Pregnancy Blood Tests - Did you have an HIV test?

[Motherofone]

I'm c. 7 weeks pregnant, and because I'm currently recovering from pneumonia my Dr suggested I have my 'booking in' blood test early to also check whether my infection is bacterial/viral. However when I turned up at the surgery today for my blood test, the Practice Nurse got all flustered and said had I been counselled for and agreed to the HIV screen, as my Dr had included it as one of the things to test the blood for on the form for the lab.
I was quite shocked, as it had not been discussed with me, and the Nurse went on to say that it was not usually their policy to include requests for HIV blood testing, as any results would then be included in my medical record at the surgery, and would HAVE to be disclosed if requested e.g. by a health insurer or employer etc. She recommended that if I wanted to be tested for HIV that I go to a separate clinic at the hospital where the result would then remain confidential to me.
Apparently some insurers/ financial institutions will ask on application forms if you've ever had an HIV test, but do not ask the context (e.g. for safe pregnancy reasons).
In the event, she couldn't get any of my veins 'up' enough to take the blood sample, so I have to go back again next week (urgh!), so I have a little time to think about things. I am not in a high risk category for HIV by any means, and am therefore 99.9% sure the result would be negative, but I'm more worried about any future impact of having to reveal that I've been screened for HIV.
Does anyone have any personal experience/views?

Motherofone, I've always been a little puzzled by this. I was under the impression that I was screened for HIV when pregnant but that it was anonymous. I was never given any counselling and wondered what would have happened if a positive result was found. Would the health authority then have an obligation to inform the patient as a public health matter? Maybe there is a maternity/health person out there who can enlighten.

Motherofone (nearly two!), I think your nurse has got her knickers in a bit of a twist here. Most routine pregnancy blood tests today now include HIV, unless you specifically request not to have it. It does not need to be included on any insurance forms. Given that they also test for syphillis and other STD's, I don't think anyone is casting aspersions on your good character, they just haven't explained that this is routine, unless you request otherwise. Hope this helps.

Yes, Tinker, I had exactly the same experience as you and the same thoughts went through my mind.

Motherofone, I think you are extremely wise to be very cautious about who does the HIV screening. When I've applied for mortages and life insurance, I have definitely been asked if I have had an HIV test. And for life insurance, I believe your medical records are consulted.

If in any doubt,I would advise you to avoid the even the separate hospital clinic and take a private test, if you feel you must. You need to ask your doctor more questions on this. Would an anonymous test like Tinker and I have had do for you instead?

BTW I think it is pretty awful of your doctor to arrange a personal test without counselling you first.

its routine now to screen for HIV but they don't normally tell you its been done. Its an easy way of getting some, limited, information about the prevalence in the population. I'll see what I can find on DofHeath websites.

I was told when I had my tests they were just starting to test for HIV as a norm. I agreed to it but as it was a new proceedure they forgot but will probably be tested next time. I was shocked when they told me I didnt have syphillis (not because I thought I had it) because I didnt know they tested for that.

I think that until recently (last year) all pregnant women in the UK were tested for HIV anonymously to gather information on infection rates etc.

However, research has shown that HIV transmission from mother to child is greatly increased by breastfeeding. When this came to light it was decided that anonymous testing would be unethical.

Now all pregnant women should be offered an HIV test at their booking in appointment (I was Dec 2001). This is so HIV positive mothers-to-be can be advised that breastfeeding increases the risk of their baby becoming infected.

I don't know anything about the insurance side of things.

Ok, here goes - I have quite a lot to say on this topic, speaking firstly as a doctor working in HIV and secondly as a recent mum. The department of health recomended in 1999 that all pregnant women should be screened for HIV. The reasons for this are simple. The incidence of heterosexually acquired HIV in the UK is on the increase and there is a substantial risk of passing HIV to the baby without intervention. The risk varies depending on circumstances but is of the order of 15 - 20% and may be increased to more than 30% by breastfeeding. Treatment for HIV has improved enormously in the last few years; survival rates and risk of illness are dramatically reduced by treatment. Intervention in pregnancy can reduce the chances of an infected baby less than 5%. In addition, treatment of the mother is obviously also beneficial.

The guidelines now are that all women are screened at antenatal booking. Research has shown that an "opt out" system works better than an "opt in" system, ie that the HIV test is part of the batch of tests and that, only if the woman refuses, is it not done. Syphilis has been part of the antenatal screening tests for ages so everyone is tested for this too. Again, it can affect the foetus but is treatable if diagnosed early enough. Although syphilis has been unusual recently, it too is on the increase again and there have been a number of heterosexual outbreaks in the UK in the last few years.

