Health Care Consumers' Association was incorporated in 1978. We've not documented our history so far, but are thankful to Janne Graham for documenting her reflections of the organisation back in 2003. Janne's reflection on Health Care Consumers' can be found below.
The amazing thing about growing old is finding that your memory is other people’s history. So in the absence of an official history of HCCA which is yet to be written I have jotted some memories of the organisation’s early days.
I believe that I attended a meeting of Health Care Consumers some time late in 1979. I had been drawn into the fold by Dawn Chamberlain, a tireless worker and advocate. Among her many skills were two which accounted for the effectiveness and growth of the organisation. Firstly she listened and quickly identified people’s needs. Then she put people with similar needs and experience together (we didn’t use the term networking in those days). These activities spawned a range of self-help groups in the health arena. Certainly I recall an asthma group in those early days and the forerunners of SIDS and KIDS. There was a group for parents with children in hospital. All these came under the
auspices and protective wing of the fledgling Health Care Consumer organisation. A second skill she used to effect was to “spot talent”. She drew me in following a disability meeting and had already encouraged Lesley Barkley (later Professor). Later Val Brown drew me into the arcane activities of the National Health and Medical Research Council and was for a time, what we now call, my mentor.
I joined a committee which was putting the last touches to a Constitution and finalising incorporation. Records will show, but I have a sense that, we were about Number 79 to be so registered in the ACT. Of course there was the best of talent already there. The Chair was John McMillan, later a Professor in Constitutional Law at ANU and now Commonwealth Ombudsman and John Braithwaite subsequently Professor of Criminology at ANU and a pioneer of pre-sentence alternatives. The two John’s with Kate Beauchamp had earlier formed Rupert Public Interest Movement achieving high profile and effective community debate on a number of social issues of the day.
I understood at the time that the committee had come out of a sub-committee on health from the ACT Consumers Association having determined the need for a separate voice on health issues. This was later to be mirrored nationally when Consumers Health Forum was sponsored by Australian Consumers Association and other community and health interest groups.
At about that time there had been a group formed primarily by health workers from the community sector including doctors working in public health, and Wendy Grey, nutritionist. Whether the two groups blended or one was taken over by the other I am not sure. Certainly the constitution was very strong on the proportion of the committee who could be employed in a health service and prevented such a person being the Chairperson. In the early years there was a lot of moral support provided by health workers who were concerned about the dominance of the hospital culture and the medical model. Sound familiar?
Interestingly, later in the mid eighties Health Care Consumer Association sponsored the development of an ACT Community Health Association which catered particularly for this overlapping interest. Erica Fisher has been an ongoing supported of both areas.
In the early days the association developed a “speaker’s kit” and we went around to church and community groups talking about health issues from the perspective of users. We had a slide set of illustrations promoting active consumer engagement in general practice consultations. Reception was mixed. Many thought we should just trust our doctors. Were we ahead of our time or did we contribute to the change in community attitude?
The hay days were in the early 80s when self-government was being threatened and ACT services were being established as entities somewhat separate from their parent federal departments in preparation for a hand-over. In early 1983 we ran a one day conference “Action for Health” which was attended, to our amazement by about 200 people. Our membership reached a peak that year at, if I remember correctly, 143. The conference set up from its attendees a series of committees to address in more detail issues of concern for identified social groups: the young, the old, people with disabilities and aboriginals. We set up task forces to develop a model for community and consumer participation in health management and mechanism for addressing consumer complaints. A follow up meeting to report back six months later was also well attended. Without knowing it we were establishing what is now called “buy-in” from the community. Certainly we had developed an understanding of accountability.
We argued strongly for identified consumer representation on the newly established Health Authority and the Community and Hospital Boards. Representation was not agreed to but we got our nominees up on the Authority (Lynne Grayson) and the Community Health Board (Erica Fisher). The model was later abandoned. With Lynne and Erica we agreed that it was because community representation had been too successful and vested power was reasserting itself.
We helped set up SHOUT. We have had an on-going presence in health debates locally and nationally. I was HCCAs nominee to Consumers Health Forum and Russell has continued this tradition of local support for this national body.
In the 90s people like Sheila Holcombe helped us to set our sights higher, to identify funding and employ our first coordinator. Prue was made for the role and has helped to grow and expand the work of the organisation. From so we come from history to the present. The rest is your story.
It will take a deeper analysis than I can give (and a more impartial one) to determine the effectiveness of the association over the years. At the very personal level it, and the people in it, gave me the experience, support and skills to create a role for myself as a health consumer activist, locally, nationally and even, for a brief, heady period, internationally. And I’ve certainly seen some changes along the way!
Janne Graham, 2003.