Learning Disability Wales, All Wales People First, The Wales Carers Alliance and Mencap Cymru note with relief that the NICE COVID-19 rapid guidelines for critical care in adults have been amended. But we remain concerned that the guidance may still leave disabled people vulnerable in the face of the Coronavirus outbreak.
In particular, we are concerned that disabled people, who are already subject to significant health inequalities, will be further disadvantaged through these guidelines. We know that poverty is a significant factor in accounting for differences in life expectancy between disabled and non-disabled people. It would be truly tragic if the disadvantages that disabled people have accrued over a lifetime are now used against them when it comes to accessing lifesaving care.
The original guidelines, issued earlier this week, had said that all patients entering hospital should be assessed using the Clinical Frailty Scale (CFS). Where resources are scarce, the CFS rating would then be used as a guideline to determine whether a patient should be given medical treatment in intensive care units. The CFS was originally developed to assess the specific care needs of dementia patients. According to the guidelines, “the purpose is to identify patients who are at increased risk of poor outcomes and who may not benefit from critical care interventions.”
The guidelines had been criticised on the grounds that they would make it more difficult for people with a learning disability and other disabled people to access care. In response to this criticism, the guidelines have since been changed. On the updated website there is an addition to the original guidelines, which states:
“On 25 March 2020, we amended recommendations 1.1, 2.2 and 2.4 to clarify that the Clinical Frailty Scale should be used as part of a holistic assessment, but should not be used for younger people, people with stable long-term disabilities, learning disabilities or autism. We also changed the title of the guideline to clarify that it only applies to adults.
Be aware of the limitations of using the CFS as the sole assessment of frailty. The CFS should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism. An individualised assessment is recommended in all cases where the CFS is not appropriate”
We welcome this change and the acknowledgement that needing a higher level of support does not equal frailty and should not mean that anyone is denied life-saving treatment. However, we remain deeply concerned that other criteria used to determine risks and benefits of critical care might still disproportionally put disabled people’s lives at risk.