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Patient power drives better information for those living with CKD

Posted May 28 2009 12:22am 1 Comment
CKD (chronic kidney disease) is common, harmful and treatable; however, it is under-recognised and consequently, leads to late referrals and lost opportunities to improve the condition early on. Whilst dialysis and transplantation are important in the treatment of CKD, other elements, such as lifestyle changes, are also vital to the management of the disease, so its important that we get practical information out to patients to enable them to make the best choices for them about their lifestyle and treatment plans, which in turn gives people with CKD the ability to take control and manage their condition appropriately.

I have recently been involved in an initiative, led by Kidney Research UK and the British Renal Society, and supported by The Big Lottery Fund, Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc and Genzyme UK. to create 2 DVD modules which provide exactly this information and advice.

‘Living with Kidney disease’ is a unique health awareness DVD project that aims to support anyone who has been told by their doctor that they have some level of kidney damage. Participants in the production of the DVD included BRS, Kidney Research UK, the Renal Association, the British Transplantation Society and the National Kidney Federation. Importantly, the content of the DVD has been driven by patients who themselves are suffering from CKD and who can provide a first hand view of their experiences.

The first module in this series is for those individuals who have been newly diagnosed with chronic kidney disease (CKD). This programme, presented by Dr Chris Steele from ITV’s This Morning, outlines what the kidneys do and the background to CKD. Most importantly, it covers what can be done in terms of both diet and lifestyle changes to prevent further damage to the kidneys and to reduce the associated risks of stroke and heart attack.

This module was launched on World Kidney Day earlier this year which, as well as aiming to raise renal care further up the political agenda, also reached out to communities in a bid to highlight the disease to specific high-risk groups including South Asians, Black African Caribbeans, people with diabetes, people with hypertension, obese individuals, smokers, and those with a history of vascular or kidney disease.

The second DVD, presented by Fiona Loud (Chair of the Kidney Alliance and someone with kidney disease) offers further practical advice and is aimed particularly at those individuals with more advanced kidney disease, or those who are just about to start dialysis. This DVD, which was recently launched at the National Kidney Federation Conference, discusses topics such as treatment choice - something which has to fit both the patient’s medical needs and lifestyle, transplantation options and practicalities such as employment and financial issues.

The advent of widespread eGFR reporting means that in the next couple of years large numbers of people will learn for the first time that they have CKD. This DVD will be a valuable resource to help patients (and clinicians advising patients) through this difficult period. The focus of the DVD is the lengthening and improving the quality of life of people with CKD; it covers diet and lifestyle advice, as well as accurate, honest and encouraging information on monitoring disease and health.

These DVDs are unique in that the material contained in them has been written by patients and is presented in a simple and positive way. Additionally, there are options to view the DVDs with subtitles in English and audio in English, Bengali, Gujarati, Urdu and Punjabi.

Have a look here to see what it looks like. Individual copies of the DVDs can be ordered on line at www.kidneyresearchuk.org/dvdproject. For bulk orders contact Kidney Research UK.

This project was supported by Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc., Genzyme UK and a grant from the Big Lottery Fund.
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