#NephMadness 2021: The year of living sadly

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Fiona Loud @FionaCLoud

Fiona Loud is the Policy Director at Kidney Care UK (@KidneyCareUK), the leading kidney patient support charity in the United Kingdom. She is a kidney transplant recipient and a fierce patient advocate.

Competitors for the COVID-19 Region

COVID-19 in Dialysis vs COVID-19 in Transplant

Glomerular Injury in COVID-19 vs Tubular Injury in COVID-19

Transplantation is the gold standard treatment for those with kidney failure. It gives us freedom to travel, work, eat more normally, and much more. People celebrate their ‘kidneyversary’ (the anniversary of their transplants) and it’s hard to overstate how important that transplant is to them.

Having gone through the physical, mental and financial hardships of kidney failure, and reclaimed a somewhat easier life, it was a big shock to be told that we are ‘clinically extremely vulnerable’ and should avoid contact with, well, everyone. As a director of the UK kidney patient support charity Kidney Care UK, I made a video about being in this together and how resilient we all are. Looking back, while we were all in this together, the pandemic has affected some far more than others. If this was a stormy ocean, some had yachts and some had dinghies. While we are not alone there has been a very challenging impact to those with transplants, and within our group the inverse care law has been proven yet again.

In the first wave we were scared of the unknown, in the latest wave we were scared of what we know. UK Renal Registry data showed how many kidney transplant patients have been infected and that 23% of those who contracted COVID have died. If you lived in a place with indoor and outdoor space and could work from home it was likely to be easier to stay away from everyone else than it if you lived in a small property in the middle of a heavily populated city.

I am very lucky to live with my husband, son and Ollie the dog, and have worked from home since March 2020. London is 20 minutes away on the train but I have not been on a train since World Kidney Day 2020, when I decided to stop going out. 10 days later the Prime Minister advised over a million clinically extremely vulnerable people (it’s now 4 million, with 70,000 being on dialysis, at CKD stage 5 or with transplants) to stop seeing anyone, not even to go out to put the dustbins out. This was called ‘shielding’ – we gave away badges to help people feel comfortable when they did have to go out.

Kidney Care UK was immediately faced with a rapid increase in demand for our services, whether for advocacy, grants or counselling, up by one third from the previous year. There was a clear hunger for coherent, timely and accurate information.

To address this we created a webpage which has been updated, sometimes daily, over the past twelve months as government guidance changed across the four nations of the UK. This COVID-19 web advice has to date had over 635,000 hits with an average dwell time of over 5 minutes. We also conducted two major COVID-19 experience surveys in May (1,211 respondents) and September 2020 (860 respondents). Patients and their families told us of their loneliness and stress, with one in four reporting worries about getting food in the first few weeks. The first ’shielding’ period lasted from March until August and people relied on friends, volunteers, government food boxes and, for those with digital access, eventually being able to get online shopping slots.

Although the shielding guidance was not a direct instruction, it was taken as such by many – who literally stayed indoors until new advice that they could go for a walk was given in June. As we live in a place with fields at the back, I did go out walking every day in the quietest lanes where we encountered very few people but saw no friends or other family until there was a relaxation of this advice in August. For 2 months, with extreme caution we saw selected friends and family. The first time I saw Emily, our beloved daughter, again, I am not ashamed to say that I wept. But as her partner is a hospital doctor we haven’t had a hug for a year. And then in September infections started to go up, and up again and by December we were being advised to shield again, with recent confirmation that this advice continues until March 31st.

What about kidney care? Through our surveys and directly, people told us about the disruption to kidney care (more than 7 out of 10 said their care was disrupted) and of the anxiety this caused. The transplant service was mainly though not completely suspended twice with living donation especially hard-hit. And many were worried about going into hospitals where we knew COVID was endemic. As for me, I had 2 kidney check ups over the year, where normally I would have had 4. I tried very hard to get blood tests locally rather than go into London, and have my results reviewed by my specialists; I don’t want to bore you with the technical difficulties. Suffice to say, I am changing my primary care doctor who told me that they had no responsibility to look after my transplant and would not pay for a simple blood test. I noted lots of other transplant units moving to the model of local blood tests and remote consultations either by phone or video call. Don’t get me wrong, face to face appointments will always have their place but this approach has to be the way forward. It’s greener and it keeps waiting rooms free for those who do need to be reviewed in person, BUT it does need to be reviewed around the person receiving care and their safety and not the convenience of the administrator or IT system.

For me, the darkest time has been the December/January period, but the best thing that’s happened is of course the coming of vaccines. With UK medical colleagues, we put in a lot of work for people with kidney disease to get access to them and also to help to answer the many questions people have. At the charity we have run 3 COVID-19 vaccination webinars so far,  By mid-February most of the clinically extremely vulnerable people in the UK with kidney disease have been offered a vaccine – this article from our staff team gives a great overview of our experiences. I could not wait to have mine on 23rd January, and am looking forward to a 2nd dose in April with a slow and cautious re-opening.

I’d like to ask everyone who reads this to think about:

  • Using every interaction with your patients to check in with how they are feeling and not just how their kidney is.
  • Getting as many of your patients vaccinated as possible.
  • Signposting them to good, understandable information and education.
  • (Re)building confidence.
  • Harnessing tech so it’s patient-centred.

And to all our healthcare teams a huge thank you as we know you have been through hell, and it’s not over… yet.

In memory of everyone who didn’t make it.

– Guest Post written by Fiona Loud @FionaCLoud


As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.


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