COVID-19: an open letter to NICE

Published Date
Laura Burge
Two books and a pen

Muscular Dystrophy UK has written an open letter to NICE responding to its guidance on critical care for patients with COVID-19.

The letter, which you can read in full below, follows the response we posted yesterday on our website expressing concerns about the guidelines.

Our open letter to NICE

We are writing this letter in response to the new NICE guidelines on critical care for patients with confirmed COVID-19.

As the charity for 70,000 people with muscle-wasting and associated conditions, we have serious concerns about some of this guidance. We are seeking greater clarity on it as a matter of urgency.

You state that all patients with confirmed COVID-19 will be assessed on the basis of “frailty” when healthcare professionals are making decisions about whether to admit a patient. This concerns us, because we fear such guidance could be used to deny people with muscle-wasting conditions treatment.

We recognise the NHS is under extreme pressure during these uncertain and unprecedented times. But everyone has an equal right to access healthcare. It is not appropriate to judge an individual’s quality of life based purely on what they can physically do.

A further update from you this week advised the Clinical Frailty Scale, used to assess frailty, “may not perform as well in people with stable long-term disability… whose outcomes might be very different compared to older people with progressive disability.” Some conditions and disabilities are mentioned within this update, but there is no mention of muscle-wasting conditions. We would welcome a review of the conditions that are specifically listed and greater clarity on this.

This is already a scary time for disabled people and their families. We have heard from many people who are understandably concerned and anxious. They need reassurance and support right now.

We hope you recognise and understand the points we have made, and strongly urge you to address these as quickly as possible.

In the meantime, we will continue to support and update people with muscle-wasting and associated conditions through these difficult times.

Catherine Woodhead, Chief Executive, Muscular Dystrophy UK

Muscular Dystrophy UK is continuing to support people affected by muscle-wasting conditions during this time. Our latest guidance can be found here.

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