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AIBU?

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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:
TikehauLilly · 15/01/2025 20:36

This thread has certainly educated me about historic attitudes and adversity the (mainly gay) community faced in my lifetime l, that was completely unaware of as was a child. Eg the mortgages and even saying you had been tested. Not to mention all those contracting it from infected blood.

It has also opened my eyes to views that seem outdated and still exist. Also those who are preaching about saving money because they "know" they don't have it ... have such narrow minded perspectives and can't see that the cost to do their test and blanket testing is a cost saving if in the long run more positive tests are caught and HIV treated. Opportunity cost for a zero "new case rate"

Lasttraintolondon · 15/01/2025 20:13

I think it's brilliant they test for this. Lots of people would prefer not to know and do anything to avoid ever checking - and then get a lot more poorly later on and expect treatment, or spread it to someone else without knowing.

Blanket testing will save the lives and health of countless people. It'll also save the NHS money in the long run.

JollyGreenSnake · 15/01/2025 19:53

OP, certain types of blood cancer are more common in HIV.... You could have been tested around the time of your cancer diagnosis.

Onionbhajisandwich · 15/01/2025 19:50

My issue isn’t what was or wasn’t tested for, my issue is that I did ask what they were checking for and neither HIV or Hepatitis were mentioned.

Had I been told, I would have had them (even though I know they will both be negative) it felt a bit secret squirrel and I just wondered to myself how many people will be oblivious to what they’ve been tested for.

As far as the pneumonia risk factors - I have a type of blood cancer so I know (and they know) exactly why I had pneumonia - it wasn’t some great mystery that needed solving.

Maybe I’m more annoyed than I should be about it as overall the experience was pretty horrible due to various factors (not least sitting in A and E all night) but that’s another post.

OP posts:
ButterCrackers · 15/01/2025 18:31

HIVpos · 15/01/2025 18:26

Not saying this is the case with you but many people believe that they couldn't possibly have HIV which is why everyone is tested. If you feel they were being patronising suggest you contact the relevant department and give feedback.
It's important that the project works well

The Tainted Blood scandal is still ongoing. People died without an acknowledgment and compensation. Why does the government not put right decades of appalling disregard? Once this happens I will believe in care for HIV being correctly managed.

HIVpos · 15/01/2025 18:26

MyDeepZebra · 15/01/2025 14:07

I was tested for HIV as a teenager at A&E with a scalded hand. It was part of a regional pilot.

I explained I would prefer they didn't as I was a virgin who had never taken drugs or used dirty needles, and my parents (due to strict religious beliefs) had been each others only sexual partners so no chance my mother passed HIV on at birth, so it was a complete waste of NHS time and resources. They went ahead anyway and staff member was quite rude to me about "judging lifestyles" and I also had to have a telephone appointment to discuss my (negative) result which appeared to have a 20 minute script that was another waste of NHS time and resources.

I went through it all recently again at A&E with heart issues and wasn't given the option of opting out. They'd already taken the blood and filled out the paperwork. I did say this time, "I think it's a waste of time as I know I don't have HIV, so if there's any chance it's going to delay me in A&E and waste resources, please could we not?" The sexual health HCA then paid me a call, to explain "it's not a moral or value judgement of your lifestyle, it's just a scheme that's being run at the moment..." and I got a long "education" on HIV, the scheme, why it was important, what would happen in the event of a positive result and to cut a long story short was manipulated into giving my consent after my bloods had already been sent to the lab. And probably manipulated into not complaining too.

And the same patronising HCA called me back for another long spiel with the (negative) results, how to keep safe in future etc.

I just had no option but to keep nodding and listening...I was more worried about the heart condition at the end of the day and just wanted to be appropriately cared for.

ETA...I was especially annoyed because the HCA was a general A&E HCA who'd taken on an additional sexual health/HIV screening role and I couldn't believe the waste of resources when there were very sick elderly people in the corridor next to me who were getting next to no attention or care, being left in their own waste, covered in vomit. It was heartbreaking. The NHS really gets it wrong sometimes.

