I’m so sorry. Not ok. Thanks as ever for all you do.

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Feels increasingly as if programs are limping along, but becoming yet another drain on the energies and capacity of those already coping with appts, prescriptions, uncertainty, don't do lists, do do lists, seeing a different doc each time, cancelled appts and unclear information

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Of course it could just be that with uncertainty turned up, scepticism becomes a valid coping mechanism.

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Summing up a feeling I've not been able to ignore over the last 18 months in, is this worth doing with NHS and charity organisations. Things getting worse in the sector and the Patient Voice programs continue without there being any means to follow up on any progress attempted.

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Put people with lived experience on FIRST. I’ve only seen this in one conference in Quebec City. It made a huge difference.

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