Living with Covid – and now what?

It is two years since the first Covid-19 lockdown was announced and shielding was brought in for those of us with kidney disease who were most vulnerable to a Covid-19 infection.

We should acknowledge that this has been an exceptionally challenging time. I remember reflecting in March 2020 that if there’s one thing that people with kidney disease are good at, it is being strong. I don’t mean physically strong, I mean that we have had to go through the hardest of times with kidney failure and somehow live with it.

In sorrow, we acknowledge that in the last two years we lost our charity chair, Professor Donal O’Donoghue, and our Engagement and Inclusion Lead, Amjid Ali, to Covid-19.

Likewise we should take a moment to remember all those with kidney disease and their families as well as our healthcare professionals who have died during this time. Every single life lost to Covid-19 has been and continues to be a tragedy, and when I look at data I know every single one of those numbers represents a person, and a grieving family, a life, dreams and plans all lost to this cruel disease.

Kidney patients and Covid-19: the figures and the future

The UK Renal Registry tells us the story how many of you have had Covid (figures up to 16 February 2022) which really shows the impact on those of you on dialysis, who could not fully shield.

We should however remember that the vast majority of people with kidney disease who have caught Covid have recovered well. Turning it around the other way, this data also shows that many of you did not have Covid-19. And we are now in a much better place to be protected and treated, although it is by no means perfect.

We have reasons to be hopeful and lessons to be learned.

The arrival of the Covid-19 vaccinations gave us great hope at the end of 2020, and the significance of the first person to receive an Astra Zeneca vaccine in the UK being Brian Pinker, a person on dialysis, was not lost on us. The rollout of the first two doses to those on dialysis and with transplants went well.

We learned that, while they do provide protection, vaccines did not work as well for us as for the general population and so further doses were needed and the communications, IT and delivery of the next doses was not done as well as it should have been.

Keeping you informed throughout the pandemic

After updating our website at least 250 times, running nine Covid-19 Question Time webinars and three experience surveys, plus many ‘engagements’ with policy makers (some much more productive than others), it is very clear that communication should have been far better throughout the pandemic. Clear, understandable information is paramount and that is a message we will continue to repeat.

Covid-19 is still very much around and with new variants and uncertainty it’s not easy, but the new Covid antiviral and antibody treatments are most welcome.

Recently we were both encouraged by the approval of Evusheld, a long acting antibody treatment against Covid-19 to be given as a protection, though discouraged by the fact that it is not yet available in the UK.

If there are any lessons to share about living in a pandemic, the first would be the importance of communications – direct and targeted at people affected by kidney disease.

A clear communications strategy would mean that new advice would be easier to link to appropriate employment, research and tests guidance. It would also foster public understanding and help us feel less forgotten. Taken together with other groups at highest risk of Covid-19, 1.3 million of us are clinically extremely vulnerable in the UK.

The second lesson would be to acknowledge that bad admin has let us down.

Whether people affected by kidney disease were trying to receive third, fourth or subsequent vaccinations or antiviral or antibody treatments (especially at the weekend), in some places the processes did not work well. This caused unnecessary anxiety and meant that some people have not had all the vaccinations available to them or have missed out on antibody treatments.

Thanks to all of you for the support, the questions and the involvement. By telling us your stories we can speak up more strongly and at Kidney Care UK we are always here to help with free advice, counselling, information and financial grants and support.

Find the latest news and information about Covid-19 for kidney patients on our Coronavirus guidance page.