Less than human?

Imagine being told that if you catch Coronavirus you will be expected, in the words of Boris' dad Stanley Johnson, to ‘take one for the team.’ There will be no critical care or ventilator available for you. Why? Because you don’t matter enough. That’s exactly what has been happening to learning disabled people living in this country across the past few weeks. And I don’t think it’s only disabled people who should be terrified by that.

Surely no right-thinking person or organisation could think it OK to withdraw healthcare from an individual simply by placing them in a ‘group’ and then downgrading the 'value' of everyone in that group? But unbelievably it was actually NICE (National Institute for Health & Care Excellence), our national body responsible for providing good health and social care guidance, who issued a statement earlier in the COVID-19 crisis which made it clear that doctors should apply a Clinical Frailty Scale (CFS) score to prioritize critical care and that high scoring ‘frailties’ included whole clusters of people with lower cognitive ability and autism (a high score reduces eligibility for care). NICE finally amended its damaging advice on 25 March 2020, but only after being threatened with legal action, and leaving a legacy of confusion in its wake, including an entrenched view that people with learning disabilities are somehow less deserving of care.

In fact, blanket approaches, such as applying ‘do not resuscitate’ orders to all people with lower cognition, are not based on medical decision-making. They are based on discrimination. We should all have a right to healthcare whether we have learning disabilities or not, whether we fall into COVID-19 vulnerability or not, whether we are from a particular ethnic group or not, whatever our sexuality, our religion, our age, and so on. If society condones taking away a person’s ability to make decisions about what happens to them (or their assessed wishes and feelings if they lack capacity) simply because they are part of an excluded ‘group’ - then who decides what those 'groups' are and which of us are in them? Damn right we should be frightened.

People with learning disabilities live happy and productive lives, they have families and friends that love them, they go to school, they work, they celebrate their birthdays, they watch TV. Just like everyone else. Sometimes they are joyful, sometimes they are sad. Sometimes they are brilliant, other times they are average. Sometimes they need a bit more support with every day life. Just like everyone else.

We are in the middle of a national emergency. Doctors, nurses and all our key workers are doing an amazing job. Resources are tight and difficult decisions do have to be made. But if society as a whole loses sight of the value of each individual human life, who then becomes less human?

(You might wish to download and carry this letter with you during the national Coronavirus crisis. It outlines the correct use of the Clinical Frailty Scale (CFS). It could save a life.)

These observations about the importance of equal access to critical care for learning disabled and differently abled children and adults also apply in relation to physically disabled people and those with other health conditions who have been unfairly identified under blanket policies as ‘less worthy’ of care.

Less than human?

This blog is my personal view. Always take independent medical and legal advice.