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Beth Campbell Duke's avatar

Absolutely! At the base of the systems is a lack of concern for care. It can't be entered onto a corporate spreadsheet and it flies in the face of individualism. I have been starting to learn about the 'care economy' and there is such a loooong way to go. It's not that we aren't yelling - it's that we are not heard.

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Victoria's avatar

Every caregiver I know has employed a ‘workaround’, a spreadsheet, a way to get information..we don’t need productivity organisers. The minimum we need is a system that we can trust and communications that are reliable, fast and accurate to ALL health stakeholders for the person. Often we have to chase, follow up and close the loop to ensure timely actions. Don’t get me started on Emergency situations. I count our blessings for the doctors and specialist nurses that we have built relationships with along our cancer journey.

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