To think consent is required to do a HIV or hepatitis blood test??

[Onionbhajisandwich]

Hi all,

Please tell me if I’m wrong here but do the NHS require consent to test for HIV or Hepatitis?? I would have thought they did.

I attended A and E last month (sent by my GP) as I had suspected pneumonia. I received a text today stating this:

“You recently attended the Emergency Department. We are part of an NHS programme testing for HIV, Hepatitis B and C but your test wasn't processed due to technical issues. Please attend one of the walk-in blood test centres, Mon - Fri 8am- 4.30pm. We requested the repeat test electronically, so please give your NHS number on arrival. We will only contact you if the test is positive and you need care”

I’m a bit surprised that they can screen you without consent - as far as I knew the blood tests that they did we for infection markers and a full blood count, along with one that checks for clotting.

I won’t be attending to get the tests done as it’s within work time but aibu to think this isn’t ok??

The relevance of times when there was no treatment for AIDS is only that there were more people who did not want testing for HIV, especially if they were asymptomatic, because they thought it would be better to be ignorant of a fatal illness for as long as possible.

But that’s not where the need for consent comes from. Informed consent is needed, when possible, for all healthcare testing and treatment. It is a bedrock of ethical practice.

The NHS does not have a stellar record on consent. They fudge things for all sorts of reasons. But that makes them unethical - not consent unreasonable.

Despite modern changes in treatment or attitudes, would I want eg my employer to know I have had a test for HIV. Probably not.

They know I'm a regular blood donor. Therefore they could work out I've been tested many times (I've made over 50 donations.) I don't remember when they first started testing for HIV, but it's been many years. (They also test for syphilis, more than one type of hepatitis, and a couple of other things - anyone interested can check on their website.)

Still doesn't make any sense to me.

By not knowing you have it, doesnt mean you don't have it. It's not like the test infects you?

Options are

Testing

1. You were negative. Test negative... zilch change to your life
2. You were positive and didn't know it. You're life has pretty much been saved

No testing

1. No impact on your life as per first case
2. You remain ignorant and at risk of immunocompromise diseases and early death

By not testing, doesn't mean you don't have it in option 2, it just means you're ignorant of the fact that you have it, which helps noone

Spose the only reason that might appeal is if you think its highly likely you have it and you want to buy life insurance before making it official, but that's prob borderline insurance fraud tbh

They should have told you 100%, but it's most likely an honest mistake that they forgot.. I've never worked in a trust that does routine screening but I can guarantee that if I was working in the fire fighting situation that a&e drs are having to manage atm with patients filling corridors and running from emergency to emergency... then if I patient asked what tests I was requesting, I could accidentally tell them what "I personally" was testing for, and forget that I worked somewhere where everyone is screened, as it is unlikely to be at the forefront of my mind

Hope you're better soon x

I'm not against screening for these conditions but I do think that the way it sounds like it is being done raises some ethical questions.
Normally if you have blood taken, whilst you may not know the details of every test that will be done, you can generally assume that they're something to do with the reason that you're at the hospital/clinic, and that something you have said, or something they have found on examination has prompted those tests. So for instance, I had bloods taken at the GP recently and when I got the results I saw that she had requested HbA1c and cholesterol. Not absolutely specifically related to what I was there for, but I am a chubby late middle* *aged woman so definitely at risk of both diabetes and high cholesterol, hence those tests were very relevant to me. But if I'd seen HIV and Hep C had been done I would have been surprised as I don't have any particular risk factors for those. I would not have objected to being screened but would have liked to have been asked.
I can't think of any other screening programme in this country where you don't get individual information prior to being screened and where you don't make an active decision to participate. Whilst there often isn't a formal consent process, you can be pretty confident that if someone shows up for a mammogram apointment or puts their poo in the post then they do want to be screened.
I think presumed consent on the basis of posters on the wall in A&E is a bit dubious personally. There are all kinds of reasons why someone may not have been able to read, understand or retain that information and it doesn't sound as if any checks on that are then being done. I agree that from a public health perspective there is probably very useful data being collected and that some people will benefit enormously if treatable conditions can be found, but a patient's right to autonomy is fundamental. If we're going to accept "It's for your own good/the greater good and you were having blood taken anyway, you didn't need to be told specifically" in this instance then why would the same principle not apply in other circumstances? Where's the line?
It is clear from some of the posts on this thread that the current level of information being provided is inadequate. Anyone posting here is clearly at least literate and has reasonable understanding but even so there are people who have found out they've been screened without knowing it. Presumably there are many more who have not realised they've been screened at all, and vulnerable people are going to be particularly at risk of that happening. Nothing wrong with screening for blood borne viruses in my opinion but it sounds like there could definitely be a big improvement in the public information/consent side of things.

It’s those vulnerable people who exactly need the tests. Those who have not followed the news and do not know about the infected blood enquiry and the thousands of people who were infected with HIV and Hepatitis.

so that these people can be informed and helped.

they’re not just collecting some public health data, they’re trying to put an end to the biggest NHS scandal in history.
which is going to rightfully pay out billions of pounds to those affected.
so doing some tests to put an end to the spread will save money long term.

