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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:
New posts on this thread. Refresh page
HIVpos · 19/01/2025 10:29

Angrymum22 · 18/01/2025 18:52

HIV is probably the least of our worries. TB is on the increase and testing is rarely done routinely. I think it was one of the first diseases to have mass screening. It is now seen as a disease of the past, unfortunately due to increasing immigration it has seen an upturn.
Like HIV it can remain hidden for years, only surfacing when a patient seeks medical attention for chronic chest infections.
It is treatable, but the treatment is more complex due to antibiotic resistance.
Sporadic outbreaks are addressed and the local population are offered vaccination. But it won’t be long before we see the return of mass vaccination, I feel.

I was unaware about TB until the GP nurse who took blood to check if I was deficient in anything after being diagnosed with HIV told me she also worked in a TB ward and this was potentially far more infectious and treatment more complex. A friend’s family member was diagnosed with TB a few years ago with no apparent risk factors whatsoever, and returning to full health has been very slow

I take one pill a day - many people take far more than this for other health conditions. I have an undetectable viral load which means I cannot pass the virus on to any sexual partners. Other than a mini MOT twice a year at my clinic I live my life as before. My close friend has had more of a challenge in controlling her high blood pressure and trying different medication over the past few years.

HIVpos · 19/01/2025 10:08

ARealitycheck · 18/01/2025 16:09

I've been incredibly surprised and somewhat worried at how blase NHS staff seem to be with consent and supplying information towards patients.

@HIVpos Reading the reports you supplied, it comes across to me as a bit smoke and mirrors with regard to giving the actual numbers who were discovered without the knowledge they were being tested.

From what I can gather there were 65 cases of HIV out of 250,000 tests discovered. But it doesn't give the figure if any of these were done where the patient had been informed HIV was a possibility, can we test for it.

I’m not sure if that sort of information is included in other similar diagnosis results either.

I did a search on guidelines for opt out testing and found this from BASHH which explains how opt out testing for HIV and other BBVs is done.

https://www.bashh.org/_userfiles/pages/files/resources/rapid_guidance_optout_bbv_testing_in_eds_2024.pdf

Having read the above, if you’ve been to A&E and been tested for HIV without your knowledge, and are not happy with this suggest you contact the department and provide feedback. You could also write to BASHH and BHIVA - contact details via their websites.

https://www.bashh.org/_userfiles/pages/files/resources/rapid_guidance_optout_bbv_testing_in_eds_2024.pdf

Tryingtokeepgoing · 18/01/2025 22:39

ButterCrackers · 18/01/2025 18:01

If tests were billed to the patient, as happens in the US, then consent would be required because the patient could say no one asked me about this addition to my bill. The NHS requires consent for tests but it seems, from reading here, that medical professionals don’t always get consent.

Agreed; the NHS is shockingly blasé about consent, and also about (a) listening to complainants, (b) accepting when it’s done something wrong and (c) learning from its mistakes. Stonewalling and cover ups are its modus operandi. It could leant a lot from the aviation sector on the importance of transparency and an no-blame culture when investigating accidents and near misses. But, it’s too arrogant to do so.

Over a 25 year period my late husband had 13 complaints about non consensual procedures upheld, and had 6 medical negligence cases ether settled by the trusts or awarded in his favour by the courts. None of the actions were taken for money (which was just as well, as it wasn’t a lucrative path 😂) but to prevent others, less able or willing to take on the system, being wronged. But right to the end they’d never change their procedures or admit fault, even when the courts had ruled otherwise. However, he had some lovely consultants who said to me after his death that they’d hope that they’d have done the same in his shoes. The NHS is broken, and has been for decades when it comes to patient safety.

Greybeardy · 18/01/2025 19:48

Angrymum22 · 18/01/2025 18:52

HIV is probably the least of our worries. TB is on the increase and testing is rarely done routinely. I think it was one of the first diseases to have mass screening. It is now seen as a disease of the past, unfortunately due to increasing immigration it has seen an upturn.
Like HIV it can remain hidden for years, only surfacing when a patient seeks medical attention for chronic chest infections.
It is treatable, but the treatment is more complex due to antibiotic resistance.
Sporadic outbreaks are addressed and the local population are offered vaccination. But it won’t be long before we see the return of mass vaccination, I feel.

TB's only seen as a disease of the past by people who don't know anything about it. HCPs see it more as something that could be affecting almost anyone. Just like HIV.

