You will find a more Wordy Introduction here and we give a Wordy Summary below:

To assume that healthcare is inherently humane, caring and healing ignores the fact that some people do not experience care in these ways. Recent scandals, inquiries and reports into Winterbourne View, Whorlton Hall, Mendip House, Slade House and Yew Trees Hospital have revealed the tragic consequences of dehumanising care for adults with learning disabilities and/or autism These include ignorance, indifference and diagnostic overshadowing on the part of professionals (where underlying health conditions such as constipation or epilep/sy are missed and symptoms incorrectly attributed to learning disability). Uptake of annual health checks, screening and follow up appointments are low and there is evidence of inappropriate prescriptions of psychotropic drugs. MENCAP concluded in their 2007 report Death by Indifference that the failure of healthcare services towards people with learning disabilities, their families and carers ‘is a national disgrace. We say this is institutional discrimination’. 

Prior to the pandemic, people with learning disabilities (including those that also have autism) already died 20-30 years earlier than their non-disabled counterparts. By Autumn 2020, people with learning disabilities and/or autism were six times more likely to die from Covid-19 than the rest of the population (Public Health England, 2020). Controversies associated with the Clinical Frailty Scale, healthcare rationing, Do Not Attempt Cardiopulmonary Resuscitation Notices, the care home crisis and inconsistent access to vaccines have had the cumulative effect of devaluing the human worth of people with learning disabilities and/or autism. Despite many decades of attempts to promote empowering and holistic care practices - under the banner of person-centred care - people with learning disabilities risk being rendered expendable and disposable by the failings of healthcare.

Our project calls for a new approach - Humanising Healthcare - to identify principles and practices of empathy, dignity, compassion, kindness and recognition with a specific focus on adults with learning disabilities. We do not seek easy answers nor quick solutions though we are mindful of the urgency to radically change healthcare.