Regarding insurance etc, the insurance companies decided a few years ago that a negative HIV test will not affect your chances of getting covered. This is in recognition of the fact that many more people are now being tested for lots of reasons. Your premiums are only increased if you are deemed to be in a "high risk" category.

So, there seem to me to be good reasons for HIV testing in pregnancy, even if you think your risk is low. Unexpected positive results are thankfully rare but I would argue that it is much better to know as early as possible. A lot of people feel upset or offended by the suggestion that they should have an HIV test. It is becoming a more routine part of medical care in all settings as HIV becomes more common and hopefully some of the stigma may abate. However, I do think it should have been mentioned to you, Motherofone. I'm surprised that the nurse said it wasn't routine as I expect you would have been offered a test at a hospital. You are correct that medical records held by the GP can be disclosed to employers, insurers etc, but only with your consent. It may be worth discussing it with the GP again before you have the tests, I'm not sure how they are going to help detirmine the cause of your pneumonia.

If you are concerned about confidentality and want to be HIV tested I would recommend going to a Genito Urinary Medicine clinic. Even if this is in the same hospital, it is comletely separate and your notes and results will never leave there without your permission. GU clinics are legally seperate from the rest of the health system - you can give a different name and your GP won't be informed that you have attended. The tests are free, you can arrange for a result the same day in some places and you will recieve informed advice about the tests.

My final comment is about conselling for the test. It is no longer the case that everyone undergoing HIV testing has formal pre-test counselling but this should be available if required. When I had my antenatal booking bloods, the midwife was also very flustered about it. She hadn't asked me what I did for a living, nor had she asked any questions about risk factors. She went on to say that I probably didn't need it because I was "normal" but that she had to offer it anyway. I wasn't very impressed by this, she had simply looked at me and assumed that I was low risk. This may not have been her fault but probably reflects lack of information and training.

I'll shut up now but this is a subject close to my heart. I hope that this makes some sense and is helpful. My advice is to go for it but to ask for more explanation if you are unsure.

well Smew ought to know but what I found was a recommendation from Dept of Health that it should be offered to women in areas with a higher incidence of HIV - London, Dundee and Edinburgh were mentioned. They also said you should have counselling first, referred to the risk of tranmission to the baby and quoted statistics about how few pregnant women with HIV knew they had it. They didn't say how many knew they were at high risk.

What insurance companies say now and what they may say in a few years could be different. Personally I wouldn't have a test if it was offered but I'm as confident as I can be that I'm very low risk. Also I'm a blood donor so I'd have to have acquired it very recently. The GUM clinic sounds a safer bet if you're at all concerned.

I was asked if I wanted a HIV test, which after some discussion with dh who works in diagnostic virology, I refused, on the basis of low risk. Imagine my horror when the results of all my other tests came back along with a negative HIV test. Even though I live in a high risk area, I am horrified that they would ignore my request. I still haven't decided what to do about this. Do I have grounds for a complaint?

For goodness sake, we're intelligent women, so what on earth is the fuss about. HIV is a disease, not a morality statement. You would hope that by now people would stop being so prejudiced about it. Its not an insult to be asked to be tested, its common sense. How many of us can truly put hand on heart and say we could not have possibly caught the disease? Congratulations to those that can, but I'm not ashamed to say that I have never always been 100% careful, and am pleased the NHS is providing a FREE and useful service to mother and baby.

And Slug, you want grounds for complaint? hasn't the NHS got enough on its plate!

Lil, my point exactly is that I am intelligent and informed. I expresly stated that I did not want the test but they went ahead and did it anyway. It was just one of the more blatant examples of the way I felt patronised and undermined by the medical profession while I was pregnant.

but Slug, my point is, really does it matter? I mean - there's a syphillis test and a few other obscure ones that are included in the 'pack' that you never queried, why not, you most certainly haven't got them? it is easier for the NHS system if people just say yes to the whole lot, rather than having to sort thru' and mix and match just because women have a problem with acknowledging the disease HIV. And Slug, if you say you haven't a problem with it, why did you single it out? It doesn't cost you a penny or cause you any more hassle to let them test. As you said, you consider yourself low-risk - but you didn't say no-risk. We're supposed to be doing this for our baby's sake anyway!

BTW I filled in a new insurance policy recently, and on the question of having had a HIV test, I said 'yes, as part of my pregnancy screening' - and my monthly rate didn't go up in the slightest, they actually made more fuss about a kidney stone I had when I was 21!!!

Well I understood we all had it done routinely and that like SmeW said it is better to do an opt out rather than opt in. I find it really strange that the nurse was the one with the problem. To me that is what is wrong here, not the testing. I was tested routinely and there was no embarrassment about it whcih seems to be the case in some peoples experience.

I can also see your point Slug, that after opting out, you still were tested, but surely life's too short to complain. Out of interest why did you opt out?

