**Update see below
On the 20th March the UK’s National Institute for Health and Care Excellence (NICE) issued rapid guidance for health and care practitioners, health and care staff who are involved in planning and delivering services, and health service commissioners.
“The recommendations bring together: existing national and international guidance and policies, advice from specialists working in the NHS from across the UK. These include people with expertise and experience of treating patients for the specific health conditions covered by the guidance during the current COVID-19 pandemic.”
We have grave concerns that the tool being used to assess “all adults for frailty, irrespective of age” could lead to those with neurodevelopmental conditions, such as Down’s syndrome, not having the access to critical care that they should.
We are deeply indebted to the clinical staff at the frontline at this stressful time and the authorities must ensure that guidelines supporting clinical decision making helps them to be able to draw the right distinction between those who need daily support for activities of daily living but are in essence healthy enough to be treated and those with cognitive impairment as a part of dementia or other end-of-life conditions.
Healthcare professionals with no experience in neurodevelopmental conditions could misinterpret the new guidance and put people with learning disabilities or other neurodevelopmental conditions at much greater risk.
The tool, the Clinical Frailty Scale (below), is a clinically oriented frailty scale that was created based on the Canadian Study of Health and Aging Frailty Index. It has been used to classify ‘frailty’ and includes dependance, physical AND cognitive impairment. The use of the CFS has been studied as a tool to determine which older adults have the best chance of survival if taken to the the intensive care unit. It’s evidence base is largely with the elderly population.
This scale has not, to our knowledge, been validated to be a useful clinical tool in the adult LD/ND population for survivability of critical care.
These guidelines must be urgently reviewed in consultation with specialists in neurodevelopmental disabilities.
Statement from our chair Dr Elizabeth Corcoran “NICE must re-visit this guideline with respect to those who have learning disability or stable physical disabilities. These are not conditions that adequately fit the design of purpose of this Frailty Scale. We have no evidence to show that it will do what they are suggesting it will do, predict who will most benefit from critical care.”
Statement from our Embracing Complexity Coalition chair:
Update 23/3/20 19:42 On Twitter NICE have responded the many comments from all corners of the disability community:
“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 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 and cerebral palsy (scfn.org.uk/clinical-frail), which we will reflect in an updated version of our guideline. “
They have included this paragraph on the CFS page:
“Please note: **The CFS has not been widely validated in younger populations (below 65 years of age), or in those with learning disability. It 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.”
We would like to ensure doctors who have already see this guidance or who may not ‘click through’ are fully up to date with the latest guidance. We thank the NICE for responding to our concerns and urge them to consult with experts in disability with the NHS, even given then time pressures.