It's frustrating when you're visiting different hospitals for treatment and information doesn't filter through from one team to another. The most basic example of this is having to repeat blood tests 3 or 4 times because the information is not accessible between teams. Acute medicine can sometimes feel like the overall person and their wants/needs/aims aren't taken into account. It would be great to have a better co-ordinated approach to help put the person first.
I'd love to see the creation of a care co-ordinator role (maybe nurse or GP-led) who you can talk to and who can liaise on your behalf between your various medical teams. This person approaches your care from your personal perspective - assessing your hopes/needs now and for the future, and trying to filter them into the teams who are making decisions about your care. Perhaps this is your GP - if so a dedicated appointment giving you the chance to discuss your care would be needed.
This would be much easier if all my test results were available online in one record - perhaps held by my GP - and under my control so I could share them with anyone I wanted to
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