Sheffield campaign's disability rights protest forces U-turn on coronavirus critical care policy

Equalities and Human Rights UK, whose headquarters are in Sheffield, threatened legal action over the critical care advice for the NHS as families feared that disabled children, young people and adults, including those with autism and learning impairments, might be denied treatment.

The National Institute for Health and Care Excellence (NICE) has produced a nine-point framework, with scores of higher than five determining uncertainty of the benefits of critical care.

Those who are “dependent on personal care from whatever cause” are scored at level seven. The guidance said doctors should assess patients with “learning disabilities, autism and other limiting conditions as scoring high for frailty”.

The scoring system was heavily condemned by Equalities and Human Rights UK for “smacking of eugenics” and for failing to adhere to public sector equalities requirements.

The guidance on critical care is now being rewritten.

The campaign was backed by Sparkle Sheffield, which supports families with children with autism, and the Autism Union.

Chrissy Meleady, director of Equalities and Human Rights UK, said: “Whilst understanding the pressures upon our NHS at this very challenging time, it is essential that we as a nation do not lose sight of every person’s inalienable human rights, including the right to be given an equal chance to live and to be aided to recover from illnesses too.

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“At this very trying time compassion should not be set aside and certainly eugenics, underpinned by a presenting ethos of ‘life unworthy of life’ on the basis of people being Disabled, should have no place in our modern Britain.”

Liesje Dusauzay, the chair of Sparkle Sheffield, said: “Sparkle Sheffield was shocked at what was being planned for Disabled people accessing critical health care during this emergency and were absolutely inundated with adults with autism and families who have members with autism calling us desperately frightened for the safety and well-being, in the event they contracted the virus and were required to go to hospital and what might happen to them if they did.

“Whilst NICE have confirmed they will rewrite the policy and their guidance, there is is still the concern that they thought to discriminate against Disabled people in the first place on what is a life and death matter and we are grateful to Equalities and Human Rights UK for their promise of onward monitoring and further challenge where necessary if NICE or any other reneges on what has now been thankfully agreed.”