"GP referred me for an HIV Test with no prior discussion, complaining was a total headache"

I was called in to my surgery recently for blood tests. When I asked the nurse what tests she was going to do she told me one was for HIV. I was shocked, the doctor hadn't mentioned she wanted me to have an HIV test, or ever suggested that one might be necessary. There's nothing in my lifestyle or symptoms that would make me think HIV could be relevant to me. I actually thought you were supposed to get counselling before being tested for HIV. I declined the test. I had no reason to think it was needed and I wanted the doctor to explain why she had referred me for it.

When I saw the doctor she said that I didn't need the test but that she had referred me for it because she was under the impression I was worried about a previous test result which had shown I had slightly low white blood cell count and she had decided that the only test she could order would be for HIV as that's "the only possible viral cause of a low white blood cell count" - unless the result was fine when I had my white blood cells looked at again in a few weeks. She said the preferred course of action would simply be to re-do the original test in a few weeks and she would expect the white blood cell count would likely have returned to normal by then. We agreed then not to proceed with the HIV test, clearly it was not needed.

She had got the impression I was worried about the previous white blood cell test because she had had several messages that I had called the surgery. The reason she'd had several messages was because I had been told I was anemic, at the hospital, and they had told me to follow up with my doctor to get iron tablets and also to get her to keep an eye on my white blood cell count which had also been a little low when I was tested there. I had called about this but not got any response until 7 days after my first call, so I had assumed she hadn't got my messages and kept calling back. She meanwhile had written me a prescription for iron tablets after my first call, but I never knew about this till 7 days later, as no-one told me. So she assumed I was really worried because she had 7 days worth of messages - and thought it was reasonable to assume implied consent for an HIV test from the fact I was seemingly calling repeatedly asking for advice regarding the previous tests despite the fact she’d already done an iron prescription (which came with no accompanying info btw).

I was pretty cross. I don't think it's reasonable to be referred for an HIV test without any discussion about it in advance, particularly when the briefest of discussions confirmed that the test was not appropriate. I checked the NICE Guidelines on HIV testing and understand I should have been given the opportunity to give my informed consent and as the doctor has confirmed the test wasn't necessary the whole thing and all the stress surrounding it has been a complete waste of time.

The doctor got very agitated when I voiced my concerns. She insisted I put everything in writing. As the HIV test was only part of my problem. I also had to explain about the mix up with the messages and in the end decided it was also appropriate to mention the fact that she has often been quite difficult to talk to, including on that day when she became agitated and kept interrupting me, not letting me finish my sentences.

So to put everything clearly in writing I had to write a 5 page letter, which was time consuming and difficult to do. In response I got a 5 page letter back which for the most part was apologetic (about the communications mix ups) but insisted that it was reasonable for me to be referred for the HIV test with no prior discussion. The letter also, to my surprise and dismay, stated that the relationship between us had now “broken down. ” I had not thought this was the case and had only written because the doctor told me she wanted me to. I had thought we could have a discussion and resolve things and move forward with improved mutual understanding. I also expected that when she reflected on having sent me for an HIV test without first discussing it she would realise it wasn’t really on and that this would be acknowledged as a poor decision. Everyone makes mistakes.

The practice insisted on going through a formal mediation process which meant I was not able to discuss my concerns with my doctor until two and half months after my first letter. During this time I was intermittently quite stressed about the whole situation as you might imagine. It’s important to me to have a good relationship with my doctor. I have a chronic health condition and I felt unable to consult my doctor during this time as they had told me the relationship had broken down. They did send a message via the mediator that I would still be treated like anyone else at the practice but I felt very uncomfortable about the whole thing and I avoided going to the practice with a blocked ear which troubled me for four weeks during that time. (Fortunately it unblocked itself in the end)

During the mediation meeting the doctor had to be asked (by me) to come out from behind her computer screen (which she kept looking at when the meeting started) and we were told we could only have 40 minutes although the mediator had previously been told we would have an hour. It was not long enough to discuss everything properly.

Firstly I was told that my issue was with the doctor’s personality – that sometimes two people have a personality clash and just can’t get along. I don’t accept that. I don’t think my issues with the doctor being difficult to communicate with are anything to do with her personality and I think it’s a total cop out to say that they are. I think it’s down to behaviour and attitude and I have concerns that her behaviour towards me as a patient has been highly insensitive and simply not professional.

She insisted that it is not practical to get informed consent for blood tests and that an HIV test is no different to any other test nowadays. I just don’t think this is good enough.

I spoke to someone at NHS England who confirmed they felt she had acted inappropriately and also advised me that I should get the reference to the test removed from my medical record. The Terence Higgins Trust described her behaviour as not only insensitive but unethical and cavalier. The guy at NHS England said he would concur with that. The practice have refused to amend my medical record.

So I have decided to switch doctors. That’s all very well for me and really I just need to move on, but I am concerned this doctor will be treating other patients in the same way and not all will be able to advocate for themselves as I have done. Finding out how to flag this issue up to anyone more senior than my doctor within the NHS has been a total nightmare.

My first call to NHS England (referenced above), they told me all I could do was send a complaint to the Parliamentary and Health Service Ombudsman but it didn’t sound like this was likely to do much good and it also sounded like it would be a total headache. I spoke to the Ombudsman, they sent me a load of forms and made it sound like it would be a tortuous and pointless exercise.

I was then advised by someone else to speak specifically to the complaints team at my local Customer Service Unit for Kent (part of NHS England). The guy there advised me that if I’d cc’d my original feedback to NHS England it would have been shared with the NHS Englad GP Appraisal Team who are responsible for monitoring GP Performance. However, having first contacted the surgery directly (as they advised me to do) this option is no longer available to me! I was eventually given an address to write to the Medical Director at Kent and Medway Medical Directorate, who has ultimate responsibility for GP Performance management. At least that way if there are other similar complaints the performance issue can be addressed at my GPs performance appraisal. I won’t get any more feedback but it seems this is the most I can do without going down the Ombudsman route. I am also considering letting the GMC know about it and I’m writing on here, on the offchance it may do some good.

On so many levels I am really pissed off. At my doctor and at the new NHS structure which makes it so incredibly difficult for patients to raise issues, or give feedback, or to have those issues addressed if they don’t agree with the position their doctor takes.

The idea that the new structure puts patients’ voices at the heart of the service is an absolute fallacy. I hope steps can be taken soon to make it less convoluted for issues to be addressed and escalated for discussion within a performance management framework when the occasion arises.

I think my doctor simply needs someone she respects, (clearly it won’t be a patient) to work with her on improving her behaviour and level of sensitivity. I hope this can happen. I don’t want others to have the same experience I’ve had.

Here’s hoping my new GP will be better.