Week 36 – How not to set up a support group

Prior to your diagnosis, cancer is something that happens to other people. And then suddenly your life is changed, and you have a whole new world to absorb. Starting on interferon treatment is a major change in your life. There is so much new stuff happening, and it can be quite overwhelming.

Quite early on I felt a great need to find support. I contacted the local cancer association (CANSA) and attended their general groups, but found these to be quite limited. I discussed it with the dermatologist, with the oncologist and my GP. They all agreed that more support was desirable, but how to make this happen? If you are lucky enough to have lots of money, or have good medical insurance cover, then at least the basics are covered: Doctor, oncologist, dermatologist, surgeon, anaesthetist, and hospital. These are the obvious services you need.

But unless you are extremely lucky, you find that each of these provides a very specific service, with quite clear boundaries: Each one handles his own speciality, and does not have time to help with the wider issues. For example, just try talking to your hospital about the psychological issues raised by the whole cancer diagnosis… Hospitals may provide excellent services, but they are not equipped to help beyond a certain point, and the best they can do is pass you on to (yet another) specialist.

I battled with this issue, and spent some time looking for assistance. And I did find some help, which I may write about in the future . However, it is not consolidated in any way – You have to go to different places and individuals for each piece of the puzzle.

Once I had found my feet, I thought about starting a support group in my home town. Initially I didn’t really want to commit myself too deeply, as I did not know how much load it would place on me, and frankly I was not sure that I wanted to take on additional responsibility at that time. Also, when I started out I didn’t feel I had much to offer other people. But eventually I decided that I did want to put some effort into this project. I discussed this with CANSA and they encouraged me, but at the same time I got the impression that it had been tried before, and had not been successful. In fact, one person told me that most newly diagnosed patients wanted to do something similar! (As if to say: There, there: It’s a phase we all go through, you’ll get over it!)

I started out working with CANSA. They suggested publicizing the new group via the local community newspapers, and on their web site. Well, we never did get a mention on their website, and it was extremely difficult to get any coverage from the community papers. I read a few of them very carefully, and I could see that many, many deserving organizations were trying to get some coverage. You have to do hard work to come up material which will interest the newspaper editors, and there is competition from much bigger issues. In South Africa, without a doubt our biggest challenge is HIV/AIDS, and other diseases such as tuberculosis and malaria are significant. Poverty in all its guises is a serious problem in South Africa. In the cancer spectrum there are awareness campaigns for breast cancer, prostate cancer, etc, and this is followed by so-called lifestyle diseases: Lung cancer caused by smoking; obesity, diabetes, heart disease, etc…

Even if you manage to get some coverage in the press, there is no guarantee that you will reach the target market – In our case, people who have already been diagnosed with melanoma. The result of this exercise was a big zero: I only had two patients contact me, and both of them were referred to me via my dermatologist.

So about a month back I decided to have one more attempt. I reasoned that I am trying to contact a relatively small group of people. Using the general press to contact them is just not practical: The chances of hitting them are extremely small.

Now, you may be thinking that I have missed out the value of the internet. It’s true that I found the internet to be of tremendous value. www.mpip.org is a tremendous resource, there are many other good resources, and there are blogs of great value. But the penetration of the internet in South Africa is nothing like it is in the US or in Europe, so many people will just not have access to all the material. Add to this that broadband access is still in its infancy here, with most users having to pay per minute for slow dial-up access, and you can see that the internet will not help all patients.

So my new approach has been to contact patients via the dermatologists and the oncologists. In theory this will give me direct access to the specific target group, without wasting time with newspapers, etc. I obtained a list of dermatologists, and developed a mailing list. The oncologists were a little more difficult, and I had to start with a list of hospitals and clinics. After about a day of telephone calls, and a sore ear, I had a reasonably good list, and when I started to get duplicates from different sources I knew I was making good progress.

I put together a mailshot to all of these. Included was a covering letter to the doctor, and a supply of pamphlets with details of the support group and contact information. This went out about a month back. I knew it would take some time before I got any response, as the information has to reach each patient.

So, what has been the response so far? Well, I have to tell you that it is still a big zero! At this stage I don’t know where we are going wrong. Will it take longer than I expected before people respond? Have the doctors ignored my mailshot? Have I run up against the year-end summer holidays? Or is there really no interest in a support group?

In the meanwhile, I have started a simple web site which I will develop into a resource for patients in South Africa. I don’t intend to duplicate the excellent sites already available, so this site will contain some of the info I have previously published in my blog, and provide a useful reference on local conditions. See "Links" at the top of this page.

Watch this space…