontline clinicians like the poster above don't privately feel huge frustration and resentment towards anti vax stuff.

confusedlots I’m really surprised and would have thought transitions would be pretty much watertight.....that’s the main thing I was querying. I didn’t realise important things like that were commonly missed off notes.
Yes, I knew about the monoclonal antibodies and 3 month wait....thankfully!

It was on your notes - your discharge letter is a summary that is all. Your full notes will be in your file on your hospital notes

And it's completely normal not to have bedside notes these days - in fact it's very old fashioned to have your notes at the bedside - on risk assessments etc will be bedside. Your medical notes are hugely confidential and so are kept in the notes trolley where they are safer and random people won't be able to pick them up and read it

I'm not 109% sure I can't actually see what your issue is

However, I had absolutely no idea as to whether having meds missed off notes was a common thing or not

In my extensive experience, yes. They are generally written by overworked Juniors and in some cases I even wonder if they got the right patient. But sure, ring around and complain, you won’t change the world though.

I’m really surprised and would have thought transitions would be pretty much watertight

No, transitions are a real problem point and fraught with error. Watertight ba ha ha, that’s so idealistic. It’s a real problem but with the system and resources as it is, well it is what it is.

@Verbena17

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

That's not controversial. It's inaccurate, though.

Hamster drugs here. They fucking awesome. As presumably your mouse ones were as you left HDU alive?

It's not been missed off your notes. Posters have repeatedly told you this. It's clearly on our notes as the hospital were able to tell you you'd been on it.

I find it a little bizarre you rang up the hospital to find the name of the drug you were on, you must have had some suspision it wasn't a common antiviral?

A discharge summary is just a summary of your care to be passed onto the Gp, it's not in anyway shape or form your notes. You could argue that yes this drug probably should have been included, but normally a discharge summary wouldn't include the drugs you had been given while you were an Inpatient, and that information is still available in your hospital notes.

I think this pretence that you don't want to criticise the care should be stopped, you are criticising the care. You've rung the hospital asking what drugs you were on, your asking for your notes for future reference. You've posted in legal and are repeatedly insisting something has been left out of your notes when it hasn't. That's not the actions of someone who is happy and grateful with the care they've received.

Honestly I think this is one of those things that was probably an oversight from a very junior doctor, as Inpatient meds would not normally be put on the discharge summary. You've raise the issue now with the secretaries, there's no need to take it any further. Your GP knows you've had it.

carrotsticks19
I had stopped posting days again as this was resolved but having read your post, much of which is incorrect, I felt I should reply.

My GP does not officially know I’ve had it. The hospital confirmed that no hospital notes are sent to the GP (obviously, as they’re so copious) and the GP confirmed with me that whilst I’ve told them I had it, it needs to be confirmed in writing from the hospital.....which I posted above that the secretary was getting the discharge summary amended.
I haven’t said I’m taking anything further, now that I’ve sorted it.

You say drugs aren’t usually included on discharge summaries but that’s incorrect.
My discharge summary contains multiple meds I was given.
How exactly do you suppose my GP would be able to safely prescribe me (possible contraindicated) medication over the next few weeks without knowing I had been given Tocilizumab?

Saying I’m criticising my care is plain wrong. The care I was given was the best care I could have imagined.
I blatantly expressed in posts above I wasn’t being critical.
If people had read my last posts correctly, they would have realised this is all sorted now and I’m simply just waiting for my discharge summary amendment to come through.

By the way - asking for a persons own hospital notes isn’t being critical of care. It can be a really way to help a patient come to terms with a traumatic incident or might be simply because they want them. It’s a service every hospital provides. They’re your notes - describing your detailed care and you are entitled to have them.

neverdropyourmooncup not sure read all of my posts - I realised the drug wasn’t for treating cancer but for treating the effects of some cancer drugs....which I corrected shortly after my post.

The results of the trial did not show significantly lowered death when using that drug in comparison with not ....but was (I believe) significant for length of stay in hospital.

Blushingm. My issue was that by not stating it in my discharge summary, my GP would not have that information. There are significant adverse reactions in some patients within a month of taking one dose. There are also drug contraindications when mixed with other meds.

Therefore, let’s say I went to the GP for something unrelated the week after I came out of hospital - I didn’t know I had been given Tocilizumab and the GP’s don’t know I was given Tocilizumab. How then, would they know if was having adverse reactions or if they could give me something to take which might potentially react with the Tocilizumab.

It’s not complicated to understand why I was trying to find out the drug name or why I wanted my summary amended.

Your gp wouldn't need it. Same as they wouldn't need to know all you BP recordings or temperature readings or anything. The hospital don't have your entire GP record and vice versa. There's no need

If you have an op your GP isn't informed of exactly what anaesthetic was used, what pain relief you had. If you say had pins and plates your gp isn't given manufacture details etc

If you have a long term catheter your gp isn't told what size etc

Your gp isn't sent your X-rays

@Verbena17

Blushingm. My issue was that by not stating it in my discharge summary, my GP would not have that information. There are significant adverse reactions in some patients within a month of taking one dose. There are also drug contraindications when mixed with other meds.

Therefore, let’s say I went to the GP for something unrelated the week after I came out of hospital - I didn’t know I had been given Tocilizumab and the GP’s don’t know I was given Tocilizumab. How then, would they know if was having adverse reactions or if they could give me something to take which might potentially react with the Tocilizumab.

It’s not complicated to understand why I was trying to find out the drug name or why I wanted my summary amended.

Were you about to go onto Methotrexate? Have a smallpox vaccine? Go travelling in an area where yellow fever is endemic?

The nearest thing is a warning to be careful when having flu vaccines - but people have those whilst on such medications all the time (myself included).

What contraindications are you referring to precisely?

Your GP may not officially have it in writing but they aren't going to merrily give you the smallpox vaccine if you say you've had tocilizumab in the last 3 month. If you did get liver problems they aren't going to pretend they don't know you've had it. Especially when it's now used relatively commonly in covid patients, and youve rrcently had an admissionf for covid. No notes are sent to your GP bt they are still in your notes, at the hospital.

Just as when you are an Inpatient the hospital does not have access to your GP notes. They don't ignore a patient telling them they've a penicillin allergy until they've got it in official writing from the GP.

As I said Inpatient meds arent usually included, some maybe but most won't. It was probably an oversight as it is not usual practice to include Inpatient meds on the discharge summary. This is a fact. There a lots of details not included in the discharge summary that the GP could access if they needed to because they are in your hospital notes. For example operation notes will not be available to the GP unless they request them. Your hospital notes are just as valid notes as your GPs