1. Support for the leader(s) and succession planning

Leaders of support groups for people with HIV/AIDS tend to be the "only" person in the group responsible for "everything" (be it in reality or due to psychological pressure from the leader on her/himself). Burning out can happen quickly and easily. I focus a lot on supporting the leader and trying to convince him/her to share the work with other people.

 

What I think is important is be able to provide "supervision". At AIDS Concern, we meet with staff individually once a month, to go through work and personal issues. Feedback from our staff is very positive and they say they find this useful. Through these meetings, they can discuss their issues with other people, get things off their chests, see things from another perspective, brainstorm, and learn new skills.

 

Interface with other leaders in similar situations: Can the leader of the support group be put in touch with other support group leaders, so that she can share her frustrations and/or happiness? Sometimes it helps because through this, the leader comes to understand that s/he is not alone. In the last year, I began to talk to people who are also heads of NGOs, and I gradually gained the strength and confidence to feel that I'm still sane!

 

Grassroots AIDS support groups need to think about identifying potential members to create a culture of shared responsibilities, task delegation, and a sense of ownership. This will prevent the development of a leadership vaccum if the main leader leaves the organization for whatever reasons. Leaders also need to have financial support. It doesn't have to be a CEO or banker's salary, but some type of financial support is essential. Otherwise the individual will ask why s/he bears all these responsibilities while other people just enjoy the positive changes.

 

2. Advocacy with Chinese characteristics

I doubt if there are Chinese characteristics of advocacy (but I use the term here anyway) because I believe what I'm going to say happens in other parts of the world also. But certainly in China, being a doctor or a nurse is regarded (both within the profession and by society at large) as a sacred occupation. They are seen as superior professionals who cannot be challenged AT ALL. In terms of AIDS treatment advocacy, I'm afraid that constantly challenging the doctors/nurses may not improve the situation - that is, unless you happen to encounter doctors and nurses who are extremely open-minded, such as those who are willing to give up their well-paid jobs and travel to developing countries to do humble relief work.

 

My experience here is, in order to get what I believe is important (e.g. more concrete guidelines for ARV treatment), I need to learn to speak the doctors' language. I need to try (yes, try and sometimes pretend) to understand their problems, to let them know that I can be trusted and that I can be one of their allies.

 

Indeed, I find doctors are now more comfortable to voice their problems (it's always related to funding, policy making processes, etc.) with me. In turn, I try to lend a helping hand to them. As a result, I now have very good relationships with doctors and nurses. We can just pick up the phone and ask for help from each other.

My key words in nurturing such relationships are: communication, patience and transparency.

 

3. Prioritization

Even a big group cannot do everything. Every group has to prioritize their needs and wishes according to their strengths. I think this is very important. It's just too difficult if a group chooses to work on issues that are a low priority and at which they are not good. The same is true if the issue they work on are a high priority and no one has the skills to manage the work. It's too self-defeating.

 

4. Marketing/sales techniques

I sometimes think that advocacy is a marketing/sales pitching process. In other words, how we package the story and sell it to others affects the impact we have. At the same time, there is no need to be a chameleon. I believe grassroots support groups can try to act like salespeople when talking to the doctors/nurses, even if they are just advocating for a single individual for better access to ARV (or for painkillers).

 

Also, think ahead of time about what may be the reasons (or excuses) they will use to reject you, and prepare your answers. To prepare, it's helpful to do role plays during training, and to share experiences and techniques among group members when they are out in the field.

 

5. Show appreciation

There are some good-hearted doctors and nurses, and sometimes people simply turn their anger on them since these doctors have to implement unpopular policies. One thing I found out while building relationships with doctors and nurses is that these people rarely receive appreciation. Nowadays, I show more of my true appreciation, be it over the phone or through formal letter-writing.

 

I find it a very useful weapon because the appreciation can also be used to press on the next item on my wish list! I think this is what Chinese call "A mouthful of sugar and a mouthful of feces" 一啖沙糖一啖屎!

Please share comments if you'd like to clarify my points, add more suggestions or even to disagree.

 

Loretta Wong is the chief executive officer of AIDS Concern in Hong Kong, www.aidsconcern.org.hk.