Campaigning for kidney patients during the Covid-19 pandemic

It is hard to overestimate the impact of the Covid-19 pandemic on the health, psychological wellbeing, finances and daily lives of many people with kidney disease. Kidney Care UK played a vital role in making their voice heard by policy makers.

During the Covid-19 pandemic, people at greatest risk from the virus needed support to live, work and access healthcare safely.

It quickly became clear from reports we received from people with kidney disease that there were important gaps in support and that it was difficult to access reliable Covid-19 information addressing the specific concerns of people with kidney disease.

Campaigning for people with kidney disease: what we did together during the Covid-19 pandemic

People with kidney disease shared their stories with us throughout the pandemic. We fed these into regular meetings with Government officials and NHS leaders, enabling us to appeal for better support. We described the challenges people were facing and recommendations for improvements on issues such as lack of online food delivery slots and difficulties accessing the third dose of the Covid-19 vaccine.

We organised for people with kidney disease to meet online with Department for Housing Communities and Local Government officials to share how support and guidance could be improved and challenges they faced in following the Covid-19 guidance.

Thousands of people affected by kidney disease fed into our three national surveys, allowing us to capture the experience of people with CKD during the pandemic. We used this evidence to raise awareness, lobby and meet Government and the NHS for improvements in support. The findings of the surveys and recommendations were published in reports (Out of sight, out of mind, 2020 and Lifting lockdown, 2021) which we shared widely, including with All Party Parliamentary Group on Vulnerable Groups to Pandemics.

Many people with CKD wrote to their MPs highlighting the findings and recommendations of our Covid-19 reports. We also wrote to and met with many MPs throughout the pandemic, encouraging them to ask questions in parliament about impact of the pandemic on those most at risk and briefing MPs who spoke in key debates on the issue.

Using Government, the NHS and medical information, we published reliable and regularly updated online guidance which focused on the Covid-19 issues of most relevance to people with CKD. This was recommended by NICE and hospitals, and enhanced by our series of 11 webinars where clinicians answered questions and shared the latest information on Covid-19, vaccines and treatments.

We acted in response to concerns from people on dialysis who were asked not to eat or drink during dialysis sessions. We worked with clinical and dietitian groups to produce new guidance on how the nutritional needs of people on dialysis could be met safely, while minimising risk of transmission.

After much lobbying by Kidney Care UK and the UK Kidney Association, it was accepted that dialysis patients were clinically extremely vulnerable (CEV) to Covid-19, that they should shield and therefore access additional support and protections. The initial list of patients likely to be CEV to Covid-19 included people with a kidney transplant but not initially people on dialysis.

We worked extensively with other charities representing people most vulnerable to Covid-19, which amplified our calls for support for those at greatest risk from the virus. We led coalitions of charities on a range of pieces of work:

  • A briefing setting out five key tests of the Government’s plan for Living with Covid-19: the support required for people at high-risk. These were used extensively in lobbying and campaigning activities.
  • A series of 'Safe At Work' letters for everyone who is at highest risk from Covid-19 to use in discussion with their employers about how to keep safe at work, updated as government guidance changes. We were delighted that many people with kidney disease used it and many charities shared it with their own supporters.

We worked with a range of charities and NHS organisations on a nationwide ‘Distance Aware’ initiative which was championed by Baroness Finlay and NHS Wales. The campaign acted as a polite reminder for people to maintain respectful distancing around others when possible, and button badges were produced and made available through our website. Retailers including Asda and Harrods supported the scheme and we also worked with Twitter who recreated the symbol as an emoji.

Building on our work in 2020-2023

We do not want the lessons from pandemic about care, advice and treatments for those likely to be most vulnerable to be lost and have given evidence both to the Covid-19 Enquiry and the Scottish Covid-19 enquiry.

Fortunately, the risk of people with kidney becoming very unwell with Covid-19 is now very much lower than early in the pandemic. However, Covid-19 remains a risk and we continue to update our information, and work to support access to treatments and vaccinations.