Blood tests, FHRGP, Southwark Council and HIV Testing

[jazzer]

I was contacted by FHRGP for an annual blood test, so I went to collect the paperwork (although Tessa Jowell centre have a system whereby all that is needed is a reference number, that's how Kings College Hospital arrange outpatient blood tests). Anyhow, on reading through the paperwork that had been handed to me, one of the blood tests was HIV Screening. This got me wondering, who or why would this be screened for? And if it's apparently Optional (right yeah), then why are patients not given the option to opt out of the screening.

I was told my the Practice Manager that Southwark Council request this to be done with all blood tests. I was flabbergasted and taken aback. WHY would Southwark Council be screening it's residents for HIV? and Why? And why was none of this explained when the blood test form was passed to me that it's optional (although apparently it should have been but was NOT). And now doubt FHRGP get paid for this!!!

From the data the council will know how many people will have tested positive or negative, assume they are gay and who these people are. Because surely if someone did test positive, the practice will need to contact them to offer them treatment. But it will certainly be an interesting conversation if they did not know they were being screened for HIV in the first place. This opens a can of worms for FHRGP.

So at the TJC funnily enough they took THREE vials of blood, and on asking why, I was to be screened for HIV although I had told the Practice Manager I did not want to be screened. So on the bottom of the form are the stickers which are attached to the vials. Again the process is not open and transparent. The lady wrote I did not want to be screened and I assume screening will not take place.

SO how about confidentiality and my human rights at FHRGP, I had to ask to go into a side room for the discussion at the practice as the Practice Manager tried to start the discussion in reception. NOT ON.

GDPR - the screen in reception where you book in for your appointment breaches GDPR regulations as you can see users date of birth, name and appointment time. If you can see the data, that is a breach of the regulations, I suggest the screen is moved to a more appropriate location or patients refuse to use it as it breaches GDPR.

[Nigello]

So, you’d prefer not to know you have a (somewhat) contagious - without treatment- and - without treatment - deadly disease, even once you had the option to say yes or no?

You also worry you’d be thought gay by a GP (who really couldn’t care less about your sexuality) if you - although very highly unlikely - were to test positive?

Take the test and help Southwark provide resources. The council isn’t interested in any one individual’s status but does want to know how many people are positive so as to be able to allocate or even request funds.

[SingingWilks]

https://www.eltonjohnaidsfoundation.org/worlds-first-hiv-sib-tests-120000-south-londoners/

https://www.kcl.ac.uk/news/new-social-impact-funding-model-has-improved-the-effectiveness-of-hiv-testing-scheme-south-london

[Moovart]

My understanding is that if you don't wish to have hiv screening you just need to cross out the test on the blood form and testing won't be done. It's your choice.

[Sally Eva]

I'm a blood donor and this test is done on all donated blood otherwise it can't be used. Not all people with HIV are gay (so what anyway).

If I were HIV positive I would certainly want to know.

[ontheedge]

Most new cases of HIV are found in women over 40. Women who perhaps have entered new relationships. Southwark has one of the highest rates of people with HIV.

[Lebanums]

Assume they are gay lol .... herein lies the issue.

The campaign going on now is to identify all those with the HIV virus and treat them so this generation will be the one to eradicate it.

[tiddles]

For me the issue is that private medical information is being shared with Southwark. Fine if NHS were undertaking this initiative but I absolutely would not trust Southwark with confidential info.

[jazzer]

My issues are two fold, this is being done WITHOUT consent, the Practice Manager admitted it is optional, the receptionist failed to tell me this or give me the option. So what is being done is underhand and on the sly.

I do not want my data shared with a third party (especially Southwark Council) without my consent.

FHRGP is breaching GDPR as the information on the appointment booking in screen can be seen by members of the public, The screen needs to be moved to a more appropriate position.

[joom]

I've just had some blood tests via FHRGP and the doctor mentioned the hiv screening and whether I wanted to opt out. Perhaps it wasn't mentioned to you but you still have the option with the form tick-boxes.

[Jenijenjen]

I also collected forms for blood tests from FHRGP the other day and the receptionist pointed out that the form included testing for hiv. I also remember receiving a letter from the practice some years ago saying that my data may be shared with third parties. This was the default position unless I advised the practice otherwise.

[Penguin68]

I also remember receiving a letter from the practice some years ago saying that my data may be shared with third parties.

