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?

It's all extraordinarily strange, knowing how GPs have no access to viral tests, let alone viral treatments- antivirals. This is the mess NHS is in when it comes to antivirals: https://www.telegraph.co.uk/global-health/science-and-disease/at-least-550-million-of-covid-drugs-wasted-in-the-uk/ While all this is going on, a relative of mine, a child, sick with a 'strange virus' no one tested him for, received 3 course of antibiotics, despite the blood test showing no bacterial infection, despite the fact that antibiotics weren't working (of course a virus is treated with antivirals, not antibiotics). They refused to test him for viral infections. Even if they did, why would they do it when NHS has no antivirals? If you read the link, you can see patients are not entitled to antivirals when sick, but another institution 'assesses' the ENTITLEMENT to antivirals, instead of a standard medical treatment for patients sick because of viruses, as it happens in America. Here, another institution is in charge, instead of doctors, quite extraordinary how after 4 years of millions of covid tests, UK has nothing: no covid tests, no covid treatments, no covid monitoring, no covid data, no covid vaccines, no covid information. While your antiviral treatment was secret.

Ah yes you’re right - thanks. That makes sense.
She was definitely lacking in the training department though! 😩

I'm just wondering, in all the covid panic, that all symptomatic positive patients were put through as candidates to receive either or both of these new trials. I wonder if they were offered or given to everyone unless they opted out or the doctors felt it inappropriate for whatever reason. All patients would have been tested for covid. I wouldn't necessarily expect there to be a mention that a non ward member visiting you , they may of seen every conscious patient but there may be a record of the trial, how it was conducted, which wards, the uptake etc. The hospital may gave records of all the trials they took part in and someone working for Wellcome may well have been a clinical or scientist.

How do you mean @ForRoseExpert ?

Just to add about access to antivirals: UK invented a 'trial study' - Panoramic where somehow politicians had/have access. When The education secretary fell ill with covid, the health secretary reassured the public that he will be ok, because he was part of this 'antiviral trial' . What he didn't mention is how was he so sure that the education secretary wouldn't receive the placebo treatment? This 'antiviral trial' was apparently supplied by GPs: does anyone know any GP advertising this trial? I would love to know one patient invited by their GP to take part in an 'antiviral trial'. And while NHS dismantled everything to do with covid and long covid, this 'antiviral trial' seems to continue, despite the fact that NHS binned antivirals, has no viral tests and patients have no access to treatments.

I wonder if antivirals really exist in the uk. Did you ever hear anyone being treated with antivirals- the only treatment for viral infections? I heard about people being very sick after covid and the only thing I hear is antibiotics, not antivirals. I bought my own antivirals from America, knowing that here no one is entitled to them, even when sick. They cost a fortune and this is not how medicine should work: this is a normal treatment in any other civilized country for patients very sick with viral infections, Why is it all a secret here?

I worked as a research nurse on the Recovery trial. The hospital provided a daily list of patients we could approach. We would always ask ward staff first. We had to have consent from each patient to discuss the trial and make it entirely clear that they were under no obligation whatsoever to participate.

goodness knows where your 'research' has come from. Antivirals are definitely available and used in the UK where they are clinically indicated.

A lot of antivirals are monoclonal antibodies- that’s not a bad thing. It’s just a (very clever, effective) type of antiviral. They’re not injecting mouse cells into you, I promise!

I looked into this since 2021 to try to understand what they are up to: the more you look & read the more mysterious it becomes when it comes to covid: they manipulated/hid/lied about everything to do with it, with no remorse and with no limits. Now in 2024 no one knows anything, people can't even remember the main symptoms, how you test, what you do, what happens when things go wrong, what are the treatments, what is the prevention. No one knows anything. In order to know, you have to read a lot of research, mainly from other countries. And now you are the only person I ever heard to receive antivirals. But in this way? And not as part of your standard medical treatment? Outside medical notes? Despite antivirals being the only treatment for viruses, standard medical care in America? So, why was it done in secret?

