Las week I went to a meetings that really left me thinking. It was about drafting the BHIVA ‘Standards of Care’ guidelines for clinical care of people with HIV. This is a really important process because it will influence the kind of services and care that will be available for us in a time when resources are scarces and the NHS is being revolutionised.
I was asked to do a presentation on what matters for people living with HIV and I would like to share it with you a point at the time. I would also like to hear from my HIV positive readers what good quality care means to you, and how can it be measured, so that those who deliver it to us can be held accountable.
My first point was testing.
Expanded testing is a big priority for the NHS: it is seen as crucial in reducing people being diagnosed too late, when they are very sick. It also has a place to play in reducing HIV transmission: people are more likely to practice safer sex or being on treatment that reduces infectiousness when they know they are HIV positive. However, in spite of all those good aspects, the idea of blanket testing sends shivers down my spine. Expanded testing should always mean humane testing. I believe that it needs to be provided by fully trained staff who understand the implications of receiving a positive test and the possible negative consequences: for example for women testing positive and disclosing their status can make them vulnerable to Gender Based Violence. We also need to ensure that people, when testing, do not experience a great trauma that may alienate them from accessing health services. I recently supported somebody who a couple of years ago was tested by the GP and was told he had AIDS without further explanations. This person fell apart, lost his job, his home, his partner left him and (not surprisingly) didn’t go back to the doctor for over a year.
I am especially concerned about plans of offering testing in A&E and hospital wards. Yes, pilot projects have shown this to be acceptable to health staff and patients alike, but this is probably when the test is negative, it is a totally different story when it is positive! Also the last generation tests are super-fast and develop just in front of your eyes, in a couple of minutes, almost like a pregnancy test. I am concerned this process may be really stressful and traumatic for both the health care provider offering the test and the person who receives it.
What are the solutions?
I think we need to keep an eye and have indicators on how long it takes for people to access services after testing, and that they continue going to hospital (especially in the first year) and don’t drop out: this could be a sign of trauma and poor testing.
I think that healthcare providers should be trained around the links between HIV and vulnerability to Gender Based Violence so that they can become able to spot signs of the risks and ways of supporting women.
Also we could ask newly diagnosed people about their experience of being tested and accessing treatment care and support.
Any other ideas on how to ensure high quality testing?