Sod it. I'm going to say something. It is abundantly clear that there are *still* failings at Certain Hospitals That Should Know Better By Now (in the wake of multiple PFD reports). But it *shouldn't* be up to pwME themselves to have to leap into action every time someone else is at risk. 😒

Show Post

And at least 2 of them in the same hospital. NO lessons were learned, and the delivery plan doesn't address any of this. Some have discharged themselves and are now suffering at home & trying to survive without any support. At least 2 are stuck in hospital and deteriorating there. 2nd most recent:

Show Post

It's the Medical Director who has clinical authority, not the CEO. Head of Patient Safety too. Carers of pwvsME have saved several lives from medical neglect nationwide this way.

Show Post

This week the consultant told the nurses not to feed the person with ME while they were paralysed (15 episodes of paralysis so far due to autonomic failure) and not to provide meds or supplements. We have gone through complaints, safeguarding and will be writing to the CEO

Show Post

I can't provide personal details but certainly can confirm that we are advocating for someone who has been in hospital since end of July. Their hosp consultant is not acknowledging the advice from a private cardiologist and is insisting that they have FND and ignoring their ME and other conditions.

Show Post