Errr so I just let my icu patients die cos I can't get consent to test or treat them?

Doesn't the GMC itself say that patients shoulf be involved in decison making abou their treatment and care "if they can". Which presumably means that in ICU or other situations where informed consent can't be sought (because the patient is not capabale of consenting) then you can go ahead. If we are going to move to a blanket "presumed consent" approach then the culture of UK medicine needs to radically change. There is far too much closing ranks and obstruction when questions are asked and complaints made in the NHS at the moment.

If people were to ask themselves, if somebody told them they were HIV positive or had Aids today, would they take a step back. For most of us, certainly over the age of 40, I believe we would. I was in that position in a social setting around 8 years ago.

Now I know the chances of infection without intimate contact border on zero, but there is still that stigma.

To pick up on your comment towards homosexuality and HIV. I have a friend who was in the gay scene in London at the height of aids. The prejudice and violence gay men faced was immense. Including being thrown out of rented houses if the landlord found out they were gay. This was happening well within living memory of a lot of us.

Perhaps some posters and the NHS need to accept that the fear of being diagnosed due to generational prejudice is still real for many middle aged people in particular.

"I’m a bit surprised that they can screen you without consent - as far as I knew the blood tests that they did we for infection markers and a full blood count, along with one that checks for clotting."

So you give consent for a blood test to be tested for infection markers - what exactly are you disputing? Did you want a checklist for every single marker they were going to test for? Seriously?

But as you know in ICU there are many things that cannot just be done without consent from the next of kin. Or a welfare decision made by the team looking after the patient if no next of kin exist.

A common example would be removing breathing tubes to see if a patient will respond. It may be decided that unless the patient can sustain breathing after a certain period in a coma, there is an unlikeliness they will recover.

Fear of being diagnosed is exactly why more routine testing is so important.
Prejudices can't be overcome if we lean into them.

😧I have no words....really you would take a step back ?!?! I cannot begin to understand this at all.

I don't think my reaction is all that unusual. A great many of us remember well the scary advertising of aids. We can remember film wards of people dying on the news. We are of the time where there was a fear that did encourage the use of condoms but didn't aleviate the concern it may be passed in other ways like kissing.

One of the aids or gay charities at one point did point out that the fear generated by the aids adverts perhaps had been to succesful.

Put that into context into more recent events, a great many people have health anxiety when they hear somebody coughing in a shop today. That is despite the chances it being just the usual bugs that have always gone round, and are entirely treatable even if you get it.

I suspect you wouldn’t have the same objection if they routinely tested for eg, meningitis, diabetes, lupus or whatever. But the stigma of conditions like HIV is where your issue lies. But that’s all they are, conditions.

It was tongue in cheek, I've worked in icu for 5y.

No next of kin (except for minors) can consent to anything unless they have power of attorney for health. 95% of our decisions are best interest ones as very few people have poa

Misconception is not a good reason not to test.

I've been in the position as the relative of somebody in ICU and unable to give consent due to induced coma. The team caring for her most definately asked our permission to remove breathing tubes. As well as carrying out a tracheotomy to insert a breathing tube directly into the windpipe.

If you work in ICU, you must be used to the team asking next of kin to turn off the life saving machines when there is no hope. Without that permission depending on the wants of the family, you may need a court order to remove care.

Yes but that’s because your patients don’t have capacity!

'removing breathing tubes to see if a patient will respond' is not a thing we do on ICU. The next of kin also doesn't consent to procedures unless they have POA for health and welfare. Their opinion is sought and given very heavy weight, however if a patient is incapacitated and doesn't have a POA set up/ hasn't expressed their wishes then decision is based on medical best interests.

In your mind it is not a good reason. But for many people it remains a concern, and as I and everybody else has autonomy over our bodies, then it is something that should not be forced on people, even by implied consent.

Again using covid, remember the outcry about forced testing or vaccination cards to enter certain places. It was decided it was not ethically acceptable.

I am 48 I was 10 in 1986 yes I remember being terrified by Chernobyl and AIDS. But times change as I said up thread effective treatment for HIV has been around for 30 yrs. Yes it was a tragedy that all those young men in the West and 100,000s of women and children in the developing world lost their lives in the late '80s/ early 90s but those men would be in their 60s and 70's now. Even if you are the same age it has been a treatable condition for most of your adult life. To be so terrified of HIV in 2025 is anachronistic.

Sorry meant to quote this poster.

Unless you're going to demand a detailed breakdown, requiring individual consent for every other test ever carried out, it isn't bodily autonomy you are concerned about. It is prejudice. This is not like covid, it is not "forced" nor is entry to anywhere dependant upon having the test.

Your view may well depend on your personal experience and employment as well as location. A London based Dr have a completely different experience of life than a farmer from Wales.

I didn't say I was terrified, but in the inital being told a person has aids/hiv. There most definately is the shock factor for many.

Also to look at the post about medical staff making decisions without consent from next of kin. That is patently not the case or we wouldn't have had the circus with that boy who was clinically dead, but his mother had on life support for months with court cases.