Angrymum22 · 18/01/2025 18:52

HIV is probably the least of our worries. TB is on the increase and testing is rarely done routinely. I think it was one of the first diseases to have mass screening. It is now seen as a disease of the past, unfortunately due to increasing immigration it has seen an upturn.
Like HIV it can remain hidden for years, only surfacing when a patient seeks medical attention for chronic chest infections.
It is treatable, but the treatment is more complex due to antibiotic resistance.
Sporadic outbreaks are addressed and the local population are offered vaccination. But it won’t be long before we see the return of mass vaccination, I feel.

ButterCrackers · 18/01/2025 18:01

ARealitycheck · 18/01/2025 16:09

I've been incredibly surprised and somewhat worried at how blase NHS staff seem to be with consent and supplying information towards patients.

@HIVpos Reading the reports you supplied, it comes across to me as a bit smoke and mirrors with regard to giving the actual numbers who were discovered without the knowledge they were being tested.

From what I can gather there were 65 cases of HIV out of 250,000 tests discovered. But it doesn't give the figure if any of these were done where the patient had been informed HIV was a possibility, can we test for it.

If tests were billed to the patient, as happens in the US, then consent would be required because the patient could say no one asked me about this addition to my bill. The NHS requires consent for tests but it seems, from reading here, that medical professionals don’t always get consent.

ARealitycheck · 18/01/2025 16:09

I've been incredibly surprised and somewhat worried at how blase NHS staff seem to be with consent and supplying information towards patients.

@HIVpos Reading the reports you supplied, it comes across to me as a bit smoke and mirrors with regard to giving the actual numbers who were discovered without the knowledge they were being tested.

From what I can gather there were 65 cases of HIV out of 250,000 tests discovered. But it doesn't give the figure if any of these were done where the patient had been informed HIV was a possibility, can we test for it.

HIVpos · 18/01/2025 00:28

ARealitycheck · 17/01/2025 22:01

Of course getting that diagnosis will be a major shock. If you are tested for HIV with your knowledge, is similar to getting a biopsy for an easily curable cancer. You do mentally prepare yourself. For the diagnosis to come and you not even know you were being tested, then it will be far more traumatic.

I was several years ago tested for HIV due to an abnormal blood count when other likely conditions had been ruled out. It is an incredibly stressful time despite knowing I had never partaken in any risky behaviour. I cannot imagine what it would have done to my head, had that diagnosis come completely out the blue.

This is why I shared the experience of those who had been diagnosed by this process. They were quickly linked into care including peer support and given up to date information about life with HIV today.
Many people are diagnosed believing they haven’t taken part in any risky behaviour, which was also mentioned above by people who work/worked in HIV testing.

ARealitycheck · 17/01/2025 22:01

HIVpos · 17/01/2025 13:51

Interestingly in the people I've supported who have been diagnosed with HIV in an A&E some have been told that HIV was one of the tests being run and others weren’t. It doesn’t seem to make any more of a difference whether informed or not, it can be a shock regardless. However there should be good support in place for anyone diagnosed.

Of course getting that diagnosis will be a major shock. If you are tested for HIV with your knowledge, is similar to getting a biopsy for an easily curable cancer. You do mentally prepare yourself. For the diagnosis to come and you not even know you were being tested, then it will be far more traumatic.

I was several years ago tested for HIV due to an abnormal blood count when other likely conditions had been ruled out. It is an incredibly stressful time despite knowing I had never partaken in any risky behaviour. I cannot imagine what it would have done to my head, had that diagnosis come completely out the blue.

ARealitycheck · 17/01/2025 21:46

Perhaps this one from 2017 is more up to date:
WHO, UNAIDS statement on HIV testing services: new opportunities and ongoing challenges - 2017WHO-UNAIDSstatementHIV-testing-servicesen.pdf

It clearly says that those being offered HIV testing must give informed consent and that it must not be mandatory or coerced. As it appears these trusts are not making people aware they are being tested, Instead relying on posters stating implied consent then they are breaking the law.

After all, sitting in A&E in pain. Got eg a broken leg, the last thing you are pating any attention to is the plethora of posters saying everything from stop smoking to the symptoms of a stroke.

To think consent is required to do a HIV or hepatitis blood test??
HIVpos · 17/01/2025 17:11

LolaLouise · 17/01/2025 14:22

Quite sure i put that in the last paragraph of the post you quoted.

Sorry, seen it now. Must have been due to my responding after reading your post earlier before you edited it where I didn’t notice the edit when responding.
Hopefully the links will be useful to other HCPs who were unaware.

