The National Kidney Federation

The National Kidney Federation (NKF) is a highly effective national UK charity.

Born in 1978, it is unique in several ways, it is the only UK support organisation run by kidney patients for kidney patients, with two main roles –patient support and campaigning.

The NKF provides the only National Helpline dedicated solely to renal patients, their families and carers, by providing a free-to-call service on 0800 169 09 36. The NKF is the UK’s largest producer and distributor of kidney related medical information leaflets.

The NKF set up the All Party Parliamentary Kidney Group (APPKG) made up of MPs and Lords to persuade the government to provide better treatment for patients.

The NKF also works with the Department of Health, NHS Blood and Transplant, the NHS and other professional societies to provide better treatment for patients suffering end-stage renal failure, and the estimated 3.5 million people with Chronic Kidney Disease (CKD).

The NKF set up the All Party Parliamentary Kidney Group (APPKG) made up of MPs and Lords to persuade the government to provide better treatment for patients.

Introduction

The National Kidney Federation (NKF) is pleased to publish the Two Years On report on its campaign to increase home dialysis in the context of Covid-19 in the UK, on World Kidney Day 2023. The purpose of this report is to share outcomes from the campaign in 2022 and to encourage the kidney community to take further action.

The NKF are delighted that the request to Clinical Directors of Renal services in the UK resulted in responses from 31 units. A summary of the centre-bycentre responses is included in this report. It includes many examples of good practice, and the NKF hopes that these will be helpful to everyone involved and interested in improving the provision of home dialysis in the UK. In particular, NKF encourages the Regional Renal Networks set up by NHS England to use these examples in their work. The NKF has established parallel KPA Networks in each region, and the NKF encourages all KPA chairs to consider this report and support their local hospitals in their plans to increase the provision of home dialysis.

The NKF are most grateful to the UK Renal Registry for producing analysis of the latest data, including data centre-by-centre. Overall, there has been a small decrease in the percentage of dialysis patients on home dialysis from 2020 to 2021 in the UK, from 17.7% to 17.5%. These consist of increases in Northern Ireland and Scotland and decreases in England and Wales. In this report you can see the 2020 percentages alongside the 2021 percentages so that the change can be compared. The NKF are very pleased to see increases in the provision in many centres, however, there are also many centres which have had a reduction in the percentage of the provision. The NKF fully appreciates the unprecedented challenges facing the NHS and renal departments since 2020. The NKF encourages all centres to use the information included in the report to develop robust plans so that we can reduce the large number of centres where the provision is below 20%. Also, you will find the analysis of the home dialysis provision in 2021 by ethnicity and by social class in this report. As a kidney community, we have done little work to address the long-standing inequalities in the provision and very much hope that this will be given priority by all of us.

The NKF hopes that as the work of the Renal Service Transformation Programme is concluded in 2023, the outcomes from this impressive work will be implemented by the Regional Renal Networks in England and across the UK.

The NKF has continued to develop its support to patients and carers considering options for dialysis. NKF’s national peer support service for home dialysis, consisting of patients and carers with first-hand experience of home dialysis is now well established and growing. The NKF are requesting all renal departments to promote this service locally, particularly if this has not already been done. The NKF produced seven new videos of patients and carers sharing their personal experiences of dialysis in 2022. They are available at www.kidney.org.uk/home-dialysis-films. A summary of a survey NKF conducted regarding the arrangements for meeting the cost of utility bill for dialysing at home is set out in this report.

NKF have set out the actions that will be taken in 2023, to continue this campaign in this report. The actions include seeking the support of the All-Party Parliamentary Kidney Group (APPKG) in highlighting the issues at a political level.

This report will be circulated widely, and it will be published on our website. A hard copy of the report will be sent to Chairs of all Kidney Patient Associations (KPAs) which are members of the NKF. This report will also be sent to the Clinical Directors of Renal Services in the UK, with a request to act. The 2023 report will be published on World Kidney Day in 2024.