On many occasions after presenting my company to renal units we often get into further discussions surrounding the current dialysis situation in the UK and more importantly why it was that I chose to use home therapy dialysis (CAPD). I enjoy these talks immensely because at the end of the day I am a renal patient and have a very deep felt affection for the people that use dialysis and those that care for them. It seems to me throughout all my meetings, renal units up and down the country are desperately trying to modify the renal landscape into a more balanced approach that is encouraging greater use of home therapy. Nurses often tell me that they feel pressured into this desire for ‘patient choice’, which they feel can sometimes work against patients. Don’t get me wrong they and I are all for choice but feel that it would be more correct to desire ‘informed’ choice. On this I feel the general public (who then become renal patients) will always lack that necessary insight into dialysis therapies to make this happen. Dialysis is always referenced as HD in any form of media coverage (and sometime in hospitals as well!) so much so that I believe it will be very difficult to educate renal patients to a level where they have that necessary informed view to accept other dialysis therapies, something many units agree with me about. For that reason do you believe it is now time for doctors and nurses to have more of a say in the therapy their patients do? After all, they are the individuals who have the experience and knowledge in this matter. I know that it saddens these nurses when they see patients choosing hospital dialysis when they know full well a home therapy would be better for them. However, because they have to tread this fine line between informing patients and giving them choice they sometimes feel afraid to offer advice, which could be easily viewed as forcing a particular dialysis on a patient. Given this how do you see us improving patient choice as recommended in the recent dialysis manifesto by the APPKG? I know this is a very difficult subject, but it just seems to me that our renal network is under so much stress to provide constant HD access that it will be forever swimming against a tide if this issue is not addressed.
Given what I have said above are there any procedures in the UK presently focused on producing a standard pre-dialysis education programme focused on improving the uptake of (all) home therapy that allows for greater input and advice of nurses/doctors? And do you think we need one? Additionally do you believe that we may have become too reliant on HD in this country and that we may never improve our capacity problem until we address the above?
As a renal patient myself I feel connected to this problem as much as every other person involved in our renal network. I believe we may be doing ourselves an injustice if we don’t allow our renal teams to assist in dialysis choices because of the fear of repercussions, in fact I believe the repercussions will be far greater if we don’t. I’m sorry for having take up so much of your time with this long email but would really like to hear your thoughts on the matter.
Regards, John McCarthy, Managing Director, Renal Freedom
A: Dear John, thank you for your letter. Choice is a central theme of the National Service Framework (NSF) for Renal Services. The NSF makes it clear that patients should be offered a choice of renal replacement therapy that includes pre-emptive transplant listing including live donation, in-unit haemodialysis, home haemodialysis and peritoneal dialysis as well as supportive end of life care. Choice is also a subject very close to my heart. I am pleased to learn that your impression coincides with mine – the kidney care professionals are keen to get the balance of renal replacement therapies “right”.
A good choice must be informed and is a process rather than a point in time. Some years ago, we conducted a study in Manchester on an inception cohort study of people on dialysis. We thought we were offering choice – but patients told us that their view was that doctors and/or nurses were really making the choice for most of them. I believe the situation has improved over the last decade – the earlier identification that estimated glomerular level filtration reporting and inclusion of a chronic kidney disease domain in a Quality Outcomes Framework of primary care should allow a longer lead time before replacement therapy is needed. We also have some good national products such as the Kidney Research UK/British Renal Society DVDs and the information that is now available on NHS Choices.
However, I am not complacent. The report of the 2006/2007 DH sponsored Action Learning Sets on processes in the year before renal replacement therapy noted that:
- All patients should have on-going access to verbal and written information, advice and support for the management of their established renal failure. This should include preparation for dialysis, transplantation or conservative management.
- Patients should have a free choice of renal replacement modality, restricted only by individual medical limitations.
The soon to be published 2007 Renal Registry UK data however still shows unexplained variance in modality proportions between kidney units. The recently reissued NICE guidance has recommended that home haemodialysis as a modality of treatment should be offered to all appropriate patients. Full details can be found at Renal Failure – Home versus Hospital Haemodialysis
I think there is a real opportunity to improve experience and outcomes if we can get things right in the “Golden Year” – the year before renal replacement therapy is necessary (or before conservative kidney care begins). We are working to provide support for the service and people with kidney disease during this stage. NHS Kidney Care is sponsoring a national project on care plans and care planning the outputs of which should be available to the kidney community from World Kidney Day 2009.