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COVID-19: How those with Disabilities must not be treated differently

The National Institute for Health and Clinical Excellence (NICE) is an agency of the National Health Service charged with promoting clinical excellence in NHS service providers in England and Wales. They are responsible for developing guidance and recommendations on the effectiveness of treatments and medical procedures.

On 20 March 2020, NICE published its first 3 rapid guidelines for healthcare practitioners who are dealing with patients and patients suspected of having or confirmed as having COVID-19.

The purpose of these guidelines was to;

  • Maximise the safety of patients
  • Enable services to make the best possible use of available resources
  • Protect staff from possible infection.

The Guidelines on critical care provided that all patients admitted to hospital, irrespective of their COVID 19 status should continue to be assessed for frailty using a recognised frailty score. Following publication, NICE was hit with an immediate backlash from campaigners concerned with, those working with, and from families of persons with disability.

This backlash was due to the fact that the guidelines in their present form would allow for patients arriving at the hospital who have learning disabilities, autism and other limiting conditions would score high for frailty. This could mean that they would not be given access to the life-saving equipment needed for those seriously affected by COVID-19.

NICE was also threatened with legal action on the grounds that the wording was such, it could be deemed as discriminatory and against a person’s Human Rights.

Edel Harris of MENCAP the disability charity stated;

“These are unprecedented times and our NHS is under extreme pressure. But people with a learning disability and their families are deeply troubled that the latest NICE guidance for NHS intensive care doctors could result in patients with a learning disability not getting equal access to critical care and potentially dying avoidably. These guidelines suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently – all things that people with a learning disability often need support with – might not get intensive care treatment. That’s why we urge NICE to include specific guidance on learning disability to make it clear that healthcare professionals should not judge patients on their cognitive ability when making life or death decisions.”

MENCAP’s websites states;

On 23 March 2020, Disability Action asked NICE to amend the guidelines to include additional guidance in partnership with disabled persons and organisations for what was going to be difficult times ahead. Healthcare Professionals should have guidance to include and reflect disabled people.

NICE responded with;

We have listened to concerns raised by patient groups about the application of our rapid COVID-19 critical care guideline.”

On the 25 March 2020, NICE amended the recommendations to clarify when and how to use the Clinical Frailty Scale as part of a holistic treatment.

As part of Safespaces ongoing assistance to children and adults with disability, we are currently looking to donate some of our beds to the new Nightingale field-hospital facilities, which will be sited in London, Birmingham, Manchester and Glasgow for as long as they are needed.

The Siesta Hi-Lo beds are specifically designed and built to accommodate a person with a learning disability and complex needs, where a standard hospital bed would not be an option.

It can sometimes be difficult to treat people with learning difficulties and autism and with the added issues that treating COVID-19 patients brings, we believe that our beds will provide the safety and assurance to the Disabled person and their family who may not be able to be with them at this time and to the Healthcare professional, who we know will require ongoing support in any way possible through the difficult and trying times ahead.

Authors: Jill Morony and Joanne Lewis from Safespaces.

Sources: 

  • MENCAP
  • NICE
  • Disability Action
  • The Independent
  • Construction News

Information Links: 

Clinical Frailty Scale: https://www.scfn.org.uk/clinical-frailty-scale

NICE Guidelines: https://www.nice.org.uk/guidance/ng159

NICE critical care in adults algorithm: https://www.nice.org.uk/guidance/ng159/resources/critical-care-admission-algorithm-pdf-8708948893