Listening to the patient voice

The Kidney Alliance conducted a UK-wide survey of patients with known kidney disease. On the National Kidney Federation website, December 2008-March 2009 (www.kidney.org.uk/surveys/)

Survey Highlights

  • 50% of people with kidney disease said they had no previous symptoms.
  • Only 50% o f the people with symptoms were checked for kidney disease by their GP, and nearly a third of them had to ask for tests.
  • 50% of people at high risk and with symptoms were unaware they might have kidney disease.
  • 50% of people with advanced kidney disease had been aware they were in a high-risk group but had not felt empowered to ask their GP for tests.
  • 50% of those checked by their GP for kidney disease were checked because they had high blood pressure.
  • Only 10% of the people with kidney disease had been aware they were in a high risk group and therefore asked their GP to test them for kidney disease.

Priorities

  • To educate the public on the risks that high blood pressure and vascular disease pose to the health of their kidneys , and encourage those at risk from associated conditions such as diabetes, (the single largest cause of kidney disease), those with a family history of kidney problems, or from South Asian, African or Caribbean backgrounds, to get their kidneys checked.
  • To ensure maximum local and national exposure for kidney disease and kidney care is achieved on World Kidney Day (this occurs annually on the 2 nd Thursday in March) and to spread the message that kidney disease is common, harmful and treatable. (www.worldkidneyday.co.uk)
  • To support the work of the Organ Donation Taskforce in improving transplantation rates in the UK.
  • To engage with the renal community, policy makers and the Department of Health to contribute to and monitor work on home dialysis capability and support our member groups in their initiatives to improve and increase dialysis services.
  • To work with and educate colleagues in primary care to ensure implementation of the new Chronic Kidney Disease guidelines, and increase awareness of associated conditions.

Web: www.kidneyalliance.org

Kidney Alliance Secretariat, 26 Oriental Road, Woking, Surrey, GU22 7AW

Tel: 01483 724472

Fax: 01483 727816

Email: info@kidneyalliance.org