We work closely with Terrence Higgins Trust and to encourage self-management and independence. The forums at MyHIV are of huge practical and emotional support to many people living with HIV as they manage their own treatment, in partnership with medical professionals.

Self-management is a hugely important element of successful HIV care. By this, we mean empowering each individual living with HIV to look after their own physical and mental health, and their economic and emotional well-being. Peer support can be a huge boost to this effort, and our service places a premium both on excellent doctor-to-patient relationships, and also opening up and providing access to a range of other networks.

In a recent Patient Involvement survey, Baseline uncovered a wealth of data about how people living with HIV feel about their doctors. If you answers the questions in the table below, we’d want you to play yourself in the columns furthers to the right: talk to us about any issues or questions you may have, because we’re committed to giving you the information you need to manage your condition successfully.

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% Poor %
1. My understanding of my test results and what they
meant for my health following the first meeting with my
doctor *
11 19 34 37
2. My understanding of HIV, CD4 count and viral load following the first meeting with my doctor. 10 21 32 37
3. My understanding of the long term implications of HIV treatment following a discussion with my doctor.* 11 25 32 30
4. My understanding of the importance of adherence to my HIV medicines following a discussion with my doctor. 6 9 35 50
5. The opportunity I was given to discuss treatment options. 14 19 31 36
6. My understanding of the benefits and drawbacks of each treatment option following a discussion with my doctor. 15 22 27 22
7. My involvement in the choice of my initial combination of HIV medicines. 29 22 27 22
8. My involvement in the choice of HIV medicines following any change to the initial combination. 11 17 26 6
9. The opportunity I am given to talk about how my treatment is going and whether it could be improved for me. 10 17 30 48
10. The willingness of the doctor to listen. 6 16 39 48
11. The quality of responses from my doctor my questions 4 16 31 48
12. The provision of easy to understand educational information from my doctor or nurse. 10 23 32 35
13. My level of comfort to talk with my doctor about my HIV.* 5 9 27 58
14. My relationship with my clinic. 3 14 36 37
15. How prepared I am for my hospital appointments.* 3 11 42 45
16. My level of understanding of what my HIV doctor is telling me. 2 11 38  49
17. My HIV doctor’s level of concentration during my visit. 4 12 32 52
18. My HIV doctor’s attitude to me in terms of acceptance and being non-judgemental about my life and healthcare choices. 4 9 23 64
19. My HIV doctor’s explanation of the importance of adherence to my HIV medicines.* 2 9 35 53
20. My involvement with decisions concerning my healthcare. 7 17 33 43
21. My HIV doctor’s explanation of the side-effects I may experience from my HIV medication.* 11 18 36 36
* = Results do not add up to 100% due to rounding.

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More About Self-Management

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The lifelong adjustments required by HIV mean that proper management requires a range of new skills and understandings. Our health advisors, nurses and other professionals are dedicated to helping each of our patients learn everything they need to take control of their condition. Self-management improves a person’s independence, and thus the quality of their life: we have therefore long been dedicated to helping every individual achieve those improved outcomes.

Better knowledge of your HIV doesn’t just help patients stay healthy. Better informed patients can more effectively contribute to the design of treatment plans; they can ask the right questions and know how to read the signs of declining health, in order to improve it again; self-management has been shown, in short, to enhance all aspects of chronic illness care. Not only that, but good self-management means that professionals can focus on where they are most needed and can make the most difference to patients and their peers.

Individuals and groups alike can support each other in self-management, and in understand how their HIV effects them in particular ways unique to their own lifestyle. HIV requires daily decision-making – and those decisions are improved when patients are fully engaged in recognising and coping with the issues and symptoms they are likely to experience. Not only that, but supported self-management allows healthier reactions to stigma and other adversity which may be faced whilst living with HIV. Physiological, social, psychological and financial support can in this way all contribute to great confidence and a better quality of life.

We don’t just advocate self-management – we help you develop the necessary tools and networks to do it successfully. We’ll support you by assessing your needs, directing you to the proper resources (from peer support to financial entitlements and specialist therapists), and equipping you with knowledge and techniques. In turn, you’ll feed back to us and help us improve our service yet further, and direct our care ever more precisely. Self-management is a virtuous circle.


Mental Health Self-Help

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For your further information, we recommend the following self-help resources. These are just a few links to some self-help leaflets for issues such as Alcohol, Anxiety, Depression, OCD, Domestic violence, Sleep and Stress:

Stepiau Mental Health Self-Help Resources

MoodJuice Self-Help Resources

There is also a scheme known as “books on prescription”. This lists high-quality self-help books that have been reviewed by psychologists and approved for recommendation. The full list of these books can be found here.