I was thinking on the inability of the NHS to allow for ME 'disability' in access to treatment.
It's obvious from my own recent dealings that no one is reading the updated NICE guideline as they either don't know about it or don't care as it is not their 'Speciality'.
The NICE guideline is in their mind something that only applies to medics who treat ME and has nothing to do for when we present at hospital.
So, as an example when need medical care no one considers if we can leave our homes for medical treatment or if we can cope with A&E or wait in a crowded room for hours on an ordinary medical appointment.
Trying to explain to a Security guard in A&E that i couldn't sit up resulted in being manhandled physically.
When I had cancer I was on a NHS treadmill that didn't ever consider if I could cope with the conditions of being treated. That I fell off the treadmill was my fault in some way.
I 'should' have been able to cope with it like 'everyone else'.
When I listened to the NHS staff at the inquest I was struck by their inability to allow for the ME being a disability that made their standard treatment unworkable and their unwillingness to plan around it.
linkIn 2016, Oliver’s Campaign was born, following his tragic death in an NHS hospital. The campaign is led by Oliver's mother, Paula McGowan OBE, who believes that all health and social care staff need appropriate and meaningful training to help them to understand people who have a learning disability and autistic people.
NHS staff have all been put on training about looking after people with autism and learning disabilities, which covers sensory processing issues and listening to people when they can't communicate in the way the staff want them to, listening to and involving carers, etc.
There are a few levels of training, for different roles.
Some of the principles overlap here, when I read what happened to Oliver I was also thinking of the cases of people with severe ME being neglected and abused in hospitals.
Eta: evaluation slide pack (particularly look for 'behavioural changes'
Eta 2: what happened to Oliver
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