Patient Reported Experience of Kidney Care in the UK 2021

Headline findings • 12,416 people with kidney disease, from all 68 treating centres in the UK, took part in Kidney PREM this year, largely online. • Overall experience of kidney care continues to be rated highly, with many patients who provided a written comment thanking staff for their commitment and efforts. • For four in five participants, overall experience of kidney care stayed the same or was better during the last year of COVID-19. People with a transplant and those with CKD are more likely than those receiving dialysis to report a worse experience of kidney care over the last year. • Privacy and Dignity, Patient Information and Access to the Renal Team continue to be high scoring and are the most consistent regardless of treatment. • Experience of Communication between members of the renal unit team and people with kidney disease was scored far higher than communication between members of the renal team and GPs. • Patient reported experience of Sharing Decisions About Your Care is particularly low scoring, with greater variability in experience between centres and across treatment types. More than half of those on haemodialysis have not been invited to take part in tasks of haemodialysis care, or do not know if they have. • Broadly half of those receiving in-centre or in-satellite haemodialysis say that staff always Needle their fistula or graft with as little pain as possible; this remains a low scoring area with considerable range between centres. • People receiving peritoneal dialysis and home haemodialysis report improved experience of Support from the renal unit team with treatment this year, compared to those receiving in-centre haemodialysis. Support in general continues to be a low scoring theme, notably lower than in 2019. • Experience of Advice on Fluid Intake scores higher than Advice on Diet, and both are rated higher by those receiving dialysis than people with CKD or in receipt of a transplant. • People receiving peritoneal dialysis report improved experience of Tests, with results being returned more quickly; this has worsened for those with a transplant and remains relatively low for people receiving in-centre haemodialysis. Half of respondents do not always understand their test results. • Patient reported experience of Transport continues to be scored better compared to scores in 2019. As in previous years, Transport is one of the lowest scoring aspects of kidney care experience. • People with CKD report relatively poorer experiences than people on kidney replacement therapy; the median (middle) score awarded for overall experience decreased to 6.0 from 7.0 in 2020 and remains there this year