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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

239 replies

Onionbhajisandwich · 14/01/2025 18:53

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??

OP posts:
Fluufer · 16/01/2025 21:40

Lostcat · 16/01/2025 21:35

I don't see why HIV/Hepatitis ought to be singled out

because of the very heavy social and psychological consequences of HIV diagnosis that still exist. Most particularly because of the history of the disease and the heavy stigma that still prevails. It’s not just one more trivial health matter, it just isn’t. Furthermore, although HIV is absolutely not the death sentence it once was- people have normal life expectancy and healthy lives, it’s still an incurable , life- long condition that requires significant medical management , adherence to medication (side effects), monitoring , etc . It’s not a small thing receiving an HIV diagnosis, even in 2025. Testing needs to be on the basis of informed consent, as is a legal and ethical requirement for other serious diagnoses.

Edited

No, sorry. You're wrong. There is such strong feeling around HIV precisely because we lean into this irrational fear. It is treatable now, but only once detected. Undetected, people get very sick and it spreads.
Testing needs to be routine, alongside robust support for those who receive a positive diagnosis. Nothing else will end transmission and stigma.

MrsAvocet · 16/01/2025 21:40

Just for interest what is about BBV that requires specific consent ?
From my perspective it is not the fact that it is testing for BBV that is the issue at all, it is the fact that it is a screening programme separate to the clinical care required by the patient at the time. I'd feel the same if it was screening for any other condition not directly relevant to the individual's current illness.
There are no doubt very sound reasons for the scheme but that doesn't negate the right of the individual to know that they are participating. Current methods of communication don't seem to be fully effective. I've just read the NHS England Good Practice guide for implementation of the scheme and it does recommend the use of verbal prompts by staff in addition to public facing written information* *in emergency departments. If that recommendation was being followed there wouldn't be an issue as far as I can see, but if this thread is anything to go by it isn't, or at least not consistently.

Lostcat · 16/01/2025 21:38

debbiewest0 · 16/01/2025 21:30

Nor was it ethical to give thousands of people contaminated blood.
Yet they received it, were given that unexpected news, then lived with the illnesses and the stigma and some died from it and still are.

so as a mark of respect, I think helping stop the spread in whatever way is quickest and easiest is a great option,

Yes helping stop the spread is vitally important. But we can absolutely do that while preserving the dignity and humanity of people infected with HIV.

ARealitycheck · 16/01/2025 21:37

Fluufer · 16/01/2025 21:29

No, actually your attitude is appalling. Fear of HIV isn't a diagnosable mental health issue. If you're capable of finding studies around the stigma, you're more than capable of finding the data to challenge your own misconceptions.
You need to ask yourself why you don't want to.

Phobias exist for all manner of things including meeting people with HIV.

Again I will emphasise I would not go running out the room screaming. But yes, when suddenly somebody told me they had aids, I took a step back, quite simply because of that illogical fear.

Thousands of people in the UK are so terrified of a spider in the bathroom they need somebody to remove it. It is entirely illogical, they aren't going to hurt you. But the fear still exists.

Lostcat · 16/01/2025 21:35

Fluufer · 16/01/2025 21:27

I don't agree. It's a public health matter as much as an induvial one. Unless we're going to go down the route of itemised consent forms for each and every Drs visit, I don't see why HIV/Hepatitis ought to be singled out.

I don't see why HIV/Hepatitis ought to be singled out

because of the very heavy social and psychological consequences of HIV diagnosis that still exist. Most particularly because of the history of the disease and the heavy stigma that still prevails. It’s not just one more trivial health matter, it just isn’t. Furthermore, although HIV is absolutely not the death sentence it once was- people have normal life expectancy and healthy lives, it’s still an incurable , life- long condition that requires significant medical management , adherence to medication (side effects), monitoring , etc . It’s not a small thing receiving an HIV diagnosis, even in 2025. Testing needs to be on the basis of informed consent, as is a legal and ethical requirement for other serious diagnoses.

Londonrach1 · 16/01/2025 21:34

I was slightly shocked when I checked my notes when pregnant to find they do hiv etc test too. Barely in mind id never done drugs, hadnt had any blood transfusion and dh and I had only slept with each other. Both were negative but I was shocked it been tested without me knowing. I said nothing but it shocked me. Yanbu. Did they tell you at the time.

debbiewest0 · 16/01/2025 21:33

ARealitycheck · 16/01/2025 21:30

Testing for things like Downs syndrome during pregnancy is offered and not always taken up on by the mother to be. By that rationale, she shouldn't deny this test?

