OPINION: The coronavirus shows up the weakness of our social values

The coronavirus shows up the weakness of our social values

BY JON REY-HASTIE

This article is an opinion piece from our CEO and does not necessarily reflect the position of DMD Pathfinders. However, we want to show the perspectives of our members during this crisis, and so decided to share the blog with you. If you have a blog or opinion piece you would like to share with us please get in touch.

You may have seen me recently raising concerns about guidelines released by the British Medical Association on how to prioritise treatment in the coronavirus crisis. Specifically challenging the idea that the way through this is to deny people with certain health conditions, who may respond to treatment, from accessing critical care. This follows the recent (revised) NICE guidelines with similarly worrying requirements for individual frailty assessments to determine who can access critical care.

Speaking with clinicians I know that my fears are justified, that in all likelihood if I was to contract Covid-19, because I use a ventilator I would not have access to critical care. This despite a lack of evidence that my condition would be untreatable. It could be based on an assumption that my additional health needs would make it a waste of precious resources to even try to save me. We need only to look at what is happening in care homes to see this is not just me complaining about my problem. This is real, it is happening right now to thousands of people and it is appalling.

It’s terrifying to think people with health conditions could be denied treatment based on the idea that we might take longer to recover than other people. That we could die even though our condition could be treatable. And it’s infuriating when you realise that we are ultimately paying the price for decisions that have led us to this point, from years of austerity to inexcusable delays in acting to limit the pandemic and come together with our European neighbours to combat this disaster.

I’ve grown up with my condition, Duchenne Muscular Dystrophy, which has gradually weakened my muscles and meant I require more and more help with personal care to live my daily life. At the same time, despite these functional limitations, I have gone from strength to strength in my working and personal life. I have benefited from a health system that in its constitution declares that it “provides a comprehensive service, available to all”. An idea we have now abandoned.

This pandemic has hammered home the point that as the most vulnerable in our society, we are ultimately expendable in times of crisis. That the values that underpin our way of life, that tell us, as vulnerable people, we will be protected and embody our humanity as a society, can so easily be cast aside. I have strived to give something back because I am grateful for the opportunities I have been given and I value living in a society where all of us know if we become vulnerable we will be supported. Now I see how little we matter when times are tough, I’m losing my faith in the society that I once believed in.

So where do we go from here? Is the answer just to give up? I say no, because there is still hope. While the government and medical bodies write us off and deny us treatment with new guidelines, many frontline NHS staff are working so so hard to help people, doing the best they can in a terrible situation. Many caring individuals are helping the vulnerable people they know by getting basic supplies, and helping them to shield themselves at home. Most people don’t want to lose the values that make us human, and most people don’t want their own survival to be at the expense of the most vulnerable.

There are some harsh lessons that need to be learned from this crisis. There are people at the highest levels that need to be held accountable for immense failings in dealing with the pandemic and ensuring our health system is adequately resourced. We need to establish our social values more clearly and firmly into our government and throughout our health system, so they cannot be so easily ignored.

If I’m lucky enough to make it through this crisis alive, which is looking increasingly unlikely right now, I will be fighting to ensure people are held accountable and that disabled people’s rights are strengthened, that we are recognised and valued and never again sacrificed at the altar of austerity. I will be continuing to do what I can to help the most vulnerable, because I know that the system won’t. I certainly won’t be giving up.