Thursday, 21 October 2010

Listen to the patients

The Manchester Conference on Home Dialysis goes from strength to strength. The social movement that began at this meeting three years ago is now in full flow. In 2008 there was a feeling that home dialysis’ time had come, last year individuals and teams came to learn how to set up programmes and a show of hands last week revealed what progress has been achieved. Going from none on home haemodialysis to even one or two is a quantum leap – but many units have now made that transition. Not every unit is in the same place and sustainability needs more than a handful of patients and must relay on more than one or two champions in the kidney units. A theme this year was that everyone in the dialysis team had a role in promoting home therapies, should be listening to patients and hearing what they say and challenging the system, that’s all of us, to provide each individual patient with the most appropriate form of renal replacement therapy for their needs. So that’s 100% of individuals should be given choice, not some arbitrary percentage like 15% must be on home HD.

Sandip Mitra (home dialysis lead at Manchester Royal Infirmary) had asked me to speak about the learning from the NHS Kidney Care Improving Choice Roadshows that have been hosted across the country over the last six months. The most powerful part of each of these events were the patient stories so rather than present the statistics which are impressive in themselves, Bev Matthews and the NHS Kidney Care team arranged for a panel of patients to come along to tell their stories and answer questions from the audience. Nick Maguire (a clinical psychologist and home haemodialysis patient himself) compered our session and did a great job. We also heard from partners and carers – their views, their roles, their needs. There seems to be many different approaches to carers, most common could perhaps be best summed up as inadequately considered. This is a serious oversight that became apparent to me at the first roadshow when Jean Segal interrupted her husband Stuart who had just said “it’s a doddle” with a heartfelt “well it’s not for me, who thinks about the carers?”.

Bringing patients together, to exchange stories, concerns and solutions they have discovered helps. Renal Patient View, that should be available for every kidney patient in the country, has recently launched an online home dialysis discussion forum that will provide peer support.

Watch, listen and hear some of these stories from our Roadshows at NHS Kidney Care and read the frequently asked questions in “Improving Choice: listening to patient stories”.

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