Avoid frailty score in Covid-19 guidance when assessing LD patients – Nursing Times

People with learning disabilities and conditions like cerebral palsy risk being denied life-saving treatment because of the way those with Covid-19 are being assessed for critical care, warn experts.

They have advised clinicians not to use the Clinical Frailty Scale (CFS) when assessing whether people with learning disabilities and other conditions should be admitted to critical care.

Doctors not experienced in supporting people with neuro-developmental conditions could misinterpret the new guidance

Jon Spiers

Their warning concerns new guidance from the National Institute for Health and Care Excellence (NICE), which they said could result in this group of patients being refused access to treatment.

The NICE guideline published on Sunday said that all adults should be assessed for frailty on admission to hospital using the Clinical Frailty Scale.

Under the guidance, the nine-point scale usually used in the treatment of elderly patients will be used to identify those who may or may not benefit from critical care.

However, campaigners and frailty experts said the CFS which includes looking at how much support people need to live day-to-day is not a suitable way of assessing people with learning disabilities and conditions, such as cerebral palsy.

Embracing Complexity, a coalition of leading neurodevelopmental and mental health charities, was among those to warn that the CFS could prompt hard-pressed clinicians to make snap decisions that could be a death sentence for someone who was otherwise healthy.

There is a risk that the scale does not distinguish clearly enough between those who need support with daily living as they near the end of their lives and those who need support because of neuro-developmental conditions but may otherwise be healthy, said the organisations chair Jon Spiers.

Without making this distinction, doctors who are not experienced in supporting people with neuro-developmental conditions could misinterpret the new guidance and put vulnerable people at much greater risk, he added.

The charity Mencap said it was deeply troubled by the NICE guidance, while academics and nurses took to Twitter to express their dismay.

The consequences of the blanket application of a frailty measure in these circumstances worry me greatly

Chris Hutton

Irene Tuffrey-Wijne, professor of intellectual disability and palliative care, said life or death decisions for people with learning disabilities should not be based on this scale.

Chris Hatton, an academic at the Centre for Disability Research at the University of Lancaster, also expressed deep concern.

The consequences of the blanket application of a frailty measure in these circumstances for people with learning disabilities worry me greatly, he wrote in a blog post on the new guidance.

He said it was simply not fit for purpose. The general direction of travel that stacks the deck against people with learning disabilities is reinforced and replicated throughout, he wrote.

After publication of NICEs guidance, the NHS Specialised Clinical Frailty Network was quick to make it clear it did not recommend the CFS be used for those with learning disabilities and other groups.

The CFS has not been widely validated in younger populations (below 65 years of age) or in those with learning disability, said the network.

It may not perform as well in people with stable long term disability such as cerebral palsy, whose outcomes may be very different compared to older people with progressive disability. We would advise that scale is not used in these groups.

However, it said other aspects of the guidance including discussing the risks and benefits of critical care support with patients, carers or advocates were still relevant.

We recommend that clinicians should take any decisions about care in conjunction with patients and their carers where possible

NICE statement

NICE said it was aware of the concerns of some patient groups about access to critical care and understood how difficult this feels. It said it would be updating its guidance.

The frailty scoring system is not perfect, therefore, we recommend that clinicians should take any decisions about care in conjunction with patients and their carers where possible, said the body.

We welcome the recent clarification that the CFS should not be using in certain groups, including those with learning disability and cerebral palsy, which we will reflect in an updated version of our guideline, it added.

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Avoid frailty score in Covid-19 guidance when assessing LD patients - Nursing Times