Blood results
Your doctor or nurse will usually be able to tell you how your blood is doing from test results from your last appointment. They will talk about your CD4 count and viral load. These tell you how your immune system is working. To be as healthy as possible you are aiming to have a high CD4 number and a low viral load number.
Speaking up
Don’t be afraid to ask questions. It’s really important to let the nurse or doctor know if you didn’t understand something so they can explain it further. Remember, this is your appointment for your health. You should leave feeling like you understand everything that’s happening to you and you’ve been able to raise any concerns you have about your health and wellbeing.
Your doctor or nurse
As part of their job, nurses and doctors must keep health information confidential, meaning they are not allowed to tell anyone else about it. You can talk to them truthfully about your medication or anything else, and they will keep the information private.
Let them know if you forget to take your medication or have decided to stop taking it. It’s good to be truthful about this so doctors can understand your blood tests better and support you as effectively as possible.
Listen to our podcast, where young people living with HIV talk about their healthcare and call on doctors to ask about their mental health during appointments.
You might want to know more about growing up, puberty, sexual health and sex, as HIV can be passed on by having sex. You may have questions you want to ask so you can understand HIV better.
You can even open up about problems at home, at school, or with friends. They can be helpful people to talk to about anything you may find hard to bring up with family or friends.
If you want some time alone to talk about more personal things, let the nurse know when you have a moment alone with them. You don’t need to be embarrassed. This is their job and they are used to talking about all sorts of things with children and young people.
Healthcare professionals must not share information about your health unless you give them permission to. You can also check your health record at any time. Find out more about how your HIV information is held by healthcare staff and your rights.
Moving to an adult clinic
Healthcare workers use the term ‘transitioning to adult care’ to describe the process of planning and then moving a young person from children’s to adults’ HIV healthcare services. Moving away from your children’s health team can feel scary. You may have known them for many years. However, this can also be an exciting stage of your life as you take a positive step into adulthood and gain greater independence.
Transition is a gradual process, giving you and everyone involved in your care time to prepare. Throughout this time, your team will be there to support you, helping you feel happier and more confident about the move.
Transition is about making plans together with you, not just about you.
What transition may look like for you:
Age 12+
Your clinic team will introduce topics aimed at building your health knowledge and start to talk about transition. You will also start to see your doctor or nurse on your own for part of your appointment. This happens in most children’s clinics. Your clinic team will use this time to discuss topics that you may not feel comfortable talking about in front of your parents or carers.
Age 13-16
Your clinic team will discuss transition with you in more detail, including the options available for the adult service of your choice, depending on where you live. You will continue to build on your health knowledge as well as talking about your emotional wellbeing. Becoming more independent is an important part of this stage.
Age 16-18
You should now be ready to be welcomed into the young adult or adult service of your choice. You may already be part of an adolescent or transition clinic and will have met the adult team. If not, you can ask your children’s team to arrange a visit to the adult clinic to see what it’s like and meet the new team before your move.
Read one young person’s experience of transition to adult care
“My doctor first mentioned moving at age 17. Before that I had no idea that I would ever be moving.”
All About Me
Use this document in your appointments with your doctor or nurse to help track your journey with your HIV and transitioning to adult care.
Further tools for clinic appointments
- Use the checklist for clinics in your appointments to help guide your conversations.
- This guide suggests three questions to ask to help patients get more involved in their own healthcare decisions and treatment options.
