Support for everyone

Your HIV clinic should be an important source of adherence support. Neither your doctor nor any other HIV service provider should assume that you are going to adhere poorly simply because of who you are. As mentioned earlier, many people with HIV have problems with adhering at some time, and people who have good adherence at one time may have poorer adherence at another. You should not have HIV treatments withheld simply on the basis of an assumption about how your personal circumstances might impact on your ability to adhere. Adherence support should be made available to all patients, as anybody is capable of both high and low levels of adherence.

You should feel able to tell your doctor if you are having problems with adherence. As mentioned before, adherence to anti-HIV treatment can be difficult and your doctor should be prepared to discuss any problems you are having and to work with you to find a solution. The sooner you seek help if you are having adherence problems the better, and if you feel unable to discuss your concerns with your doctor, then try speaking to a nurse or other member of your health care team. HIV advocacy organisations like the UKC (UK Coalition of people with HIV and AIDS, telephone number 020 7564 2180, www.ukcoaltion.org) may also be able to help.

Ask your doctor or other member of your health care team if your clinic has an adherence support policy which outlines the support available to you. Recommended guidelines on the kind of adherence support UK HIV clinics should offer can be read on the website of the professional organisation of the UK’s HIV doctors, www.bhiva.org.

Support when starting or changing therapy

If you understand why you are taking anti-HIV therapy and why adherence is important to prevent treatment failure and the emergence of resistance, then you are more likely to have high levels of adherence. When you first begin taking anti-HIV treatment, being given written information about your treatments to take home and read later helps you to remember what your doctor told you about how and when to take your combination. HIV support organisations may also be able to provide you with information on your medication and how to take it.

Some side-effects are a particular problem when starting new treatment but go away, for most people, after a short period. These side-effects may include stomach upsets, feeling sick or being sick, bad dreams, or feeling ‘spaced out.’ It can help to know in advance if your treatment is likely to cause side-effects which interfere with your daily life, looking after children, or work and to make plans to help you cope.

When you start or change therapy you should understand:

• Why you have been given this medication.
• How often you have to take it.
• How much you should take.
• If there are any dietary restrictions.
• If there are any side-effects which might occur and how you might be able to manage them (and when you need to seek advice urgently).
• Where you can get help and advice (during normal clinic hours and in the evenings and at weekends).

Because taking anti-HIV treatment is a life-long commitment, you may find that you need adherence support on an ongoing basis or at frequent intervals. You should feel able to discuss adherence with your health care team at any time.

Other health care professionals

Many HIV clinics now have nurse specialists and pharmacists who coordinate special adherence support services.

• Mental health specialists such as psychiatrists, psychologists, mental health nurses and counsellors can provide treatment and support if you feel that the state of your mental health means that you have problems adhering.
• Some clinics have nurse specialists who can spend time to discuss adherence with you. This might include how to manage side-effects, or fitting medication in with your lifestyle.
• Pharmacists can sometimes discuss how you should be taking your medication and possible interactions with other drugs and treatments.
• Dietitians can help you make sure that you are eating the right amount of food so that your medication is properly absorbed. They can also give you advice about how to minimise side-effects such as nausea and diarrhoea.
• Social workers can help you with practical issues including housing and money.