Most kidney patients rate the care they receive highly but there is room for improvement in key areas such as the insertion of needles for dialysis and involvement in decision-making, show findings from the first national survey of its kind.
More than 11,000 people completed the survey, co-ordinated by the charity Kidney Care UK and the UK Renal Registry, with responses from 56 of the 57 adult NHS renal centres across England and Wales – 231 units in all.
“This isn’t about ticking boxes, this is about real improvements based on feedback”
The results, which were analysed by the University of Hertfordshire, show that on average patients rate their overall experience of care towards the top end of a seven-point scale.
However, the findings – published in a report titled Patient Reported Experience of Kidney Care in England and Wales 2017 – also highlight the aspects of care patients are least satisfied with. Transport, needling and sharing decisions scoring poorly, with wide variations in experiences between centres.
Encouragingly the survey, which is split into 13 different themes, shows high average scores for privacy and dignity and access to the renal team.
However, the lowest average score was for shared decision-making at 5.5 out of 7.
“This is the first national kidney patient experience survey of its kind in England and Wales”
Transport, which is “known to be an issue among many renal patients who rely on hospital provision”, was also rated lower than other aspects of care at 5.6.
Meanwhile, the data also shows some kidney patients are regularly experiencing more pain than others when renal nurses insert needles for dialysis with “considerable variation in patient experience by centre”.
Patients were asked: “How often do the renal team insert your needles with as little pain as possible?”
The average score for needling was 5.8 but this varied between centres from 5 to the top score of 7, meaning needling is “always” pain-free.
Patients’ experience of communication and advice on fluid intake and diet also showed significant variation across different renal centres.
Paddy Tabor, chief executive of Kidney Care UK, said it was important the findings of the survey were now used to improve patient care.
“It’s vital that staff at renal centres throughout England and Wales now use this data to make improvements,” he said.
“This isn’t about ticking boxes, this is about real improvements based on feedback from patients on the issues that matter most,” he added.
Ron Cullen, chief executive of the Renal Registry, also said the data should be a starting point for making changes.
“This is the first national kidney patient experience survey of its kind in England and Wales and provides an invaluable opportunity for the kidney community to understand and take account of patient experience and use it as the starting point for quality improvement and change in how renal care is delivered,” he said.
The 2017 Patient Reported Experiences Measures survey saw data collected via paper and online surveys between July and August. A test run of the exercise took place in 2016 but this is the first official year with validated data.
Patients using the Newcastle Renal Unit are already benefiting from changes made following the 2016 pilot. Areas for improvement identified by patients focused on communication, patient information and support.
Changes made include developing “peer patient” training with the local Kidney Patient Association and installing a TV in the waiting area for patients and their families.