The "How We Survive and Thrive" report reveals that individuals with learning disabilities in England suffered death rates up to six times higher than the general public during the pandemic. Systemic oversights included misapplied "do not attempt cardiopulmonary resuscitation" orders that were influenced by flawed clinical frailty metrics. Advocates are urging comprehensive reforms, including emergency prioritisation, accessible communication, and GP register additions to prevent avoidable deaths. However, funding pressures and a shrinking specialist nursing workforce threaten vital review schemes and staff training.
Key points
Healthcare planners frequently overlooked individuals living in family and community sett…: Healthcare planners frequently overlooked individuals living in family and community settings during the Covid-19 pandemic.
Prejudiced assumptions about quality of life and withdrawn clinical frailty guidance impr…: Prejudiced assumptions about quality of life and withdrawn clinical frailty guidance improperly led to DNR notices.
Severe budget cuts to social care risk undermining critical safeguards, including mandato…: Severe budget cuts to social care risk undermining critical safeguards, including mandatory staff training and death reviews.
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The fear that so many felt as the death toll rose during the Covid pandemic was magnified for Fiona Walker. “I know from experience they wouldn’t have valued my life,” she says, in a new report on the treatment of people with learning disabilities during the crisis.
The 1.5 million people in the UK with learning disabilities, and their families, had reason for concern. Death rates in England were four to six times higher than average for people with learning disabilities. As is now well established, the pandemic did not create inequalities; it exposed and intensified them. People with learning disabilities die on average 19.5 years earlier than people without, and deaths are almost twice as likely to be classed as avoidable.
Learning the lessons means listening to people with learning disabilities and their family carers. Ms Walker and others were commissioners for the new How We Survive and Thrive report led by Learning Disability England, working with researchers from the University of Birmingham and Manchester Metropolitan University. It describes how families were abandoned by planners in the pandemic, though…
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