Anything ending in a ‘mab’ is a monoclonal antibody and ending in ‘vir’ is an antiviral yes?
And anything ending in ‘mab’ has been humanised using a mouse cell line yes?it’s slightly worrying that you have JVC as part of your username 😬😩

Pretty sure the hospital isn’t going to admit giving me Tocilizumab in secret.

Many people in the Uk have monoclonal Antibodies for rheumatoid arthritis.

JVC as initials that are important to me. No idea what you’re getting at there.

Antivirals and antibodies are not two distinct categories. Antibodies are proteins that white blood cells produce to destroy pathogens- that could be virally infected cells, bacteria, or even tumour cells. Antivirals are any drugs that can be used to treat viral infections. Some of those are monoclonal antibodies.

Monoclonal antibodies are sometimes, but not always, produced using a mouse lymphocyte that is fused with another cell to produce unlimited antibodies that can be extracted. Those antibodies are just tiny protein molecules that are identical to human antibodies.

Viruses are really, really difficult to treat but mAbs can be one pretty decent solution.

As a bit of an analogy to help understand the difference between cells and antibodies:

Oranges contain vitamin C (which is ascorbic acid- a type of molecule). Vitamin C isn’t an orange though- you could have a vitamin c infusion but that doesn’t mean they’re injecting oranges into your blood 🙂

As a clinician we know the saying 'if it's not documented it didn't happen'

Huge Apologies - i read it as JCV.
So sorry.

Antivirals have been used for decades in the NHS. There isn't anything secret about them.
I was retired and seriously ill myself during the whole covid epidemic, isolating at home throughout the whole thing, so I don't know much at all about what trials were being done.
However, screening and including/excluding patients wrt clinical trials is very straightforward and follows a standard process in the NHS.

So you’re saying they’ll say there was no lady from clinical trials?

Sorry to hear you were so poorly @endofthelinefinally . I hope you’re better now.

Do you mean you think that the trials lady coming in should have been documented?

The iv drug they gave you would be documented on your drug chart, not necessarily in your notes though and any information about it may be in your notes or drug chart somewhere. If you didn't want to take part in the trial it may have just been documented as a decline online without your details as part of the trial . There will be info about the trial, but it may not show up individual patients who didn't take part.

@TraitorsGate it’s really strange though that every other drug, injection, procedure IS in my paper notes. Every single thing.
I’ll request my digital notes next week and have a look.

I was a clinical trials co-ordinator for over a decade in a university hospital. Part of my role would be talking to patients in wards and clinics about participating in trials. Yes, I would have made a short entry in the paper notes (they were still used back then as the main record) along the lines that I had spoken to the patient, briefly explained the trial, offered further information and patient declined/accepted. Prior to speaking to the patient I would have approached their consultant, asked permission to pre-screen their records and permission to to approach them. As a nurse employed by the hospital I would have adhered to all aspects of confidentiality.
I cannot speak for why an outside person employed by a pharmaceutical or research company would be approaching a patient, except to say that I would not have allowed that to happen on my watch.

What drug isn't written in your notes, it must have been on your prescription chart for pharmacy to dispense it and the nurses to administer it, ask for your drug chart. With covid was Wellcome asked to come into hospitals and Co ordinate alongside clinicians to offer some new covid drugs, the RECOVERY protocol is online but its too long to post here. We're nurses involved with the covid trials in 2020 /21?

That’s very interesting @endofthelinefinally thanks for the information.

@TraitorsGate so it was Tocilizumab (the monoclonal antibody) that wasn’t written into my discharge paperwork and it isn’t written in my paper notes either, as far as I can see. All other drugs such as Dexamethasone, Antibiotics, paracetamol, Insulin etc were ALL added into my paper notes and the GP discharge paperwork.

When I asked what the new IV bag was for, the nurse who gave me the Tocilizumab IV told me that it was an antiviral given to all covid patients. She didn’t name the drug or tell me it was an off license drug for covid, which it then was.