Frequently asked questions: HIV tests, results and confidentiality
What is HIV self testing?
HIV self-testing is a new way to test for HIV. In the past, people could only be tested for HIV at a clinical service. Self-testing allows people to test in a range of settings including their own home.
HIV self-testing is when a person tests themselves for HIV using a kit designed for personal use. They give a small drop of blood, and then do the simple test. They then read their own result. Any HIV self-tests with a positive result must be confirmed by a health care professional.
Is a self-test the right choice for me?
HIV self-testing is not suitable for everyone. You may want to talk to someone before performing your HIV test and also consider what you are going to do when you get your result - whether positive or negative.
Have I taken a risk?
Any of the following are considered high risk HIV behaviours:
- A condom has broken during vaginal or anal sex
- Unprotected anal sex
- Unprotected vaginal sex
- Oral sex (mouth to penis) with someone who may have untreated HIV, IF you have mouth sores or inflammation
- Sharing needles, syringes or materials for injecting drug use if someone has untreated HIV
What if my test is positive?
- If you do test positive, there is a very small chance it might be a false positive, a test error. (Tests are 99.7% accurate.)
- If you get a positive result you should arrange to visit a clinic or GP to get your result confirmed.
- To find a clinic near you click here: www.sxt.org.uk/hiv. All positive results need to be confirmed by a laboratory test. In some areas there may be specialist services for sex workers to support you. Please contact the Project Coordinator for details.
- You can contact the Project Coordinator for support on what to do next or if you are worried about your result.
- It can be a shock to get a positive result, so you will need support. The earlier you find out, the better this is for your health. Everyone in the UK has free access to treatment for HIV, even if they are not a resident. This is regardless of immigration status.
- HIV treatment is very effective and life expectancy is now close to life expectancy for those who are HIV negative. For treatment clinics near you click here: www.sxt.org.uk/hiv
- If you want to speak to someone about your HIV care Terence Higgins Trust Direct runs a hotline which you can call from 10 am – 8 pm Monday to Friday. The number is 0808 802 1221 or you can visit the THT Direct webpage.
- If you need support outside of these times you can call the NHS urgent and emergency care line by dialling 111 on your phone. This service is open 24 hours a day, 7 days a week.
What data are we collecting and why?
We are collecting data at different stages to evaluate the FLASH project. All data will be confidential.This means that no identifiable information will be shared with anyone outside of the research team. We intend to collect most of the data anonymously. We are collecting the following data:
When ordering your test kit you will be asked for:
- A few questions (y/n) to find out if you are eligible to order a kit. This will be used to find out how many people were eligible to order from those visiting this part of the website. This data will not make you identifiable.
- Details of 1) previous HIV testing, 2) age group, 3) if you are from the UK and 4) region of the country you live. This provides anonymous summary data (This information will not be identifiable and will not be linked to your name or postal address information) for people ordering HIV self-test kits.
- A name and address are collected, separately from the above information, only for sending the kit. Then deleted 7 days after despatch.
- We ask which language you would like the pack information in. This is to make sure you have the information you need if English is not your first language. We will only keep a summary of the number of non UK packs ordered. The exact language will be destroyed 7 days after despatch.
The above data is emailed, from the website, to the Project Coordinator and kept on a secure database at Brighton Oasis Project. None of your data will be stored on the website.
If you take part in the feedback survey you will be asked for:
- An optional mobile number or email address to receive a reminder link to do the survey. This will be destroyed after the reminder text or email has been sent.
- All survey data is anonymous. Identification will be by a unique number. Survey data is kept on a secure database at Brighton Oasis Project.
- The summary survey data will be kept for 5 years in case an independent research body needs to check the quality of the data. This data will be anonymous. We will not hold personally identifiable information.
If you take part in the interview:
- You can apply to take part by leaving a phone number or email address to be contacted.
- If you agree to take part these details will be deleted after the interview has taken place.
- The interview can be arranged via Skype audio or mobile phone to protect anonymity.
- No identifying details need to be disclosed in the interview.
