Kidney Matters

ABLE and other work and projects by Neerja Jain, RGN, BSc (Hons), MSc ABLE Development Manager, Kidney Research UK.
ABLE - A Better Life through Education and empowerment Over 3 million people are affected by Chronic Kidney Disease (CKD). Kidney Research UK, the leading national charity dedicated to research that will lead to better treatment and cures for kidney disease has developed the ABLE programme which seeks to research and raise awareness of the issues among "at risk" groups. Initially the programme focussed on the Black and Minority Ethnic (BME) communities who are up to five times more likely to get kidney failure than White Caucasians. Recently the scope of the programme was broadened to encompass all those at risk and the useful lessons learned from the seven initial projects are being used to inform the future of ABLE and other CKD projects	Following this educational programme, we are delighted to report from our research focus groups that people were informing us that, as well as an increase in knowledge about CKD, some also reported making pivotal lifestyle changes in order to reduce their risk of diabetes and hypertension (the main causes of kidney failure in these communities).
	The West London ABLE project led by Dr Liz Lightstone and colleagues, has demonstrated that kidney disease in Indian Asian and African Caribbean men may deteriorate more rapidly to Established Renal Failure. Long term, the study aims to identify the reasons for this faster deterioration so Kidney Research UK has recently funded this follow on work.
The Leicester ABLE project has learnt from the South Asian community about the dearth of appropriate information on kidney disease - and importantly, what resources to provide that will be of benefit. A real concern was that there was very little knowledge about CKD even among those most at risk, such as those with diabetes (a South Asian person with diabetes is TEN times more likely to develop kidney failure compared to a white European person with diabetes!). So, the team, led by Professor John Feehally and comprised of patients and community members, developed innovative resources that were well received by all stakeholders. These included an interactive DVD in English and five South Asian languages - copies are available from our Kidney Health Information Line (KHI) on 0845 300 1499. Clips can be seen on our website: www.kidneyresearchuk.org/able.	The Birmingham African Caribbean ABLE project led by Dr Adu, Dr Rayner and Sister Pat Simoyi, has produced some innovative literature aimed at this community and the relatives of renal patients who are at greater risk of CKD. A group of six Peer Educators have also been trained and are helping to deliver the key messages at community grass roots level. We are, however, in need of further funding in order to continue this project beyond June 2008!
	The other ongoing ABLE projects include one on organ donation and examining attitudes so as to inform future public policy, based in West London and led by Dr Anthony Warrens. Another, on exploring the pathway of the patient with diabetes and how we can improve education, screening and monitoring for this most vulnerable "at risk" group. Patients may then be prevented from reaching the need for dialysis, or at least are better prepared for it.
The charity has also led on the Patient DVD Project. Aimed at informing patients about living with CKD, it was developed in partnership with British Renal Society (BRS) and working with other leading groups including the National Kidney Federation (NKF). The content was driven by patients. There are separate DVDs, one for CKD and one for living with kidney failure. These can be obtained from our KHI (Kidney Health Information line 01733 704650).
Research work that has been completed over the last year has shown... A potential way to increase iron in the body to prevent anaemia How to improve outcome, relapse and survival in patients with vasculitis Identified a new molecule present in rejecting kidney transplants Blocking a hormone can inhibit the growth of cancer cells How to promote repair to kidney cells
The charity's Patient Grants Scheme Each year we award support grants to patients affected by kidney disease who receive dialysis treatment or live with a transplant. Last year we spent nearly £120,000 on patient welfare, which included £70,000 of direct grants awards. See Information section on the website: www.kidneyresearchuk.org For more information on Patient Grants - call 01733 704658/75

	KIDNEY MATTERS
Queen Elizabeth Hospital Kidney Patients' Association