I was at a meeting the other day to discuss consumer involvement in our health system. It was to discuss the local history of this involvement. As the report was being explained and discussed it occurred to me that as older people we are the source of much unwritten knowledge. In this case because a health department was involved there was quite a bit of written documentation which showed the history of this development from when it started. Initially, and to some extent still today, health officials feel that they know all about health so why do consumers need to be involved? It took, and still takes, quite a bit of time to persuade some ‘experts’ that they know about health from a clinical point of view but health from a patient’s viewpoint is very different. This was the subject of the recent book ‘Dying for a Chat’, the experience of an elderly lady admitted to hospital. Even though she was elderly and would probably have preferred to be left to die in peace, each clinical department had treatments they wanted to try to get her better. Particularly where machines, often very expensive ones, are involved there is the temptation to use them. The poor lady died several days later in not very comfortable circumstances. Even though she was quite capable of being told what was happening and asked her opinion, nobody did. She suffered unnecessarily because of this.
Getting back to the local history, the records only went back to when consumer involvement started. It began to occur to me that I and a group of like-minded mothers had been involved in fighting the same health authorities to try to allow us to stay with our children in hospital earlier than this. We know today that this such permission would have speeded recovery. After all, a child will take longer to get better if they are scared stiff, thrust in with a lot of strangers with often painful things happening to them, and separated from their mothers. We mothers knew instinctively that we needed to be with our little ones.
Our fight with the health authorities wasn’t recorded as it wasn’t dealt with officially. It was our private fight with them. We finally made them agree to let us put up camp beds beside the children’s beds at night. None of this was recorded as we weren’t an official body so it only exists now in the memories of us older mothers.
To me it is against this type of background that the involvement by a community organisation becomes more necessary as it can now be recognised and dealt with officially. The development of community groups to fight for patient’s rights takes on a very different meaning when compared with the vacuum which existed before this happened officially. To me the existence of this vacuum should be part of the history as it is now going to be.