It seems the ‘experts’, namely those people who work in a field, but may not have any personal experience in that field, are always considered and called the experts, and the patients or consumers who are living with the experience or disease are often treated like morons or idiots, as if they have no expert insight or understanding of that topic or sector.
This of course, has happened in the dementia sector, even though people without dementia have no idea what the lived experience is actually like. I am regularly asked to contribute to state, national and international work on dementia, and most of the time, my previous knowledge and current qualifications are ignored, and I am written up in the final report or communique as a patient, person with dementia, or consumer.
This is totally unreasonable, and offensive, and it is time all people with dementia started to request their qualifications, pre dementia experience, knowledge and careers are recognised, in the same way as everyone else if they are providing expert advice to anyone else. In fact, we should start charging a fee for it! We are no longer willing to be someone’s ‘tick box’ so they can say they have included us, and instead want an equal place at the table. Mini rant over… 🙂