Slug - I'm with you 100% on your comments. This issue has nothing to do with whether it's an intelligent thing to be tested/whether its in the best interests for the unborn child/ whether we should applaud the NHS for providing it etc, etc -I actually accept all those things. However, the issues I had when I started this thread were:

1. I was not briefed by my doctor that this test would be done (and found out only because of the nurse's comments) and therefore was not presented with the option to 'opt out'
2. I was (potentially) not given time to 'consider' the implications of the test and make an informed decision (as it happens, this became the case, as I didn't end up giving a blood sample)

I'm surprised that some people seem so happy to blithely accept whatever the medical profession recommends as standard. A lot of the stuff written in recent NHS charters etc is at pains to point out that just because people are patients, it doesn't mean that they cease to be individuals with the right to make choices over issues which could significantly affect them.

Perhaps I'm just more cautious about the healthcare industry (I work in a role closely involved with health & patient information services) but as a patient I want to be a partner in the decision-making process about actions which could affect my health and future.

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I appreciate what you are all saying about the importance of being treated as a person with views, and not just a patient. But if I were in the medical profession I think I would get very frustrated at people who opted out of the test. It doesn't make sense to opt out, and can be detrimental to the child. I think we've established that the test makes no difference to our insurance policies (and if it did, then take up the fight with them not the NHS).

Maybe the solution is not to treat HIV as different form any other disease and remove the 'opt out'. I can't see a valid reason to have it in (except to encourage ignorant stigma!)

O.K. point taken, BUT... I was aware of my HIV status. I had not indulged in any risky behaviour since the last test was taken, therefore it was unnecessary and a needless expense on the NHS. I also refused the test for sickle cell trait on the basis that a) I don't have the genetic makeup that makes it likely and b) as I was not intending to terminate the pregnancy, I would cope with the outcome if she did have the trait. Why bother to have the opt in opton if you are going to ignore the patient's request? Overall I had some pretty horific experiences of the medical profession ignoring me while I was pregnant. I ended up being unnecessarily hospitalised twice. I am angry with the way I was treated, patronised and ignored throughout my pregnancy, the bloody midwives always talked to me in baby talk. The only time I got a straight answer from any of the medical profession was when I had dh, who works in a rather famous children's hospital, with me. I have a friend who is a GP who says medics hate people like myself and who are informed and articulate.

Slug, I am so sorry to read from this thread and others that you had such a grim time with the Sluglet.
I seem to recall you are an SE Londoner. If you ever do feel you want another baby, I would definitely recommend Queen Elizabeth over where I think you may have been. I did not have an easy time post C-section either, but the stress and distress were much alleviated by the staff at Greenwich, who were simply fab. I think one does have a right to choose one's hospital for delivery, and that is where I would go. The other big hospital in the area has a very chequered reputation for midwifery services. Ironic considering it's the local teaching hospital and Queen Elizabeth is just a low-status general!

Slug - When you got your results did you question why the HIV test was done. It was probably an oversight (ie. the lab technician whose job involves receiving umpteen samples per day all requesting the same batch of tests failed to see that, in your case, the HIV box was not ticked), rather than medics deciding that they knew better.

By all means point out your concern to the hospital involved, after all this is the only way the system can be changed to prevent this from happening again.

My ante-natal clinic use a two form system ie. all the usual blood tests are requested on one form and the HIV test (which the patient is asked whether they want or not) is a seperate form.

I work in a hospital lab. so can see how these sort of situations can occur through a bad system rather than malice or arrogance of medical staff.

BTW I had ante-natal blood taken for AFP level only (for a neural tube defect screen) but requested that other biochemical markers of Down syndrome should not be measured and did not want a DS risk but they accidentally did it anyway. I was greeted by a midwife who was shaking as she told me that my (unrequested) DS risk was high. Luckily I felt informed enough to ignore the risk (felt very sorry for midwife who had obviously drawn the short straw in having to tell me) and had a lovely healthy baby. I did point out that their system should be reviewed and I'm confident that it has been.

Oh, and I'm not trying to excuse anyone who ignored/patronised you during your pregnancy - I had plenty of that too. I just thought I might be able to explain how the unrequested HIV test may have been done.

Lil - I don't think the problem with the HIV test is to do with stigma or even insurance questionnaires. For me, it would be dealing with the repercussions of a positive result. I can see all the intellectual arguments for why it is better for me, my child and any future partners to know my HIV status but, frankly, I'd be scared shitless if I found out I had a possible terminal condition that would also restrict my sex life. I've put off giving blood for this very reason and I KNOW I'M WRONG in thinking like that.

But surely the WHOLE point of HIV tests for pregnant women are that if it is positive, steps can be taken to save the child's health. Isn't that all that matters?