NICE Guidelines on Critical Care – Should I be worried?
By Nicole Lee, Specialist Solicitor
Parents and carer of children, young people and adults with special educational needs and disabilities will understandably have concerns about what might happen if their charge contracts COVID-19, or has some other accident or injury, and requires admission to hospital at this time.
This concern is understandable, particularly if you considered the NICE Guidelines on Critical Care in their original form. The guidelines can be found here, and in their original draft were highly controversial in the field of SEND.
This is because the guidelines require hospital to assess patients at the point of admission using the Clinical Frailty Scale (CFS). The outcome of this scale is then used in part to determine whether or not that person would receive critical care, in a scenario where there is not enough critical care resources to go around.
If the assessment suggests the person being admitted is more frail (for example, a CFS score of 5 or more), the guidance sets out that there is uncertainty regarding the likely benefit of critical care organ support, and therefore, that person may not receive critical care if the choice was between a person with a score of more than 5, and a person with a score of less than 5.
The Clinical Fragility Scale rating of 5 is – “Mildly Frail – These people often have more evident slowing, and need help in high order IADLs (finances, transportation, heavy housework, medications). Typically, mild frailty progressively impairs shopping and walking outside alone, meal preparation and housework.”
Understandably, this wording is very concerning, as this could apply to people with a range of special educational needs and disabilities, whose needs are such that they have had lifelong difficulties with the activities set out in the guidelines due to their underlying diagnoses.
The risk therefore, was that the guidelines in their initial form would weigh heavily against people with Special Educational Needs and Disabilities, purely because of those Special Educational Needs and Disabilities.
Following these concerns being raised, NICE took the comments on board, and have amended the guidelines to clearly set out in Section 1, that;
“The CFS should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism. An individualised assessment is recommended in all cases where the CFS is not appropriate."
Therefore, if you should find yourself in a situation where your child, or an adult you support with special educational needs or disabilities is admitted to hospital, the Clinical Frailty Scale (CFS) should not be used!
If the clinician attempts to complete the Clinical Fragility Scale, then you must direct them to the NICE Guidelines, and highlight that the (CFS) is not to be used in this instance, as adults with disabilities would score highly under the CFS. Instead, an individualised assessment would be required, looking at the individual presentation of that person.
In summary, the NICE Guidelines on Critical Care clearly do not apply to people with special educational needs and disabilities, and therefore in theory, do not need to be a cause for concern. However, it is vitally important that people are aware that the guidelines do not apply in cases of disability, to prevent the CFS being used where it would unfairly disadvantage them.