2018 National report of kidney patient experience in the UK

The national report of kidney patient experience in the UK has been published today highlighting that transport (to and from clinics for dialysis); needling (how often the renal team insert dialysis needles with as little pain as possible) and shared decision making about care remain the areas where patients still feel most improvement is needed. The Kidney Patient Reported Experience Measure (Kidney PREM) is a major initiative which aims to put kidney patients at the centre of service improvement in UK kidney care.

Read the 2018 Kidney PREM report here.

The Kidney PREM was co-designed by people living with kidney disease, academics and clinicians, and is co-ordinated by Kidney Care UK, and the UK Renal Association. It was completed by 13,770 people in the UK who live with kidney disease and responses were received from 71 adult NHS renal centres across the UK. Analysis of the results was carried out by the University of Hertfordshire.

Encouragingly, most patients continue to rate their overall experience of care highly, and the areas that scored highest centred on access to the renal team, privacy and dignity, patient information and scheduling and planning.

However, the three areas that scored the lowest (transport, needling and shared decision making) remain unchanged from the findings of the 2017 report, highlighting that continued effort needs to focus on improving patient experience in these important areas.

The renal community has been working hard over the past three years to ensure that patients are able to have their say through the Kidney PREM, and that real change is being driven by patients. While it is disappointing the results didn’t show improvement in the three lowest scoring areas, work is being done at a national and local level to improve all three.

Patients under the care of Imperial College Healthcare NHS Trust in London are already benefiting from changes made following their results of the Kidney PREM in 2017. Areas for improvement identified by patients focused on shared decision making and support. The team discussed their results and put an action plan in place which included setting up new bespoke clinics at times that work better for patients such as in the evenings and with longer appointment times; and increasing the size of their home haemodialysis team in order to support more patients to dialyse at home.

Ron Cullen, Chief Executive of the Renal Association, said: “The Renal Association is committed to working with kidney units and providing them with the means to hear and act on their patients’ views of their care. It is pleasing to see another increase in the number of completed surveys and to learn about improvements being made in response. The renal community is leading the way with an annual listening exercise of this scale, and though sometimes improvement is slower than we might perhaps like to see the main thrust of the survey is putting patients at the centre and helping develop personalised care and services. Renal unit staff are, like many in the NHS, working under enormous pressure which we recognise. The Renal Association remains committed to ensuring we continue to promote personalised care and to learn and improve services for kidney patients.”