NICE will be updating its rapid guideline on critical care of people with suspected and confirmed COVID-19 after criticism from Mencap and other patient groups.
The guidance says that all patients on admission to hospital, irrespective of COVID-19 status, should continue to be assessed for frailty using a recognised frailty score such as the Clinical Frailty Scale (CFS).
This prompted Mencap to say that they were 'deeply troubled' that this guidance could result in patients with a learning disability not getting equal access to critical care.
The decision to update came after the Specialised Clinical Frailty Network said that the CFS has not been widely validated in younger populations (below 65 years of age), or in those with learning disability.
In a statement, the Network said: "The scale may not perform as well in people with stable long term disability such as cerebral palsy, whose outcomes might be very different compared to older people with progressive disability. We would advise that the scale is not used in these groups. However, the guidance on holistic assessment to determine the likely risks and benefits of critical care support, and seeking critical care advice where there is uncertainty, is still relevant."
Do not judge patients on their cognitive ability
In a Twitter thread, NICE said it was aware of the concerns of some patient groups about access to critical care and the guideline was developed to support critical care teams in their management of patients during this very difficult period of intense pressure.
NICE recognised that the frailty scoring system is not perfect, therefore it recommends that clinicians should take any decisions about care in conjunction with patients and their carers where possible.
It added: "We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups, including those with learning disability and cerebral palsy, which we will reflect in an updated version of our guideline."
Edel Harris, Chief Executive of the learning disability charity Mencap, said: “These are unprecedented times and our NHS is under extreme pressure. But people with a learning disability and their families are deeply troubled that the latest NICE guidance for NHS intensive care doctors could result in patients with a learning disability not getting equal access to critical care and potentially 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 guidance on COVID-19
NICE published three rapid guidelines on the care of people with suspected and confirmed COVID-19, and in patients without COVID-19 last week.
These guidelines have been developed to maximise patient safety whilst making the best use of NHS resources and protecting staff from infection.
For patients with confirmed COVID-19, the guideline says decisions about admission to critical care should be made on the basis of medical benefit, taking into account the likelihood that the person will recover to an outcome that is acceptable to them and within a period of time consistent with the diagnosis.
Other guidance published is on the delivery of systemic anticancer treatments and balancing the risk from cancer not being treated optimally versus the risk of becoming seriously ill if they contract COVID-19 because of immunosuppression.
A third guideline on dialysis says that patients with suspected COVID-19 should be assessed to see whether dialysis could be delayed until their COVID-19 status is known. I
Further guidelines will be announced in due course but are likely to include: symptom management; patients receiving radiotherapy; and patients with rheumatoid arthritis. NICE will publish new guidelines each week until the full set has been completed, based on the priorities for patients and the NHS.