Edited

Not saying this is the case with you but many people believe that they couldn't possibly have HIV which is why everyone is tested. If you feel they were being patronising suggest you contact the relevant department and give feedback.
It's important that the project works well

Neurodiversitydoctor · 15/01/2025 17:56

MyDeepZebra · 15/01/2025 15:27

I'm British Asian from a Muslim family.

My friend was a teenager when he met his late partner, who was over 20 years older than him. He's in his 50s now. I shouldn't have to justify myself, or any of my friends. I'm not a bigot. I've faced a lot of it though. I don't consider myself better than anyone because I had a strict background. It's just life.

You keep picking on me because I am from a different background to you so just to make it clear I won't be responding to you any further. No need to waste your energy anymore. We aren't going to get anywhere.

I find your friend's story incredibly sad the older man must have known ( or heavily suspected) he was HIV positive when they met in the early '90s PREP was availible from '98 or so . As others have said your friends life expectancy should be very close to those not living with HIV.

To be honest with this experience I find your attitude even more baffling- obviously still a lot of education needs to be done....

HIVpos · 15/01/2025 17:32

Opt-out testing for BBVs (blood borne viruses) in hospitals started in 2022 and were so successful in finding people with HIV and hepatitis who were unaware they had contracted it that the programme has now been rolled out to several other A&E departments . When admitted to A&E we might be tested for many things to rule anything out as the cause (other infection, liver, kidney etc) and these tests have been added.
https://www.gov.uk/government/publications/bloodborne-viruses-opt-out-testing-in-emergency-departments/emergency-department-bloodborne-virus-opt-out-testing-12-month-interim-report-2023#:~:text=The%20opt%2Dout%20testing%20in,provide%20a%20consultant%2Dled%2024%2
This is part of the drive to no new HIV diagnoses by 2030. To do this we need to find the several thousand people living with HIV in the UK and unaware that they have the virus until they become very poorly. Also link people back into care who might be impacted by the stigma of having HIV, often from people’s reactions or lack of knowledge. https://www.tht.org.uk/news/i-am-determined-generation-will-be-one-ends-new-cases-hiv-within-england-2030
Regarding previous comments about HIV – on effective meds it makes no difference to a travel insurance premium and has not stopped me getting life insurance, though did cost more than if I hadn’t got HIV – but then any other health condition would also have loaded the premium. As for the comment about HIV tests and employment, HIV testing would be regarded as the responsible thing to do in certain situations eg after a relationship finishing or just starting or when admitted to A&E to rule it out. It shouldn’t be something to be embarrassed or concerned about, not that it should ever have to be mentioned to an employer
Testing can easily be ordered online through a postal test.
As someone who contracted HIV in the first relationship I had following divorce from a long marriage 8 years ago in my 50s, and on behalf of others, it would be good if we could just normalise it.

“I am determined this generation will be the one that ends new cases of HIV within England by 2030.” | Terrence Higgins Trust

The Prime Minister’s speech at the reception he hosted at Downing Street to mark World AIDS Day,

https://www.tht.org.uk/news/i-am-determined-generation-will-be-one-ends-new-cases-hiv-within-england-2030

Destiny123 · 15/01/2025 16:07

Fluufer · 15/01/2025 15:47

It's not a waste of money. Imagine how much would go undiagnosed if the NHS took everyone's word for everything?
The reason you are objecting to HIV testing and nothing else is absolutely stigma. You having a friend with HIV does not change that.

You reminded me of the massive argument a woman has with our nurses at refusing to pregnancy rest preop as couldnt possibly be pregnant.... she did it to "shut us up", was positive. V awkward

ARealitycheck · 15/01/2025 16:06

Neurodiversitydoctor · 15/01/2025 14:25

But if you have been pregnant in the last 20 years or attended a sexual health clinic you will have had an HIV test. So many, many people will have.