- The interview will be tape-recorded and the content written up in a Word document. The only way to identify this information will be by a unique study number.
- Once all the people have been interviewed, the data will be analysed. The data will be kept for 5 years in case an independent researcher needs to check the quality of the research. None of it will be personally identifiable.
Is my data confidential?
All data that is collected during the FLASH project will be confidential to the research team. This will not be shared with any outside agencies for any other reason than for evaluating the FLASH project. Any data used for evaluation will not be personally identifiable.
The name and address you give to receive the kit will be destroyed 7 days after sending. These details are received separately from the other data that you provide. This ensures guarantees anonymity and confidentiality.
Is the packaging discreet?
Everything is packaged and delivered in discreet, plain, grey polythene packaging. There is no way to know what is in the package or who has sent it.
How do I use the test?
Click here to watch the video and/or follow clear instructions to take the test.
How do I know if my result is correct?
Your test result will only be greater than 99.7% accurate after 3 months following exposure to HIV. This is because your body may not have produced enough antibodies for the test to detect. Within the 3 months following your possible exposure, your negative test result may not be accurate. If you have any doubts about your result or have any symptoms you should visit your local healthcare professional (www.sxt.org.uk/hiv). If you are not sure of the exact timing of the risk incident, you should test again after 3 months.
Are there specialist sexual health services for trans women?
CliniQ is a holistic sexual health and well-being service for all trans people, partners and friends, based in London
Clinic T is a Brighton based sexual health service for anyone who identifies as trans, non-binary or gender variant (partners welcome too)
Terrence Higgins Trust has useful information on sexual health for trans women
Action for Trans Health seeks to improve trans people’s access to healthcare
Trans Survivors Switchboard is a dedicated helpline which offers support to trans people, including those who are non-binary or questioning, who have experienced sexual violence at any point in their lifetime.
If I have been raped, where can I get support and advice?
If you have been raped, or sexually assaulted, you can access non-judgemental support at Rape Crisis centres across the UK here.
They are anonymous and confidential. They can offer you advice and emotional support.
The trans survivors switchboard is a dedicated helpline that offers support to trans people who have experienced sexual violence.
You may report the incident to National Ugly Mugs. Who offer a reporting and alerting service for people who work in the sex industry.
Does it matter which finger I get the blood from?
No, the blood will be the same from whichever finger you get it from.
How will I know if my test has run correctly?
The HIV test devices have an inbuilt sample control line to ensure that the test has been performed and run correctly. If the control line does not appear your test has not worked. Please throw your test away as described below and order a new kit by contacting the Project Coordinator.
I can’t see my results.
Make sure the blue wording is facing towards you when you place the test device into the cut out shape in the box.
I can’t find the buffer bottle.
It is in the end of the device. You need to pull it out of the end and place in the round hole in the box.
The lancet won’t click.
You may have already clicked the lancet by mistake, it will only work once. If you have any difficulties of it not working, contact the FLASH Project Coordinator (details at bottom of page).
My test hasn’t started to run.
Make sure the device tip is fully pushed into the buffer bottle right the way to the bottom. The test can only run when the tip is fully inserted. Push the device down firmly until it will go no further.
Will using the lancet hurt?
Not really, it is best to use your middle or ring finger and the sides of the tip of your finger as there are less nerve endings there.
What happens if my test falls over while running?
Stand it up as soon as possible. Your test should still work if it has only not been standing up for a short time. You will know if your test has worked by the appearance of the control line after 15 minutes.
The bottle won’t fit into the hole.
It needs to be foil side up to fit in the hole.
How do I dispose of my test?
A sealable, opaque polythene bag is included with your test. Place all the components back into the box; place this into the bag and seal. You can then throw the bag away discreetly with your usual rubbish.
Did anyone help preparing this information?
Yes we’d like to acknowledge BioSure UK Ltd and to SELPHI and its Community Action Group (CAG) for their information on self-testing. The SELPHI CAG facilitated full participants and public involvement (PPI) input so that SELPHI material is easy to read and visually understandable.