1. BUILDING THE BEST RELATIONSHIP WITH YOUR CLINIC/HEALTH CARE PROVIDERS 1

2. The healthcare team 2

3. How important is a good relationship with your health care team? Think of it like buying a pair of shoes for a long journey! Response to ART depends on:  access to HIV testing and ART [1]  your adherence to ART [1]  how you use your clinic [1] Your relationship with your clinic affects how likely you are to take up an offer to start ART [2,3] 3 [1] Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009 [2] Misener et al, West J Nurs Res1998;20:431-447 [3] Maisels et al, AIDS Patient Care STDS 2001;15(4):185-191

4. How do I build the best relationship? A positive experience and good outcomes in clinic may be affected by the relationship you have with your health care workers Information is the key to this exchange:  Information that you provide  Information that the health care worker provides If you feel comfortable with your health care provider you are more likely to describe your situation better 4 Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009

5. A good health care worker will… Listen, provide you a range of opinions and explain things to you Receiving advice, reassurance, information and support from your health care worker in a non- judgmental way can have a significant impact on your quality of life, satisfaction of health care and increase ART adherence [1] 5 [1] Ong L et al. Soc Sci Med 1995;40(7):903-918

6. Let’s think about different consultation styles “What do you reckon, doc?” 6

7. If you are in the driving seat… “You’re paid to do what I tell you!” 7

8. If doctor knows best… “How many times do I have to tell you to lose weight?” 8

9. If doctor knows best… Historically, in many societies, the doctor takes on the role of the ‘parent’ You are likely to assume a more submissive role The doctor is the ‘expert’ and you are ‘expected to co-operate’ The encounter is controlled as an interview to reach a diagnosis 9 Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009

10. In a person-centred consultation You are encouraged to air your own feelings and concerns, enabling active participation in decision making [1] The health care worker uses open-ended questions to encourage discussion [2] You are able to access a number of experts [2] You can challenge your clinic if it becomes an issue that you see a different doctor every visit [2] You and the health care worker recognise that HIV is more than just an illness; it impacts on family, friends, work, sexual and social life [2] [1] Little P et al. BMJ 2001;323:908–911 [2] Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009 10

11. Shifting the balance of power HIV changed the way that doctors and people living with a chronic illness interacted [1] 1983 Denver Principles – empowered the person living with disease [2] Activist-doctors Activist people with chronic disease [1] Better informed people do better, visit the doctor less and make health care more cost-effective [3] 11 [1] Expert Opinion of author Brian West as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009 [2] Denver Principles Project. See http://www.actupny.org/documents/Denver.html Accessed May 2014http://www.actupny.org/documents/Denver.html [3] Bodenheimer T et al. JAMA 2002;288(15):1909-1914

12. Partnership is the key Help your health care workers to give you the best service Clinics are busy, doctors are human beings too 12

13. What affects our ability to influence a medical consultation? Our sex/gender [1] Our social and educational achievement level [2] Whether we belong to an ethnic minority [3] If we do not share a native language [3] Our sexual orientation/identity (LGBT) [4] If we simply don’t know the questions to ask… 13 [1] Shiels C et al. Fam Pract2006;23(2):246-252 [2] Baker D W et al. Am J Public Health 1997;87(6):1027-1030 [3] Ferguson W J et al. Fam Med 2002;34(5):353-361 [4] Feldman, M D & Christensen J F (1998)Lesbian, Gay, Bisexual and Transgender (LGBT) Patients in Behavioural Medicine in Primary Care: A Practical Guide pp. 122

14. What can I do to make the most of my appointment? Be prepared!  Get advice from a community treatment information provider  Don’t miss your hospital appointments  Make a list of top 3 questions  Ask for your blood results in advance  Make notes during your consultation  Speak to the nurse/pharmacist if you are uncertain about anything  Doctors work under huge pressure, do your bit to be organised  Ask the clinic for tips on how best to be prepared 14 Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009

15. What if I don’t have a good relationship with my health care team? Find a health care worker who understands you Change your doctor Make a complaint As a last resort, consider changing clinic 15 Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009

16. Using other health care workers You may need to use other health care workers including dentists [1] In some countries people living with HIV are treated by Primary Care Doctors who are skilled in multiple diseases [2] Community-based organisations may help you find a HIV-aware Primary Care Doctor or an HIV-friendly dentist who can support the care you receive from your HIV specialist [1] 16 [1] Expert Opinion of author Robert Fieldhouse as well as the BEST Advisory Board and Review Committee; agreed on 24th September 2009 [2] Madge S et al. HIV in Primary Care brochure. Medical Foundation for AIDS and Sexual Health 2005