Don’t Screen Us Out “Address the Bias” by Lynn Murray

 In Down Syndrome Community Organisations, Down Syndrome News, In The Media

An unforeseen situation, a pandemic, created a necessity for emergency guidance to be drafted for health professionals last month – this wasn’t anyone’s ideal scenario and possibly this situation led to underlying issues coming to the fore. The National Institute of Clinical Excellence, known as NICE, drafted the guidance for adults with COVID-19 who required hospitalisation and critical care.

The resulting ‘COVID-19 rapid guideline: critical care in adults’ included a ‘frailty scale’ for health professionals to apply to patients, the frailest of patients would not be given critical care, such as ventilation, as the risks would be greater than the benefits of such treatment. It appeared from the wording of the scale that people with Down’s syndrome and other disabilities could have been considered as being ‘severely frail’ because of a dependency for personal care?!

Thankfully our learning disability organisations were on the case and the guidance was amended to say that the frailty scale wasn’t to be used for those with ‘learning disability and cerebral palsy’. In addition to this we know that some people with Down’s syndrome and other disabilities are being contacted by the NHS to have a DNR order in their medical notes, that is, agree to not being resuscitated should they be taken into hospital and a situation requires such treatment.  Subsequently, the Daily Mail published an article about how people with learning disabilities might fare if there is a future shortage of NHS resources during the COVID-19 pandemic. When asked for a quote for the article, we told Health Reporter Connor Boyd: “Discrimination towards people with disabilities that starts before birth continues throughout their lives and sadly now it looks like some medical professionals are treating people with learning disabilities as a sub-class of the population to be denied treatment during the current crisis.

The guidance issues that have occurred around people with learning disabilities being assessed for treatment and possibly denied treatment does not align with the equality guidance that the United Kingdom has signed up to.” Much of this is borne out in the ‘Government response to the third annual Learning Disabilities Mortality Review (LeDeR) Programme report’ published in February this year. The LeDeR report was introduced in 2016 to drive improvements in the care of people with learning disabilities after it was found that people in this group were dying prematurely. Three of the twelve recommendations in this year’s LeDeR report came under the heading ‘Addressing Bias’ stressing that; ‘treatment decisions must be based on objective information and never on assumptions about the person’s quality of life.’

Shortly after publication of the LeDeR report, that unforeseen situation occurred, COVID-19 came to our shores, and the NICE emergency guidance was put together. I do understand that the guidance has been modified, thanks to the prompt actions of our organisations, but the offending Clinical Frailty Scale is still very much still in circulation.

Our clinicians at the sharp end, are risking their lives to help get us through this crisis, and it’s essential that they are supported with solid, ethical, guidance which isn’t open to interpretation. The LeDeR report and the Government response are welcome and we look forward to the implementation of the necessary measures needed to transform a culture of bias. In the meantime, as the incident with the NICE COVID-19 critical care guidance has highlighted, we must remain vigilant. COVID-19 must not lead to people with learning difficulties being screened out and denied treatment.

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Don’t Screen Us Out

 

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