More than 3 million people are affected by chronic kidney disease in the UK, with 2 per cent of the NHS budget spent on treatment. Kidney Research UK has developed a programme to help those affected through research and awareness-raising. Neerja Jain explains

Kidney Research UK's "better life through education and empowerment" programme was set up to raise awareness about kidney disease and help prevent or slow its progression.

It initially focused on black and minority ethnic communities, who are up to five times more likely to get kidney failure than white people. The programme has since been expanded to encompass all those at risk.

The programme's first projects have yielded some interesting results and patient education resources.

Leicester project

The Leicester project has revealed the lack of appropriate information on kidney disease - and importantly, what sort of resources are needed.

Before the project, there was very little knowledge about chronic kidney disease among primary care users, even among those most at risk, such as people with diabetes.

The principal research leads on the project worked with patients and the community to develop a set of resources, including:

  • an interactive DVD in five South Asian languages and English focusing on preventing kidney disease by tackling the early risk factors and managing chronic diseases in primary care;

  • a multilingual leaflet highlighting risk factors and their management;

  • peer educators, lay members of the public, were trained to deliver kidney health promotion in the appropriate language and cultural context of the community, reaching out to over 4,000 people;

  • an extensive media campaign, including BBC Radio 4, ITN news, BBC local news and BBC Asian network and language papers.

West London project

The West London project has demonstrated that kidney disease in Indian Asian and African Caribbean men may deteriorate more rapidly to established renal failure requiring expensive and life-limiting dialysis treatment. Long-term, the study aims to identify the reasons for this faster deterioration and the charity has funded this longitudinal study.

Birmingham African Caribbean project

The Birmingham African Caribbean project has produced some innovative literature aimed at this community and the relatives of renal patients, who are at greater risk of chronic kidney disease. Six peer educators have also been trained to deliver key messages to people in the community.

Research grants

Kidney Research UK's work with the better life through education and empowerment programme has helped to facilitate grants totalling£1.2m from the Health Foundation and Edith Murphy Foundation.

The charity's pilot screening programme based on the kidney early evaluation programme in the US is a natural progression of the better life programme. The screening programme is due to begin soon in primary care, community and hospital settings.

The charity has also been at the forefront of the patient DVD project in partnership with the British Renal Society and pharmaceutical industry partners. Following the successful launch of module one early last year, module two has now also been released.

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