Disabled people continue to fear that they might be discriminated against when doctors decide who to treat, a national charity has warned.

Inclusion Scotland says concerns about people with long-term health problems being denied intensive care still need to be addressed “clearly, unambiguously and accessibly”.

Chief executive Dr Sally Witcher says a metric medics are advised to use to assess whether someone would benefit from more acute treatment – called the clinical frailty score –  risks confusing someone’s level of frailty with the level of support they require in daily life.

She suggests someone who is healthy but very dependent on physical support, for example to get around, could be classed as frailer than they are and be at risk of being denied treatment.  

It follows Scotland’s human rights commission and its UK counterpart both issuing warnings about potentially discriminatory one-size-fits-all medical guidance.

The Scottish Government told healthandcare.scot new guidance will be published shortly.

Inclusion Scotland launched a survey at the beginning of April to uncover the impact of covid-19 on disabled people, amid mounting concerns those with health problems could be denied live-saving treatment if covid case numbers overwhelmed NHS capacity and intensive care spaces were rationed.

The charity also said it was hearing of growing anecdotal evidence that older and disabled people were being asked to sign do not attempt resuscitation orders that had made people “extremely and understandably anxious”.

The Scottish Government’s Interim Principal Medical Officer wrote to doctors earlier this month to allay concerns – over six weeks since the survey brought concerns to light.

Dr John Mitchell said support needs and health conditions that are unrelated to a person’s chance of benefitting from medical interventions should not form part of decisions about treatment.

In the letter, which was published this week, he says a stable long-term health condition, learning disability or autism should “never” be a reason for issuing a DNR notice.

Doctors are also advised to be aware of the limitations of the Clinical Frailty Score (CFS), which is used to assess whether someone would benefit from treatment, among younger people and those with disabilities.

But Inclusion Scotland, which earlier this month released a survey detailing how hundreds of disabled Scots are being “pushed to the brink” by lockdown, says the situation is still unclear.

Dr Witcher said: “The fact remains that the CFS directly conflates extent of support needs with extent of frailty. But it is clearly possible for a disabled person to be in robust health yet very dependent on support, particularly if the environment in which they live is inaccessible.

“The limitations of CFS are acknowledged when it comes to “younger patients and those with long-term conditions or disabilities” but does that mean it should not be used for any younger patients or that it should still be used on younger patients whose conditions or disabilities are not long-term?

“Until such issues are addressed clearly, unambiguously and accessibly, this will not provide disabled people with the reassurance we urgently seek.”

A Scottish Government spokesperson said: “We are in ongoing and regular dialog with Inclusion Scotland and other stakeholders, including the Scottish Commission for Learning Disabilities, the Scottish Human Rights Commission and the Equality and Human Rights Commission.

“They continue to help us update much needed clinical guidance to support healthcare professionals with decision making throughout this covid-19 pandemic.

“They continue to be involved in an ongoing equality impact assessment of clinical guidance, which includes use of the CFS where appropriate. All of our stakeholders’ views are welcomed and will be considered. 

“Updated guidance on appropriate use of the CFS will be published as soon as the equality impact assessment process is complete.”

Dr Sally Witcher

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