Previously published in Kidney Life
Q; I am now 67 and will have been on hospital haemodialysis for three years by next month. I listened to your speech at the NKF conference at http://www.nkf_/ . You talked a lot about patient-centred care but my experience is different. I don’t think I was offered all the possible dialysis options and no-one would speak to me about transplantation before I started dialysis. How can I check that the dialysis treatment I receive is the best for me and how much choice do kidney patients really have?
A: Some patients get a lot of information and support to help them make the big decisions facing them but that doesn’t occur for every patient in every unit every time. It should do. I don’t know your full clinical circumstances but you should certainly have been told about the pros and cons of transplantation in your case and had a choice between the various forms of peritoneal dialysis and home haemodialysis as well as hospital dialysis before you started replacement therapy. Many clinicians would now argue that all patients likely to progress to end-stage kidney disease should also get information about supportive care, sometimes called the no dialysis option so that they are fully aware of all the options.
Enabling informed patient choice of treatment for end-stage kidney failure is a process that takes time and explanation. All sorts of factors need to be considered, and often discussed with patient’s nearest and dearest, it is not a process that should be rushed. Clear, plain language information for patients is essential, as is the opportunity to talk to doctors, nurses, dieticians, social workers and other members of the multi-professional kidney team. The NSF makes it clear that all patients should have access to the kidney team for these reasons for at least a year before preemptive transplant or starting dialysis. Two good DVDs spring to mind as being particularly helpful resources for explaining the different treatment options and these are produced by Kidney Research UK and Guys and Saint Thomas’s Charity there are also Andy Stein’s award winning books. I would encourage everyone with CKD to request these DVDs and to dip into the parts that are relevant to them as and when they feel like. They are available from the links at the end of my article.
I know how difficult some patients find it to ask the ‘right questions’ about their treatment from their consultants, nurses and other hospital staff involved in their care. For that reason in February last year, the Department of Health’s Renal Advisory Group held a workshop on Quality and Patient Experience to discuss how to measure patient experience and ensure that the voice of patients and their own carers are incorporated into care planning, commissioning and service evaluation. Participants at the event including patients and renal staff contributed to an empowering checklist that will hopefully encourage and enable patients to review the quality of service they receive, help them to consider and ask key questions to improve the quality of care they receive.
I’m happy to say that The Renal Haemodialysis Patient Checklist produced in partnership with the National Kidney Federation (NKF) and British Renal Association (BRS) was officially launched at the European Dialysis and Transplant Nurses Association Conference in Bristol in November last year. I would like to thank Tim Statham of the National Kidney Federation, and Paul Stevens of the British Renal Society for their support in producing and distributing this patient resource.
I hope that this checklist will help you and all current and future kidney patients to understand all the treatment options, and ask questions that will improve your experience of dialysis. As Tim Statham of the National Kidney Federation has said “Providing this checklist is now available all the time, in all the renal units, then patients will pick one up, start to fill it in, and realise for themselves how good or bad the treatment they are receiving is measuring up to what is possible.” I am passionate about driving forward the choice agenda, if your unit is not offering you treatment that you feel is appropriate such as home haemodialysis or nocturnal dialysis, ask them why not!
Links and addresses:
Guys and Saint Thomas’ and Kings Modernisation Initiative website is:
http://www.modernisation-initiative.net/
DVD’s available on request from
Lisa.Silas@gstt.nhs.uk
Lisa Silas, Renal Unit, Kings College Hospital, Denmark Hill, London SE5 9RS
Eleri.wood@kingsch.nhs.uk
Eleri Wood, Kidney Unit, Guy's Hospital, Great Maze Pond, London SE1 9RT