LolaLouise · 17/01/2025 14:22

HIVpos · 17/01/2025 13:39

Maybe depends where you live? Opt out testing, after being found successful in a few A&Es (mostly in London) has been rolled out across 46 A&Es in 33 areas in England with extra funding made available. This is being done with guidance on signposting and support in place in collaboration with HIV charities in the event of someone being diagnosed with HIV.

This will save the NHS money in finding people unaware of having HIV before it progresses to them becoming poorly and needing further treatment, passing it on to others and potentially save lives.

https://www.england.nhs.uk/long-read/emergency-department-opt-out-testing-for-hiv-hepatitis-b-and-hepatitis-c-the-first-100-days/

https://www.england.nhs.uk/blog/hiv-testing-is-essential-in-preventing-ill-health-onward-transmission-and-even-premature-death/

Edited

Quite sure i put that in the last paragraph of the post you quoted.

Lostcat · 17/01/2025 13:57

HIVpos · 17/01/2025 13:51

Interestingly in the people I've supported who have been diagnosed with HIV in an A&E some have been told that HIV was one of the tests being run and others weren’t. It doesn’t seem to make any more of a difference whether informed or not, it can be a shock regardless. However there should be good support in place for anyone diagnosed.

I have no doubt it would be a shock in any case. It can be a profoundly upsetting and destabilising diagnosis. a lot of that is no doubt due to outdated impressions/ ideas/ stigma- but that’s still unfortunately where people and society are today. It’s disingenuous to pretend otherwise. Any medical diagnosis that can affect a person’s life and psychological wellbeing in a profound manner should always carried out on the basis of informed consent, with an option to decline. This is a basic principle of an ethical and effective healthcare system.

HIVpos · 17/01/2025 13:51

Lostcat · 17/01/2025 08:54

When you are giving blood you are aware you are being tested!. That’s the whole point.

Of course informing any person of a diagnosis can be handled sensitively. But the point is they are receiving a diagnosis for a test they didn’t even know they were having. This provides the individual no time to process/ prepare themselves for a potentially devastating and life changing result. This is not ethical .

Interestingly in the people I've supported who have been diagnosed with HIV in an A&E some have been told that HIV was one of the tests being run and others weren’t. It doesn’t seem to make any more of a difference whether informed or not, it can be a shock regardless. However there should be good support in place for anyone diagnosed.

HIVpos · 17/01/2025 13:39

LolaLouise · 17/01/2025 03:38

I can also say as a A&E nurse, i have never seen mandatory screening of any kind within the department. Ive never added a blanket test on to blood draws. Ive ran HIV and hep tests when clinically relevent, but screening i have never seen. All our bloods are ran as urgent, as we need the results asap in order to treat, diagnose or discharge the patient, a screening test on top would cost the department an absolute fortune. We have already had some tests removed from what we initially request due to the costs of them, and they are now only ordered as add ons if clinically needed. Hoiwever, If a screening was added after as an add on by an outside agency within the hospital to everyone meeting a criterea who visited the department, then i agree, patients should be informed of screening and consent obtained. This is possible i guess. But in my experiences, that isnt something being done in the A&E itself, therefore they wouldnt know to consent the patient.

Edit to add, ive been looking online and certain trusts do have an opt out screening, if this is the case, it just be publically visable and communicated to patients who dont wish to have the screening. Looking at the trusts involved, im suprised it isnt the case in my trust, however until now it wasnt something i was even aware of happening.

Edited

Maybe depends where you live? Opt out testing, after being found successful in a few A&Es (mostly in London) has been rolled out across 46 A&Es in 33 areas in England with extra funding made available. This is being done with guidance on signposting and support in place in collaboration with HIV charities in the event of someone being diagnosed with HIV.

This will save the NHS money in finding people unaware of having HIV before it progresses to them becoming poorly and needing further treatment, passing it on to others and potentially save lives.

https://www.england.nhs.uk/long-read/emergency-department-opt-out-testing-for-hiv-hepatitis-b-and-hepatitis-c-the-first-100-days/

https://www.england.nhs.uk/blog/hiv-testing-is-essential-in-preventing-ill-health-onward-transmission-and-even-premature-death/

Lostcat · 17/01/2025 10:43

Fluufer · 17/01/2025 09:30

I have never said anything should be done without consent. Making something routine is not the same as mandatory or enforced. I know very well what the WHO say about it. (FIY, that is from 2007, AKA a long time ago).