 

This is not specific to the HIV testing, and I think pre-dates it. The FHRGP used to have a one page hand-out on the HIV test, explaining what it was about and how it was used. I believe Southwark (and possible other inner London Boroughs) has a very high incidence of HIV infections and uses this information to continue to scale the problem. Although the sample is biased (it doesn't include anyone sufficiently well not to need a (routine) blood test, and therefore excludes the fit well - who are most likely to be relatively young) it is not biased, particularly, otherwise by age or e.g. ethnicity. It is also not a self selecting sample (albeit you can opt out).

I am surprised they didn't use such a process to check for Covid-19 exposure once it was known so many asymptomatic cases existed.

[zack]

I can give you a lot of information, about this HIV testing opt out. I totally agree with you. I have had battles with this issue going back to 2017. I was tested twice, for HIV. Once without my consent, and the second time, I withdraw my consent, and, I still got tested. I battled St Thomas' Hospital, for over a year. To get the second test result removed. First test got stopped, as it was on it's way to the laboratory.

I suggest you put this bad experience on "Care Option" and you can also inform Healthwatch Southwark. I would also suggest you

inform the Care Quality Commission (You fill an online form in). And email the British HIV Association.

If you check up the General Medical Council, and the Department of Health. There is strict criteria on consent! As a bare minimum. You should ALWAYS be verbally consented. This does contradict this so called "opt out or notional consent.

Your G.P can be sanctioned by the GMC for not informing you verbally. And I suggest you quote their own consent policy to themselves.

All off the above I have done.

The other thing I have done is. I have placed on my health care records, at King's College Hospital, Guy's & St Thomas' Hospital and also my G.P'.

An "Advance Decision Statement"

Which is your right to withdraw from future treatment or diagnostic tests.

This is also stated in the NHS Constitution, also called living wills.

Now doing that, souly places the burden, on the clinician or the nurse.

To withdraw you from that HIV Test or any other test you list down

As of Arpil 2022. All London Hospitals Emergency Departments are testing for HIV and now Hepatitis B & C.

If any Hospital or G.P Surgery. Try fob you off, with there is a poster on the wall. Tell them, with their arrogant attitude. That what happens if the person is illiterate or if they are partially or fully blind.

Which then makes their, policy of posters "ONLY" incompatible with the 2010 Equalities Act, As blind people are a protected group.

And poster/leaflets. Are NO substitute for verbal consent !

The Institute of Clinical Excellence (NICE) NG60, states in

1.1.15 "Recognise that not all community settings are appropriate for providing testing services, for example because tests should be undertaken in a secluded or private area"

So, Practice Manages or receptionist should not be discussing this in public. I have also pointed this out in Emergency Departments ! PRIVACY!

Any clinician or Nurse. Who does not verbally consent me for the following tests, HIV & Hepatitis B & C. Will be referred to either the GMC or NMC to either be struck-off or sanctioned, without exception !

I would also suggest, opting out of the Local Care Records, now the (London Care Records) To block your G.P from viewing your Hospital blood results on line.

And think of opting out of your Summary Care Records (However, your HIV status should not be recorded on this).

[jazzer]

Thanks for your lengthy response.

FHRGP do not appear to have access to hospital blood test results, which is honestly absurd. "the left hand still does not not know what the right hand is doing"

There was no option of verbal consent, the lad behind the counter printed the form once and then reprinted it, I expect to include the testing but conveniently failed to mention it or give me the option to opt out. The lady who took the bloods at Tessa Jowell Centre proceeded to take three vials of blood and only when I pointed out I did not consent to HIV testing, that she wrote that on the form. I'm guessing it was still probably tested.

FHRGP approach was underhand and sly. However in their defence, the Practice Manager did agree that I should have been told and given the option to opt out. She said she was going to talk to both reception and clinical staff about this. I feel she realised an error had occurred through the "forgetfulness" otherwise known as the carelessness of the lad on reception.

[Penguin68]

It is certainly true that the Practice could be more clear in what they are doing here (and indeed I have said above that they did have a hand-out once) and it is also clear that they are treating us with some disdain in not even disclosing (unless forced) that they are requesting this additional and in most cases uncalled for test.

BUT - it is a good thing that local healthcare should be aware of anonymised data about certain illnesses which are dangerous, can be treated and have a cost-implication to NHS provision plans. Of course opting out should be clearer and easier and you may wish your own data not to be sold, (anonymised or not) to non-NHS third parties (there's a form for that). But I would personally be relatively happy that this is happening at all (and it was sort of reassuring, if not surprising, I must say, that it turns out I'm clear!)