Carers must speak up

Aged care is one of the few areas where consumer action has been slow in coming. Research has shown us that hospitals are safer and better when the consumer voice is heard. That is why they employ patient advocates and support community advisory committees.

Those who have actually experienced a particular health service often have a fresh perspective to offer. They see things through a different glass.

Yet in aged care, the consumer/carer voice is rarely heard. I doubt it is heard at all those big conferences on aged care or on the various committees and boards where aged-care policy is discussed. The one exception I can think of is the recent review of the Aged Care Complaints Investigation Scheme review conducted by Associate Professor Merrilyn Walton where individuals and families were consulted as well as the usual peak bodies and provider groups.

In aged care the culture is too much about knowing what’s best for ageing people – without asking families their views. It is too much about ‘them and us’ ignoring the disagreeable fact that we all get old and most of us will eventually need some kind of care.

Of course the response to this view is that it is impossible to include frail older people in all the talk fests on aged care. It is true that it is difficult as people at the end of life often experience high levels of disability yet there some residents within our aged-care homes who would have valuable insights to offer.

I think my mother, for example, might have mentioned something about the quality of food she was offered after the food production was out-sourced at her nursing home. Sadly, one of the factors preventing the aged voice being heard is the fear of retribution if people do, in fact, speak their mind.

In any case, the families with loved ones in care have much to say. Aged Care Crisis hears it every day. And it is time that policy makers listened as there is much to learn about how we care for older people and the difficulties that we must try to overcome.

We should also remember that, with the best will in the world, it is hard for the aged care professional not to become the difficult task they do. People at the end of life find that they can quite easily become merely... a ‘feed’, a ‘shower’ or a ‘toilet change’! The consumer voice can mitigate such institutionalisation.

Here are some questions for starters.

  • Why aren’t consumer/carer advocates – individuals who have had recent experience of the aged-care system themselves - present on all those accreditation panels that go around checking on nursing homes and hostels? People who have been travelling beside their family member in aged care homes might have some quite different things to say about the standards of care, about the food being served and about the staff/resident ratios.
  • Why aren’t there resident and family committees in every residential care facility – ones that are supported, not patronised and have their concerns taken seriously?
  • Why aren’t there places provided for those who are currently experiencing the aged care system for their family members at all those big conferences that occur so that their voice is heard in those discussions?
  • Why isn’t far more cognisance given to complaints made by families about the care provided in homes – here is a rich source of data which seems to be generally ignored.

For too long the consumer voice has been absent from aged care. That is why families must walk beside their frail aged relative and speak about what they see and hear and why those who are responsible for providing the care for people at the end of life should listen to them.