You are now comparing Down’s syndrome to HIV?

Fluufer · 16/01/2025 21:31

ARealitycheck · 16/01/2025 21:30

Testing for things like Downs syndrome during pregnancy is offered and not always taken up on by the mother to be. By that rationale, she shouldn't deny this test?

Downs syndrome is not a communicable disease.

ARealitycheck · 16/01/2025 21:30

Fluufer · 16/01/2025 21:27

I don't agree. It's a public health matter as much as an induvial one. Unless we're going to go down the route of itemised consent forms for each and every Drs visit, I don't see why HIV/Hepatitis ought to be singled out.

Testing for things like Downs syndrome during pregnancy is offered and not always taken up on by the mother to be. By that rationale, she shouldn't deny this test?

debbiewest0 · 16/01/2025 21:30

Lostcat · 16/01/2025 21:24

Absolutely no one is saying that there shouldn’t be testing for HIV. It should be widespread, available, accessible as possible. Encouraged , de stigmatised. But it should be carried out on the basis of patient knowledge, advisement/ education and informed consent. Mandatory / sleuth testing without informing people does nothing to combat stigma, and can be extremely traumatising for those who end up with an unexpected positive result / diagnosis that they didn’t even know they were being tested for and all the consequences that brings . It’s simply not ethical.

Edited

Nor was it ethical to give thousands of people contaminated blood.
Yet they received it, were given that unexpected news, then lived with the illnesses and the stigma and some died from it and still are.

so as a mark of respect, I think helping stop the spread in whatever way is quickest and easiest is a great option,

Fluufer · 16/01/2025 21:29

ARealitycheck · 16/01/2025 21:24

That is akin to telling an agoraphobic to give themselves a shake and get out the house. Rude and unhelpful.

No, actually your attitude is appalling. Fear of HIV isn't a diagnosable mental health issue. If you're capable of finding studies around the stigma, you're more than capable of finding the data to challenge your own misconceptions.
You need to ask yourself why you don't want to.

Fluufer · 16/01/2025 21:27

Lostcat · 16/01/2025 21:24

Absolutely no one is saying that there shouldn’t be testing for HIV. It should be widespread, available, accessible as possible. Encouraged , de stigmatised. But it should be carried out on the basis of patient knowledge, advisement/ education and informed consent. Mandatory / sleuth testing without informing people does nothing to combat stigma, and can be extremely traumatising for those who end up with an unexpected positive result / diagnosis that they didn’t even know they were being tested for and all the consequences that brings . It’s simply not ethical.

Edited

I don't agree. It's a public health matter as much as an induvial one. Unless we're going to go down the route of itemised consent forms for each and every Drs visit, I don't see why HIV/Hepatitis ought to be singled out.

Lostcat · 16/01/2025 21:24

Fluufer · 16/01/2025 21:19

Illogical stigma is no reason not to test for communicable disease.
The very reason HIV is still being transmitted is because people are not testing.
You're a grown up, you acknowledge it is illogical, so go off an work on your attitude. Educate yourself instead of perpetuating misconceptions.

Absolutely no one is saying that there shouldn’t be testing for HIV. It should be widespread, available, accessible as possible. Encouraged , de stigmatised. But it should be carried out on the basis of patient knowledge, advisement/ education and informed consent. Mandatory / sleuth testing without informing people does nothing to combat stigma, and can be extremely traumatising for those who end up with an unexpected positive result / diagnosis that they didn’t even know they were being tested for and all the consequences that brings . It’s simply not ethical.

ARealitycheck · 16/01/2025 21:24

Fluufer · 16/01/2025 21:19

Illogical stigma is no reason not to test for communicable disease.
The very reason HIV is still being transmitted is because people are not testing.
You're a grown up, you acknowledge it is illogical, so go off an work on your attitude. Educate yourself instead of perpetuating misconceptions.