Fair enough, I don’t disagree with you at all then.
I don’t have an issue with HIV tests being done as “routine” - eg routine part of pregnancy screening. I was objecting to them being done without people’s knowledge/ consent as that was the issue in the OP

Fluufer · 17/01/2025 09:36

Neurodiversitydoctor · 17/01/2025 04:31

I actually treated some one who caught Hep B sharing a razor, there are studies fron Brazil suggesting snorting cocaine can spread Hep C. But yes most are sexually transmitted.

Yes, I've encountered HIV being transmitted by reusing razor blades at a barbers before. Not in the UK though.
Fascinating about the cocaine! Never heard that before!

Fluufer · 17/01/2025 09:30

ARealitycheck · 16/01/2025 21:58

''My attitude is not draconian, it is evidence based and supported by organisation's the world over. It was my literal job for years.''

The WHO appear to disagree with you and even argue that doing so without ensuring consent may border on illegal.

www.who.int/news/item/30-05-2007-who-and-unaids-issue-new-guidance-on-hiv-testing-and-counselling-in-health-facilities

I have never said anything should be done without consent. Making something routine is not the same as mandatory or enforced. I know very well what the WHO say about it. (FIY, that is from 2007, AKA a long time ago).

Lostcat · 17/01/2025 08:54

debbiewest0 · 17/01/2025 08:49

Nobody said they’d be bombarded with the results. If screening detected the virus, then it would be sensitively handled. Same process practiced if someone was giving blood and it came up in their screening.

When you are giving blood you are aware you are being tested!. That’s the whole point.

Of course informing any person of a diagnosis can be handled sensitively. But the point is they are receiving a diagnosis for a test they didn’t even know they were having. This provides the individual no time to process/ prepare themselves for a potentially devastating and life changing result. This is not ethical .

debbiewest0 · 17/01/2025 08:49

Nobody said they’d be bombarded with the results. If screening detected the virus, then it would be sensitively handled. Same process practiced if someone was giving blood and it came up in their screening.

Lostcat · 17/01/2025 08:18

Neurodiversitydoctor · 17/01/2025 08:10

Stigma and outdated views as evidenced by this thread.

Right, ok. Do you therefore accept that an HIV diagnosis could therefore be an extremely difficult diagnosis to receive from the perspective of the individual receiving it? And that it could have profound consequences for a person socially, for their relationships , and for their psychological health? Do you therefore not think it’s important to provide that person information and an opportunity to consent to testing , before bombarding them with a potentially traumatic and life changing diagnosis?

EBearhug · 17/01/2025 08:17

Neurodiversitydoctor · 17/01/2025 08:10

Stigma and outdated views as evidenced by this thread.

Or because it's not a communicable disease. You don't catch diabetes from sleeping around. (You might not catch HIV that way, either, but getting it sexually is the most common way, and it's what people will generally assume)

Neurodiversitydoctor · 17/01/2025 08:10

Lostcat · 17/01/2025 07:49

“No one objects to this”.

Right. Ask yourself why that is.

Stigma and outdated views as evidenced by this thread.

Lostcat · 17/01/2025 07:55

sashh · 17/01/2025 05:14

I had some bloods takin in December. I have just looked on patient access and for the FBC (full blood count) this is what they tested. And that's just for one thing. I have diabetes and an underactive thyroid so they check those levels.

I can't imagine everyone taking blood having to list all of these.

Haemoglobin estimation

Total white cell count

Platelet count

Red blood cell (RBC) count

Haematocrit

Mean corpuscular volume (MCV)

Mean corpusc. haemoglobin(MCH)

Mean corpusc. Hb. conc. (MCHC)

Nucleated red blood cell count

Neutrophil count

Lymphocyte count

Monocyte count

Eosinophil count

Basophil count

None of these things are a test for a specific diagnosis with the kind of consequences that HIV diagnosis has. They might simply be a first step in identifying an area for further investigation.

Many of these tests might provide some evidence of cancer, for example, but look at the guidance on informed consent to cancer screening and diagnosis : https://assets.publishing.service.gov.uk/media/5c126d6040f0b60c8d6019e8/consent_to_cancer_screening.pdf

Informed consent is a very basic and essential component of an effective and ethic healthcare system.

https://assets.publishing.service.gov.uk/media/5c126d6040f0b60c8d6019e8/consent_to_cancer_screening.pdf

Lostcat · 17/01/2025 07:49

Neurodiversitydoctor · 17/01/2025 04:18

Diabetes has similar life long cosequences, people are tested for diabetes literally all the time, not always with explicit consent - no one objects to this.

“No one objects to this”.

Right. Ask yourself why that is.