My understanding is that consent was required to carry out an HIV test on pregnant Women. Even with implied consent, it would need to be communicated in some way that it was taking place. As for sexual health testing. You definately need to give consent for HIV to be checked. I last had one around five years ago and was asked.

BobbyBiscuits · 15/01/2025 15:56

No because it's a concern for the wider population if you have an infectious blood bourne disease. The nurses and doctors who treat you need to know.

You can't refuse to be tested for HIV? Why would anyone want to refuse it. Unless they didn't care that they passed it on to others. Which is awful.

Dulra · 15/01/2025 15:52

No issue with this. Contagious diseases are a public health issue and it is in all our best interests that people are aware of their HIV status and can ensure they protect people as a result. If you are against this screening I suggest you identify the trusts that don't do it or get your bloods done privately.

Fluufer · 15/01/2025 15:47

MyDeepZebra · 15/01/2025 15:19

It's nothing to do with stigma.

It's to do with personally not wanting to waste the time of the NHS when I know I don't have HIV (I don't. As numerous tests have shown). It's important to me because I am the only person in my family who doesn't work for the NHS and I know the hell they go through due to underfunding and pointless box ticking exercises. I get that it's not pointless for everyone and is important and has it's place. But there should be an option for individuals to make an educated choice for themeselves to opt out that is respected by staff.

It's not a waste of money. Imagine how much would go undiagnosed if the NHS took everyone's word for everything?
The reason you are objecting to HIV testing and nothing else is absolutely stigma. You having a friend with HIV does not change that.

BCSurvivor · 15/01/2025 15:28

When I was a kibbutz volunteer in the late 1980s/early 90s the last kibbutz I was on had a compulsory rule that kibbutz volunteers were tested for HIV every six months.
No privacy, no notice, I remember we all queued up in a line and results were given out as a slip of paper in laundry bags three weeks later.
I remember being horrified at the time but looking back it actually seemed like a sensible approach.
I had a child in the early 90s and was under the impression that during the 1990s anyone who was pregnant automatically got tested for HIV on the NHS but I could be remembering wrong?

MyDeepZebra · 15/01/2025 15:27

Neurodiversitydoctor · 15/01/2025 15:19

So your friend is much older than you ? No British born 30 year old should have lost a partner to AIDS, effective anti-retroviral treatment has been available on the NHS since the mid 90s.

To be honest I am shocked that some one so young would have your attitiudes. Did you not grow up in the UK ?

I'm British Asian from a Muslim family.

My friend was a teenager when he met his late partner, who was over 20 years older than him. He's in his 50s now. I shouldn't have to justify myself, or any of my friends. I'm not a bigot. I've faced a lot of it though. I don't consider myself better than anyone because I had a strict background. It's just life.

You keep picking on me because I am from a different background to you so just to make it clear I won't be responding to you any further. No need to waste your energy anymore. We aren't going to get anywhere.

MyDeepZebra · 15/01/2025 15:19

Fluufer · 15/01/2025 14:52

I spent several years working for a pilot rapid test scheme in a developing country, I couldn't begin to tell you the number of positive tests I have conducted on people who couldn't possibly have contracted HIV. Routine testing is designed to catch the people who don't think they have it, because anyone can get it, and people lie. You're taking it personally because of stigma.

It's nothing to do with stigma.

It's to do with personally not wanting to waste the time of the NHS when I know I don't have HIV (I don't. As numerous tests have shown). It's important to me because I am the only person in my family who doesn't work for the NHS and I know the hell they go through due to underfunding and pointless box ticking exercises. I get that it's not pointless for everyone and is important and has it's place. But there should be an option for individuals to make an educated choice for themeselves to opt out that is respected by staff.

Neurodiversitydoctor · 15/01/2025 15:19

So your friend is much older than you ? No British born 30 year old should have lost a partner to AIDS, effective anti-retroviral treatment has been available on the NHS since the mid 90s.

