Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes another recipe for our Kidney Kitchen as well as articles about dialysis transport, UK Kidney week, conservative treatment, and an interview with a retiring dialysis nurse after 33 years.
We know that being a kidney patient can be tough at times and that accessing the right help at the right time isn’t always easy. We’ve spent a great deal of time over the past year talking to kidney patients on dialysis, asking them what we can do to address this. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world and what is available to them in terms of support and how to access it.
Kidney Matters has been developed to tackle this as well as the many other issues kidney patients face in day-to-day life. Along with shared patient experiences, Kidney Matters provides on how to access emotional and practical support, financial assistance through our grant schemes, advice from leading kidney specialists and tips on how to keep as well as possible by eating a healthy diet whilst on dialysis.
16 A postcard from Brighton KidneyMatters reports on UK Kidney Week, when our professionals meet to discuss the latest research in kidney disease. This year’s UK Kidney Week (UKKW19) was held by the sea in Brighton, and was the largest-ever meeting, attended by over 1300 nurses, nephrologists, dietitians, physiotherapists and other kidney health professionals. Here is our pick of the research reported during the meeting. Starting dialysis According to the latest UK Renal Registry report, nearly one in five people starts dialysis within three months of first seeing a kidney specialist. This late start increases the likelihood that people will need temporary dialysis access with a ‘line’ and spend more time in hospital. Starting late can severely affect the quality of life of individuals and families. People might cope better with peer support (one-to-one support from a trained fellow patient). So researchers at King’s College Hospital, London, looked at the feasibility of offering peer support to ‘late starters’ and whether it would be acceptable to these patients. By the end of the study, the answer to both questions was a definite ‘Yes’. People found it extremely helpful to be able to talk to someone who really understood kidney failure and its treatment, and peer supporters themselves benefited from helping their fellow patients. These findings have changed practice at King’s, where peer support is now offered routinely to late starters. Changing the dialysis menu With very few exceptions, standard in-centre haemodialysis (HD) comprises three sessions of 3.5-4 hours, but does this ‘fixed-price menu’ work for everyone? If dialysis were offered ‘à la carte’, it would be tailored to each person’s body size, age, physical activity, nutrition and remaining kidney function. It could, for example, be feasible within existing resources to offer in-centre HD every other day (i.e. seven times over two weeks). This would abolish the two-day ‘weekend’, which is known to be risky for some patients. But would it be acceptable to people used to conventional three-times-weekly HD? Of 224 patients surveyed at the Lister Hospital, Stevenage, nearly one quarter (23%) would be willing to dialyse every other day. These patients were more likely to be younger, and gain more weight with more symptoms over the two-day break. Most also agreed that they would be willing to take part in the research that will be needed before units can offer alternativeday dialysis. kidneycareuk.org
17 You can of course dialyse ‘à la carte’ if you opt for home HD, but not everyone feels able to cope with this option. While assisted automated peritoneal dialysis (APD) is available in some areas with the support of community nurses or healthcare assistants, the NHS does not currently offer staff-assisted home HD. A survey of 380 Manchester in-centre HD patients found that over half (55%) had considered home HD, but were worried about needling, their safety at home, and managing the machine’s alarms. Assisted home HD would address many of these issues, but some patients were also concerned about missing the social aspects of in-centre dialysis, while others preferred to keep treatment separate from their home lives. According to the researchers, assisted home HD could give suitable patients more independence and reduce transport costs. They are now developing a further study to assess the potential benefits and cost effectiveness of this form of treatment. Remote monitoring The kidney community has been at the forefront of using digital technology. The best-known example is PatientView, which gives us direct, online access to our test results and other information. Now renal units are introducing remote monitoring to people who dialyse at home. A team from University Hospitals Birmingham are using a remote-monitoring system for patients on APD. All 138 patients have found the system user friendly, and most (84%) are confident about early detection and resolution of problems. Most (88%) are also satisfied with remote changes to their dialysis prescription. The researchers conclude that the new system has improved patients’ safety and their health and satisfaction with their treatment, while reducing the number of hospital appointments. Image Credit: Adam Deeley Issue 6 | Summer2019