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NHS Kidney Care launches new resources to support the carers of people with chronic kidney disease

Based on NHS Kidney Care Press Release 13 June 2011

NHS Kidney Care, the quality improvement organisation, has launched a new online video and a report aimed at addressing some of the issues and problems that face the carers of people with chronic kidney disease and in particular those on dialysis. The video and report were launched as part of Carers Week which took place from 13-19 June 2011.

The short film features carer Bud Abbott, whose wife Denny recently started having kidney dialysis at home rather than in a dialysis centre. Bud describes the journey he went through as he took on the role of Denny’s carer. He describes how they had to adjust their lives to cope with having a dialysis machine at home and how he had to be trained to know how to operate the machine and what to do if things went wrong. The film recounts the many ups and downs in a carer’s life and provides advice and guidance on what worked for them. The aim of the film is to help other carers and patients learn from the experience of Bud and Denny.

The report — Improving choice for kidney patients: the carer and patient viewpoint — complements the film by pulling together some of the emerging themes that came out of a joint NHS Kidney Care and National Kidney Federation workshop for carers and patients. These include –

  • The belief that quality of life is paramount and often just as important as quality of treatment
  • The need for a continual dialogue between patients and carers and their clinicians
  • The need for clear and comparable information to help make informed choices
  • The need to see home dialysis as the norm not the exception
  • Seeing carers as a core part of the care team
  • The importance of peer support
  • The need for better design of facilities.

The report also sets out some key points for patients and carers, service providers, commissioners and national networks to consider. Whilst the film and report relate to caring for people with chronic kidney disease, many of the issues discussed are also relevant to people with other long term conditions.

Commenting on his role as a carer of someone on home dialysis Bud Abbott says “It’s been an absolute revelation. It’s done a world of good for Denny and been a real eye opener for me. It was quite a culture shock having all the machinery in the house however it was all to a good end and Denny as a result has been feeling an awful lot better”.

Beverley Matthews, Director of NHS Kidney Care says: “Bud is just one of the six million carers in the UK who give their time and energy to provide care and support to a loved one with a chronic condition. It is important that this Carers Week, and every week, we recognise the hard work and dedication that carers provide. Self-care, care at home and home dialysis offer real benefits for kidney patients. They link closely to the vision of an NHS that is organised around patients, giving them more choice, convenience and control over their care.

“The new film and report we are launching today should help provide carers and patients as well as the health professionals who look after and support them, with some guidance on what works and how to overcome some of the challenges carers face. I urge people to watch the film, read the report and act on its recommendations.”

The film about Bud Abbott is available now on the NHS Kidney Care website at – http://www.kidneycare.nhs.uk/_Whatworks-Shortfilms.aspx.

Click here to read the report (PDF, 544kB).

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