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??

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?

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.

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.

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.

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.

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

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 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....

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.

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

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.

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"

Yes but HIV isn’t just another blood test. Although it’s not the disease it once was, it still carries a huge amount of stigma from its history- the very recent past, and for that reason a diagnosis can be life changing. It’s not something that should be imposed on someone without their knowledge or consent.

I don’t believe until you told us in your post anybody knew of your background except for your parents having only slept with each other.
So I don’t believe anyone was picking on you for your background.
but I stand by what I said originally and that others agree with, that your views (especially for someone in their 30s who should know better) are incredibly judgmental and wrong. you made it sound like you are better than those with HIV because those people only have it because they had sex or did drugs.
There are so many people still living with infection that they just don’t know about from transfusions, procedures or partners who also didn’t know etc etc. or from a tattoo parlour or just unknown blood contact - all good people too going about their lives peacefully.
so there absolutely should be testing for everyone even if you think you are negative. To save money in the long run by stopping any unnecessary spread and heartache. It’s not a waste of money and if you have seen the effects of HIV firsthand you should be keen for all to be tested to ensure correct medication can be given.

I don’t care if you thought you had it or not - but I do care that there are still people in this country with attitudes like yours proclaiming the reasons people get HIV and making it out to be a bad, wrong life choice or something. Those views belong in the bin.

But if they've already got it without knowing it's already been imposed upon them!!
Id take 100 hiv tests if it meant 1 person not catching it (i haven't got it I'm talking hypothetical). I've been tested for it plenty of times when pregnant and probably in other blood tests, always thought it was a good thing, and i wouldn't give a shit if my employer or anyone else knew id been tested for it. Until I read this thread it would have never occurred to me.
If you go to a&e with medical problems surely you would want to find out about any potential unknown underlying serious conditions, because the sooner you get a dx the sooner you get treatment.
Whether or not there's "no chance" you could have it its worth being tested, as pp have said there has been plenty of people who were convinced they had "no chance" and turned out they had it. Blanket testing is an amazing idea and the results have proved themselves.
If people are funny about stuff like this then maybe read up on every single NHS policy before using the services or go Private?

But if they've already got it without knowing it's already been imposed upon them!!

The testing and diagnosis shouldn’t be imposed on them.

Im absolutely for HIV testing, but it should be with a person’s knowledge and consent.

Then everyone should read every single opt-in / opt-out policy in UK health care and act accordingly. AFAIK organ donation has been changed to implied consent and people can choose to opt out of this should they wish.
I imagine there are many other policies i am unaware of.

No. Because as I said previously HIV test is not just another trivial detail of healthcare. It’s something that carries an enormous amount of weight/ stigma; although physiologically the disease is not what it once was, an hiv diagnosis can still still have profound/ life changing social and psychological consequences. Healthcare that has such significant consequences should always be carried out in the basis of patient knowledge and informed consent . This is a basic principle of an ethical healthcare system.

The government has acknowledge that compensation should be paid and is in the process of doing this https://www.gov.uk/infected-blood-compensation-estates.
Compensation for the infected blood scandal is a separate thing to the HIV care that we receive

All tests or treatments of any description should always and only be done after informed consent is given, when the person has capacity. Anything else is highly unprofessional and unethical.

It's routinely often 'opt out' in A&E, and there are posters publicising this in the waiting room.

From a public health point of view it's great. The idea of needing consent for an HIV test dates back to when there was no treatment for HIV. Thankfully there are excellent treatment options now.

The tainted blood scandal is an ongoing decades long national disgrace.
It is connected to treatment nowadays because people are still fighting for justice because HIV leading to AIDS and also Hepatitis was inflicted and then they were told to get lost and insulted, died without medical care. You might feel well taken care of but what’s ongoing needs to be said and compensation paid. It’s so shocking what people went through and are still going through as are their descendants.

OP I totally get what you are saying. In many aspects of healthcare, consent and patients' wishes go totally out the window. I find this wrong but staff and the system in general become desensitised to why it might be an issue and the power imbalance is huge. Just because some people prefer not to see the issue doesn't mean it isn't real. The best thing we can do is complain and gradually processes change some of this. What happened to you the way you describe it, I believe is wrong.