Today, the organisation I work for, National Voices, comes together with over 70 charities to speak about our firm commitment to human rights and equality as we move through the covid-19 crisis. Our statement responds to worries we have picked up from charity members—worries that those of us who are older, or who live with mental or physical ill health or disability, will not be seen as the individuals we are, but as simply a category of people whose access to care might be curtailed.
We are heartened that in response to so many of us taking these concerns to national decision makers, NHS England’s’ Chief Medical Officer and Chief Nursing Officer have written a letter explaining that even under the pressures experienced right now, the NHS needs to remain committed to doing the right thing by the people it is there to serve, particularly the most vulnerable. Blanket policies excluding people on the basis of disability or age can never be right. That they can also be unlawful was confirmed by a recent statement from the Care Quality Commission, the BMA and others.
Of course we understand that difficult decisions might need to be made about scarce resources and rising demand, particularly for critical care beds. And our hearts go out to the healthcare professionals who are faced with these impossible decisions—they deserve our solidarity and support. But this can’t mean that we lose sight of the humanity of every single person who would benefit from care. The only criterion that should be applied to rationing decisions is the likelihood that someone will recover and return to a good quality of life.
And quality of life cannot be interpreted as “life free of illness”—15 million people in England went into the covid pandemic with a long term condition. What makes for a good life—and a good death—can only be discovered through conversation with the person themselves, their family and carers. Person-centred care, shared and supported decision making and good care planning are now more important than ever. What we are hearing from our members at the moment is that conversations about the end of life, and what people do and don’t want, can be undermined and made impossible if they are overshadowed by concerns about scarcity of health care resource, and rationing of access.
Because good decisions will only be made on the basis of good conversations, it is paramount that people living with physical and mental ill health or disability, and the organisations working to support them are heard. These are decisions about us, and our loved ones—and they cannot be based on professional perspectives alone. Our input will ensure that decisions are grounded in real, lived experience.
And one thing this grounding also reminds us of is this: the burdens of ill health are distributed very unequally. People living with severe mental illness die decades before their time, largely of physical health problems. Too many families tell stories of their loved ones with learning disabilities being denied appropriate treatment and care. People living in poverty acquire multiple long term conditions decades before their wealthier neighbours. It is these inequalities and experiences we are taking into the Covid crisis, and they make us anxious and impatient for change. This inequality cannot be rectified in critical care, but in discussing rationing and prioritising, it is important to remember that that some of us seem to have lived towards the end of the queue for too long.
So let us use this crisis, and the hard decisions it necessitates, to confirm our commitment to human rights and equality. We must not allow a further erosion of these values and instead must work towards a future where all of us can benefit from good health and good healthcare.
Competing interests: None further declared