Yesterday I attended a Policy forum at Health Consumers Alliance (SA) to have a voice as a consumer about policy wishes for the next election in South Australia. It was an interesting meeting, with excellent input from the organisation and other consumers.

Mental health, the homeless, and aged and dementia care were well represented, as well as acute care in hospitals and some age discrimination and service issues. Whether we, that is, ‘Consumers’ can actually impact government and policy makers is always questionable, and we also discussed the often tokenistic acceptance of our involvement.

The organisation had a couple of banners in the room, which seemed to emulate my own wish list perfectly. The first phrase is one I’ve also been using for years, and had borrowed from The Scottish Dementia Working Group.

The HC (SA) banners make the following statements:

Banner 1

“Nothing about us without us”

• honesty
• inclusion
• participation
• respect

Banner 2

“Wellbeing through health for all South Australians”

• equity
• support
• collaboration
• dignity

These statements and lists sound very reasonable, but as yet, people with dementia (and a number of other marginalised groups), are not yet being treated this way. I see them a ‘Wishlist’. For example, I’m still waiting for a number of the organisations who say they represent and advocate for people with dementia, to include us in their organisations, especially at their conferences and events, and to involve us in the planning of these things. Currently, they are missing many of the points above.

Obviously, I will continue to advocate for this type of change for as long as I can, and will work further with the suggestion that HCA (SA) might be also able to advocate for issues such as this.

Having a voice is one thing, being heard is another… and seeing real change and action is the final step, the one we often fail to see. The other issue as an advocate, is to NOT  GIVE UP, as sometimes we do, just before the change starts.