To be honest I am shocked that some one so young would have your attitiudes. Did you not grow up in the UK ?

MyDeepZebra · 15/01/2025 15:09

Neurodiversitydoctor · 15/01/2025 14:56

You must be abit older than me so at least in your 50's ? Your attitude is out of date and misplaced please educate yourself, it hasn't been the '90s for at least 25 years now.

I'm in my 30s.

RedRiverShore5 · 15/01/2025 15:03

I wouldn't mind at the A and E as I'm already there but I wouldn't be traipsing to the clinic because their test didn't work as it is about 5 miles away.

biscuitsandbooks · 15/01/2025 15:01

I really can't see the problem with this.

Hoover2025 · 15/01/2025 14:58

Destiny123 · 15/01/2025 14:55

Absolutely nothing to do with that in the slightest. We are taught to assume everyone has bbv as so many are undiagnosed. There's actually some evidence are more likely to have issues in known BBV as some change their behavior eg wear 2 pairs of gloves - which reduces your dexterity and means your more likely to needle stick yourself than if you just did your normal practice

The transmission rates are tiny anyway I've managed to get blood in my eye with hep b/c/hiv in it and didn't catch any

Jesus! That would have freaked me out.

You do a good job as healthcare. Thank you 😊

Neurodiversitydoctor · 15/01/2025 14:56

MyDeepZebra · 15/01/2025 14:46

It's not judgy.

It's just facts.

I couldn't have got through sex.

Needle use.

My mother being pregnant with me.

Or any other way that HIV is transmitted. So how could I have got it? It was a waste of time and resources for the NHS.

Which could have been better spent on my friend Ant who has been living with HIV for the past 20 years and watched his lovely partner die of it in the early 90s.

You must be abit older than me so at least in your 50's ? Your attitude is out of date and misplaced please educate yourself, it hasn't been the '90s for at least 25 years now.

Destiny123 · 15/01/2025 14:55

Hoover2025 · 15/01/2025 14:52

Im having routine bloods done every 5 mins atm (in a black hole between trusts which dont communicate or share results so everything has to be redone).

The results always show HIV, Hep status. I swear a few others as well! But app is frozen so cant see.

I always assumed it was more about the healthcare workers. They have a right to know if you have HIV or Hep surely as these are infectious blood diseases and they are working with your blood?

Absolutely nothing to do with that in the slightest. We are taught to assume everyone has bbv as so many are undiagnosed. There's actually some evidence are more likely to have issues in known BBV as some change their behavior eg wear 2 pairs of gloves - which reduces your dexterity and means your more likely to needle stick yourself than if you just did your normal practice

The transmission rates are tiny anyway I've managed to get blood in my eye with hep b/c/hiv in it and didn't catch any

Destiny123 · 15/01/2025 14:53

supercalifragilistic123 · 15/01/2025 14:44

HIV infections in heterosexual relationships are on the rise

https://www.gov.uk/government/news/rise-in-hiv-diagnoses-steepest-among-heterosexual-men-and-women

You are being tested because it is clinically indicated. Some places operate an opt out system because otherwise patients would refuse the test because of past stigma. The earlier patients are diagnosed the better the prognosis.

You can live a long and fulfilled life with HIV with the advances in modern medicine. Dr Pembleton wrote in the spectator a few years ago that he'd rather have HIV than diabetes.

When I did my hiv module at uni in around 2012 at uni we were told the prevalance in heterosexuals now actually exceeds homosexuals.

The life expectancy for hiv is higher than that of dm

Hoover2025 · 15/01/2025 14:52

Im having routine bloods done every 5 mins atm (in a black hole between trusts which dont communicate or share results so everything has to be redone).

The results always show HIV, Hep status. I swear a few others as well! But app is frozen so cant see.

I always assumed it was more about the healthcare workers. They have a right to know if you have HIV or Hep surely as these are infectious blood diseases and they are working with your blood?