COVID-19: critical care guide updated amid fears for people with learning disabilities
Changes made after fears raised that life or death decisions about who receives intensive care could see people with learning disabilities lose out
Guidance on critical care during the COVID-19 pandemic has been updated over fears that people with learning disabilities could be denied intensive care.
Nurses and charities said the original guidance, only just published, meant that life or death decisions over who gets an intensive care bed could be to the detriment of people with learning disabilities.
Needing help with daily living doesn't mean you can't recover from a virus
Nurse Irene Tuffrey-Wijne, chair in intellectual disability and palliative care at Kingston and St George’s, University of London, said: ‘For people with learning disabilities this is not a good measure. If people need help with daily living this does not mean they cannot recover from a virus.’
Concern centres on the Clinical Frailty Scale contained in the National Institute for Health and Care Excellence (NICE) guidance called COVID-19 Rapid Guideline: Critical Care.
Most people with learning disabilities would be assessed at point five or more on the scale, which may be appropriate for the general population but not for those with learning disabilities, said Professor Tuffrey-Wijne.
‘My mind boggles at what this means for people with learning disabilities. These are unprecedented times and there has been very quick guidance. It’s almost as if the difficulties and challenges of caring for people with learning disabilities have been magnified and the safety net of reasonable adjustments removed – whether through conscious or unconscious bias of a clinician. Specialist nurses need to know this and speak up about it.
‘NICE have now said not to use this scale for people with learning disabilities.’
People with learning disabilities could end up not getting equal access to treatment
Mencap chief executive Edel Harris said she recognised that the NHS was under extreme pressure, but the original guidance could result in people with learning disabilities not getting equal access to treatment and dying avoidably.
‘These guidelines suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently – all things that people with a learning disability often need support with – might not get intensive care treatment.
‘That’s why we urge NICE to include specific guidance on learning disability to make it clear that healthcare professionals should not judge patients on their cognitive ability when making life or death decisions.’
NICE said in a statement that in light of the concerns it had now updated its guidance: ‘NICE is very aware of the concerns of some patient groups about access to critical care, and we understand how difficult this feels. Our new COVID-19 Rapid Guideline: Critical Care was developed to support critical care teams in their management of patients during this very difficult period of intense pressure.'
‘We welcome the clarification that the Clinical Frailty Scale should not be used in certain groups'
‘The guideline says that on admission to hospital all adults should be assessed for frailty, and that other co-morbidities and underlying health conditions are also taken into account. 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.
‘We welcome the recent clarification that the Clinical Frailty Scale should not be used in certain groups, including those with learning disability or with stable long-term disabilities such as cerebral palsy, which we will reflect in an updated version of our guideline.’
The updated COVID-19 Rapid Guideline: Critical Care says that clinicians should note the limitations of using the Clinical Frailty Scale as the only assessment of frailty and that it should not be used in younger people, those with long-term disabilities, learning disabilities, autism or cerebral palsy. Individual assessments should be undertaken in these cases.
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