‘Many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that’
Shaun LinternHealth Correspondent @ShaunLintern
Wednesday 25 March 2020
Emergency guidance to help doctors decide who should get critical care during the coronavirus outbreak is being urgently re-written after a U-turn by a national health watchdog over fears it could mean disabled people are denied treatment.
The National Institute for Health and Care Excellence (NICE) had been threatened with legal action for telling doctors they should assess patients with learning disabilities, autism and other limiting conditions as scoring high for frailty.
But, following complaints from families and campaigners, NICE has said it will reissue its guidance.
NICE’s national guidance for the NHS, published on Friday, advised doctors on how to choose who gets life-saving intensive care treatment such as ventilation in the event of critical care services being overwhelmed during a surge of Covid-19 patients.
It included a frailty score that told hospitals to “assess all adults for frailty, irrespective of age and Covid-19 status” using a nine-point frailty scoring system with people “completely dependent for personal care, from whatever cause” scoring seven.
Anyone scoring higher than five was said to have uncertainty around the benefits of critical care.
Despite NICE accepting the guidance is wrong, at the time of publishing, it had yet to remove the incorrect documents from its website.
Peter Todd partner at Hodge, Jones and Allen solicitors, wrote to NICE on Tuesday demanding the guidance was withdrawn and that it made clear the original documents were wrong.
He told The Independent: “The guidance is still published on the NICE website and says that clinicians should comply with it. It would be better if they took it down and amended it before it was published again.
“You could be totally forgiven as a doctor for thinking this was still a valid policy, but they have already accepted they have made a major blunder.”
He explained that, as the guidance is currently worded, it meant young people with disabilities, autism or other mental health problems “have been classed as not to be offered critical care if required and that seems to be discriminatory and I don’t see how it can be justified. I think it is also a breach of the Human Rights Act.
“If they made clear doctors should not apply this frailty score to anyone who has autism or learning disabilities that would help, but it needs to be emblazoned on the policy. What I asked them to do was to unpublish the guidance and put a notice up to say it had been withdrawn and to consult first and republish it properly amended.”
Julie Newcombe, co-founder of Rightful Lives and whose son Jamie has autism said: “The original guidance was quite simply frightening. For a long time now, many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that.
“The hastily put together clarification is welcome, but I still wonder how that will translate on the ground given that attitudes in some areas are so entrenched.”
Edel Harris, chief executive of the learning disability charity Mencap, also criticised the guidance saying: “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.”
He added it was vital NICE made clear patients should not be assessed for critical care based on their cognitive abilities.
A spokesperson for NICE told The Independent it was very aware of the concerns.
They added: “Our new Covid-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during this very difficult period of intense pressure.
“The guideline says that on admission to hospital, all adults should be assessed for frailty, and that other comorbidities 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 Score 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.”