Down Syndrome Ireland concerned about equal access to care for its members

File photo.

Down Syndrome Ireland has sought clarity from the Department of Health over new guidance to medics over fears that it is “too vague” and could lead to some people not getting access to critical care amid the Covid-19 crisis.

The Department of Health guidance on the ‘Ethical Considerations Relating to Critical Care in the context of Covid-19’ includes the prioritisation of medication and critical care, in which it states: “In cases where all patients cannot be treated, notwithstanding surge capacity, it is essential that the process of differentiating between those individuals who should and should not receive a particular intervention is conducted in a consistent manner, taking account of the local context.”

According to the guidance document: “A multi-principled approach takes into account estimates or projections of: the total number of lives saved; the total number of life years saved; and long-term functional status should patients survive; these estimates or projections may be made based on empirical data if they are available, or on sound clinical rationale.”

Down Syndrome Ireland said it has concerns that this could mean a lack of equal access to critical care and referred to another section of the guidance it which said: “Consideration of the patient’s pre-morbid health status, their will and preferences (if known), the presence of co-morbidities and their frailty status (independent of age) are all relevant in this context.”

Down Syndrome Ireland’s head of member services Nicola Hart said: “In the absence of a clear working definition or scale, frailty is a subjective term.

“We know that Down syndrome could be considered a comorbidity, and anyone requiring support for daily living can be potentially classified as frail, depending how this is measured.

When faced with more patients than ICU beds, will there be a value judgment, conscious or otherwise, that the life of a person with Down syndrome or another long-term disability is worth less than someone without?

“People with Down syndrome may need additional support, but they are still valued members of their families and communities and should not be discriminated against.”

Down Syndrome Ireland called for the Department of Health to update the document to provide people with disabilities and their families some reassurance. Ms Hart said she had already received an initial response and was awaiting more information.

She said the matter could be “easily clarified” and added: “It leaves a lot of room for interpretation”.

She said DSI was aware of a small number of cases here involving people with Down Syndrome and she said there was also a lot of fear about being able to go in and advocate on behalf of someone, because of restrictions aimed at limiting the spread of the virus, and because of a lack of detail when it came to the number of cases involving people with a disability, as opposed to an underlying condition.