That is akin to telling an agoraphobic to give themselves a shake and get out the house. Rude and unhelpful.

debbiewest0 · 16/01/2025 21:23

Lostcat · 16/01/2025 21:17

That PP never said she wanted to live with that stigma- she said that it’s still real and people feel it. The stigma absolutely shouldn’t be there - treatments have completely transformed the disease since the 80s , but society has absolutely not caught up. There was an awful mumsnet post only a couple of months ago - I can’t remember the exact details but it was something about going on a date with someone HIV positive who didn’t disclose their status in advance- or something like that- and it was basically one long pile on of people saying that the person should disclose in advance and they would never consider dating someone with HIV. Never mind the new data on zero risk of transmission if on proper treatment/ undetectable viral load etc, people didn’t care or want to hear it. I was one of the few people pointing out the abhorrence in what people were saying and got piled on. the stigma , phobia, unpleasantness directed against people living with HIV was brazen and unashamedly out there, - the majority standpoint in fact. To pretend this isn’t the case is bullshit.

Edited

I’m not pretending it isn’t there. It’s awful.

But the poster clearly said they would step back.

I think it’s appalling the stigma is still there and stand by that and that I wouldn’t want to meet them. I won’t apologise for the low opinion I have of people who still think like that.

Fluufer · 16/01/2025 21:19

ARealitycheck · 16/01/2025 21:13

https://nat.org.uk/news/new-polling-shows-hiv-stigma-still-widespread/

It isn't just me. It is large swathes of the population. The stigma towards those with HIV & aids still exists and never went away. As I said in my post, I know there is no logical reason for my or others thinking there is a risk to ourselves.

But when this level of concern still remains, I'd suggest the population is not ready for HIV testing without consent being reasonably sought.

Illogical stigma is no reason not to test for communicable disease.
The very reason HIV is still being transmitted is because people are not testing.
You're a grown up, you acknowledge it is illogical, so go off an work on your attitude. Educate yourself instead of perpetuating misconceptions.

Lostcat · 16/01/2025 21:17

debbiewest0 · 16/01/2025 21:03

I hope to goodness I never meet you, I cannot fathom how people still wish to hold on to these stereotypes and stigmas from the past. Surely you have been educated enough since those adverts and the 80s to learn that people with HIV and Hepatitis are the same as everybody else and want compassion not someone stepping back.

I am in my 40s and would most certainly not take a step back. As you say, people living with blood viruses already have had to deal with that stigma already and I most certainly would not be adding to their discomfort.
Do you not learn from history? All sorts of things have changed since the 80s - new advice on using car seats/ not smoking/ using sun cream / new treatments etc etc. I’m sure you don’t hang on to everything you did in the 80s do you?

So do you really want to still live with outdated views on blood viruses? And fuel the stigma that clearly still lives on?

That PP never said she wanted to live with that stigma- she said that it’s still real and people feel it. The stigma absolutely shouldn’t be there - treatments have completely transformed the disease since the 80s , but society has absolutely not caught up. There was an awful mumsnet post only a couple of months ago - I can’t remember the exact details but it was something about going on a date with someone HIV positive who didn’t disclose their status in advance- or something like that- and it was basically one long pile on of people saying that the person should disclose in advance and they would never consider dating someone with HIV. Never mind the new data on zero risk of transmission if on proper treatment/ undetectable viral load etc, people didn’t care or want to hear it. I was one of the few people pointing out the abhorrence in what people were saying and got piled on. the stigma , phobia, unpleasantness directed against people living with HIV was brazen and unashamedly out there, - the majority standpoint in fact. To pretend this isn’t the case is bullshit.

ARealitycheck · 16/01/2025 21:13

debbiewest0 · 16/01/2025 21:03

I hope to goodness I never meet you, I cannot fathom how people still wish to hold on to these stereotypes and stigmas from the past. Surely you have been educated enough since those adverts and the 80s to learn that people with HIV and Hepatitis are the same as everybody else and want compassion not someone stepping back.

I am in my 40s and would most certainly not take a step back. As you say, people living with blood viruses already have had to deal with that stigma already and I most certainly would not be adding to their discomfort.
Do you not learn from history? All sorts of things have changed since the 80s - new advice on using car seats/ not smoking/ using sun cream / new treatments etc etc. I’m sure you don’t hang on to everything you did in the 80s do you?

