Had a v poorly little boy to look after for the last 4 days, (mercifully through the worst now). And next to worry for my son's wellbeing, do you know what the overriding feeling was? Fear. Fear of the medical profession getting their hands on my son. Are you proud of yourselves?
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Yes, and there are many many more in this group of people and families failed so badly.
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I was only talking to someone about this recently. We need a way to measure our numbers. A place where we can all tell our stories & have them be there for others to learn from. I don't think the scale of this will be appreciated until we ourselves make it clear. Nobody else will
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The challenge to do this IMO is always money & time. A fortune of public money is spent on denying the truth ('experts', reviews, 'listening events', consultants etc.) & ridiculous schemes like
#FTSU which are designed to keep a lid on things. Whilst those affected are isolated. -
Totally agree. And public money is also spent on a cursory nod to patient involvement, which is supposed to come in the form of organisations like the Patient's Association & Healthwatch. Both of whom refused to help with my concerns. False advertising, imho. Part of the problem.
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I've no confidence is either the Patients Association or national Healthwatch. Local Healthwatch's can be helpful but IMO they're 'under the thumb'. In the NHS bodies such as NHS Horizons also act as barriers to transparency & prop up the toxic culture.
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Such orgs represent the 'controlled voice of opposition' for me these days. Best way of ensuring you win an argument is to control both sides of the debate. Something both the NHS and gov more generally clearly worked out a long time before I clicked.
End of conversation
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