The Politics Of Stigma With ME/CFS

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From a blog by Catherine Hale.  (Follow @octoberpoppy)

 

Last month my “shocking” report with Action for ME, Close to Collapse was released, showing the massive failure of the UK social care system to meet the needs of people with the chronic illness ME (otherwise known by the dreadful term Chronic Fatigue Syndrome).

For anyone new to M.E., forget the implication that we’re just “tired all the time”. ME is extremely debilitating, both physically and mentally. In fact, research shows the ME patient population has lower scores for physical function and quality of life of any chronic disease group.

So 97% of the 850 people with ME who took my survey needed help with 2 or more activities of daily living like going to the toilet, dressing or getting to a local shop. In terms of the Care Act, this means they met the main threshold of eligibility for social care in England.  Yet only 6% were receiving a social care package.

The news was not “shocking” to the ME community. Neglect, lack of support and even hostility from health and social care services are, sadly, the norm for us. Those who are most in need of help are too mentally and physically incapacitated to negotiate the social care system or any other bureaucracy independently.  That partly explains the care gap statistics from my research.

 

To read the rest of this blog by Catherine, click on the link below:

 

Link to Catherine’s Limited Capability blog

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