So do you really want to still live with outdated views on blood viruses? And fuel the stigma that clearly still lives on?

https://nat.org.uk/news/new-polling-shows-hiv-stigma-still-widespread/

It isn't just me. It is large swathes of the population. The stigma towards those with HIV & aids still exists and never went away. As I said in my post, I know there is no logical reason for my or others thinking there is a risk to ourselves.

But when this level of concern still remains, I'd suggest the population is not ready for HIV testing without consent being reasonably sought.

New polling shows HIV stigma still widespread

https://nat.org.uk/news/new-polling-shows-hiv-stigma-still-widespread

debbiewest0 · 16/01/2025 21:03

ARealitycheck · 16/01/2025 15:08

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 hope to goodness I never meet you, I cannot fathom how people still wish to hold on to these stereotypes and stigmas from the past. Surely you have been educated enough since those adverts and the 80s to learn that people with HIV and Hepatitis are the same as everybody else and want compassion not someone stepping back.

I am in my 40s and would most certainly not take a step back. As you say, people living with blood viruses already have had to deal with that stigma already and I most certainly would not be adding to their discomfort.
Do you not learn from history? All sorts of things have changed since the 80s - new advice on using car seats/ not smoking/ using sun cream / new treatments etc etc. I’m sure you don’t hang on to everything you did in the 80s do you?

So do you really want to still live with outdated views on blood viruses? And fuel the stigma that clearly still lives on?

SuzieQ300 · 16/01/2025 20:20

You get those tests if you give blood too. But I do think it should be an option in your case.

ARealitycheck · 16/01/2025 20:18

Neurodiversitydoctor · 16/01/2025 20:06

I think the problem here os one of perception. A doctor says I think it would be a good idea to extubate/ fashion a tracheotomy or get a DNAR in place. The family 9 times out of 10 or maybe even 99 times out of a hundred say " yes that sounds sensible/ you are the expert " or something along those lines. The family erroneously belive their cinsent has been sought and given. The reality is the clinician was informing not asking.

Again I can only speak from experience and it was around 30 years ago when I think back. But my father was asked to give permission for a tracheotomy to be carried out, they pointed out the risks of inability to speak afterwards, along with the possible benefits.

If situations like the lady before and her baby in pitu are common. I'd suggest there does seem to be a mentality among medics that only they no best and we shouldn't question or delay. That is a serious concern for us patients, especially when the subject in this thread is lack of clarity when running a test for HIV without reasonably finding out if a patient gives consent.

Lostcat · 16/01/2025 20:15

Neurodiversitydoctor · 16/01/2025 20:06

I think the problem here os one of perception. A doctor says I think it would be a good idea to extubate/ fashion a tracheotomy or get a DNAR in place. The family 9 times out of 10 or maybe even 99 times out of a hundred say " yes that sounds sensible/ you are the expert " or something along those lines. The family erroneously belive their cinsent has been sought and given. The reality is the clinician was informing not asking.

Yes I understand.
I was replying to the concern about the culture and policy in the nhs around informed consent. I think it’s a disgrace.

Neurodiversitydoctor · 16/01/2025 20:06

Lostcat · 16/01/2025 19:58

I find that worrying in terms of how the NHS is treating the concept of consent

It really is a problem in the NHS- both in terms of culture and policy.

I think the problem here os one of perception. A doctor says I think it would be a good idea to extubate/ fashion a tracheotomy or get a DNAR in place. The family 9 times out of 10 or maybe even 99 times out of a hundred say " yes that sounds sensible/ you are the expert " or something along those lines. The family erroneously belive their cinsent has been sought and given. The reality is the clinician was informing not asking.

Lostcat · 16/01/2025 19:58

ARealitycheck · 16/01/2025 19:23

Well I can only speak from experience, and my family most definately were asked for permission to remove the breathing tubes and create a tracheotomy. This was a few years go granted, but if that is something else that has changed in recent years, then I find that worrying in terms of how the NHS is treating the concept of consent.

I find that worrying in terms of how the NHS is treating the concept of consent

It really is a problem in the NHS- both in terms of culture and policy.

Destiny123 · 16/01/2025 19:49

Neurodiversitydoctor · 16/01/2025 19:28

As others have said unless there is a LPOA decisions are taken in best interests- it has been this way dor at least 10 years.

Yeah has been the case since 2009 when I started uni. Been working on icu since 2015