On 25th of March, Duchenne UK wrote to NICE to express our concerns about publication of the NICE COVID-19 rapid guideline critical care.

In our letter (read in full below) we said that we had been contacted by a number of patients living with Duchenne Muscular Dystrophy who were concerned that the assessment of frailty - laid out in the rapid guidelines for critical care - would hugely negatively affect those living with DMD and other disabling conditions.

Many other patient organisations sent in similar concerns and we are pleased to say that NICE has now updated the guidelines.

To read the updated NICE guidelines click here.

Wednesday 25th March 2020

Dear Gill,

COVID-19 rapid guideline: critical care

We welcome the publication of a COVID-19 guideline for critical care to help the NHS manage care at such a challenging time.

We have been contacted by a number of people living with Duchenne muscular dystrophy (DMD) or by their family members who are very concerned that the assessment of frailty will disadvantage those living with DMD, and other disabling conditions who may score poorly on standard measures of frailty.

Whilst we recognise that the guideline allows that critical care may be an appropriate option for those scoring poorly on the frailty measure, we are concerned that this message is not clearly conveyed in the guideline. We are concerned that this could result in poor implementation for the guideline, particularly as patient numbers rise and capacity in critical care is stretched. We understand that difficult decisions will need to be taken by clinical teams during the pandemic, but pre-existing disability should be a determining factor in access to effective care.

We urgently request that you issue further clarification that the frailty score should be treated with a degree of caution when used to assess people with pre-existing disabilities. Acting now would help ensure patients with DMD or other serious conditions are not denied care even when they would have a reasonable chance of returning to a similar health state as they experienced prior to contracting COVID-19.

We look forward to your response.

With very best wishes,

Emily Crossley and Alex Johnson

Co-founders of Duchenne UK