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?


10 thoughts on “Standards of Care: What Really Matters to People with HIV? (part 1)

  1. Thanks for this blog Silvia. To me there are a few key issues:
    a) what guidelines and accountability mechanisms will there be in place to ensure that all those tested are done so on a voluntary basis, in total confidentiality and with pre- and post-test counselling?
    b) what training will health staff undergo to ensure that they adequately understand their roles and responsibilities with regard to the above?
    c) there are at least two key documents which may be of use in this regard – I am sure others can provide many more! :
    i) A WHO Bulletin article by Sofia Gruskin and Laura Ferguson on the use of human rights indicators in public health with an eg in relation to HIV: http://www.who.int/bulletin/volumes/87/9/08-058321/en/index.html
    ii) A WHO publication which highlights how gender can be integrated into HIV programmes in the health sector. This highlights the quality of care model, which again refers to the issues highlighted above.
    Looking forward to hearing others’ views!
    All the best

  2. Thank you Alice this is really useful, I will make sure BHIVA is aware of those issues and documents.

  3. Hi Silvia..

    There are hugely important issues here . For us to move forward with this in A&E and hospital wards on a large scale way, we really need to know that there are proper, supportive, forward referral pathways for people getting a new diagnosis. And that the staff who are testing are aware of them – and the importance of them. No testing without the flow through to treatment and support!

    Brian West

  4. Pingback: Analysis: Why some people do not receive continuous HIV medical care « From Eternity To Here

  5. As you’ve highlighted I think it is vital that the professionals offering testing are properly trained. Your example of the GP’s delivery of the results of a positive test is a case in point, Silvia. At a meeting I attended when ante-natal testing was introduced in Wales midwives wriongly assumed that GUMs would do the testing. This appeared to be partly due to lack of time but also due to their inexperience.

  6. Thank you Sue and Brian you highlight very important issues around staff training and communication. I wonder what indicators we could use to moinitor what is happening. How can we monitor it? How can we hold healthcare providers accountable?

  7. HI Sylvia,

    Sorry, I have come to this debate very late but I wanted to reinvigorate the discussion in light of home testing kits that are now available in the United States and I believe will shortly available here in the UK.

    Paul Decle.

  8. Thank you Paul , I agree we definitely need to raise the issue of home testing when the document is out for consultation.

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