Fears for kidney patients as government coronavirus advice leaves thousands in the dark

The publication of the report comes just days after the government unexpectedly advised that those in England and Wales who have been shielding indoors for over 10 weeks are now able to leave the house once a day for exercise, leaving many patients uncertain and confused.

One of the most concerning findings is that there has been confusion among kidney patients regarding advice from the UK Government regarding shielding; the report found that one in ten (13%) of the patients who were not told to shield had conditions that meant they should have been shielding (such as transplants, dialysis or late stage Chronic Kidney Disease (CKD)). Worryingly, 6% of patients had received conflicting advice about whether they should shield or not and almost one in five (18%) of those told verbally to shield received no written confirmation, leaving them unable to access centrally coordinated support (including medicine collection and supermarket delivery slots) or provide evidence to employers.

Seven out of ten patients reported disruption to their care. More than a third (35%) had surgery or appointments cancelled, and a quarter (26%) had not been able to have blood tests or check-ups. With someone being diagnosed with kidney failure almost every hour in the UK (8,000 people a year) regular monitoring of people with kidney disease is essential. This can help delay progression of the disease and potentially the need for dialysis or transplant. Many kidney patients in the moderate to advanced stages of kidney disease will have had monitoring appointments cancelled during the pandemic. There are serious implications of failing to spot major progression of kidney disease to both the individual and NHS services.

Fiona Loud, Policy Director at Kidney Care UK, said: “We hear from kidney patients every single day who are anxious, confused and scared about Coronavirus. For many they are concerned that a lack of information and support from the government means they are ‘out of sight and out of mind’. The Government must set out an evidenced plan for the future, which reassures kidney patients that they have not been forgotten, assures them that healthcare services are safe, and gives those who need to continue to shield as lockdown eases for the rest of the population hope of a way back to some kind of normality over time.”

Three million people in the UK have moderate to advanced CKD, placing them at greater risk from infection with COVID-19, with the risk increasing as the severity of CKD increases. About 70,000 people with CKD are in the extremely vulnerable shielding group including those with transplants, those on dialysis and those with specific types of kidney disease requiring immunosuppressants. People on dialysis are at particular risk as they are in a unique position compared to most; they must follow shielding advice and yet 25,000 of these people must also go to hospital for their life-maintaining treatment three times a week.

Ms Loud added: “We greatly appreciate the care the NHS has given to kidney patients during the pandemic, but it is essential that the Government, NHS and other key organisations such as supermarkets learn from the experience of the first pandemic wave, to improve resilience and communications now, whether or not there is a second wave.”

Read the report in full