Friday, 13 July 2007

Q & A : The Right to Choose

Q: The right to choose (130707)As a kidney patient, I am concerned about my right to choose. I understand that it should be my choice what type of dialysis I receive, where I receive it and when I receive it. It should also be my choice to go somewhere else in the UK on holiday. Will I be allowed this choice? Most important of all, will I be allowed to choose whether I put my name on the National Transplant list?

A: Choice is one of the central underpinning principles of the NHS. People with kidney conditions are entitled to choice as much as people with any other medical condition and this is a central theme of the Renal NSF.I know that sometimes people don't feel they have permission to make choices or ask for certain things. That's a culture that most kidney units are keen to change. Many people like to get the views and advice of their loved ones as well. The kidney unit staff should be able to explain the situation to your family and friends if you wish. Except for a few people where clinical circumstances close off certain options, choice of dialysis mode, for example, should be based on your views on which option will fit in best with your life. This is your choice and your team of doctors and nurses are there as a resource to share their knowledge so you can make an informed choice. Where and when you dialyse is more difficult. Peritoneal dialysis gives people almost total freedom. Home haemodialysis fixes the place but time and frequency are largely for the individual to determine.The options for those opting for, or only suitable for, hospital or satellite based haemodialysis are clearly more restricted. Most units run 2 or 3 shifts and very few units have the spare capacity to be able to offer much flexibility. To pretend that someone on hospital based dialysis could choose to dialyse on, say, Monday evening, Thursday afternoon and Saturday morning one week, and then a different pattern the next would be foolish. Tailoring dialysis around a busy and changing work schedule is very challenging, especially as spare capacity is in very short supply in most units. You should still, however, discuss what you want with the dialysis team. The dialysis unit is there to provide dialysis for thos who need it - not the other way round. Your responsibilities include giving good notice of a request to change a shift when you can - such a request should be met with respect and consideration. A mutually respectful relationship, a partnership if you like, is part of high quality care.Given how little spare capacity there is, the ability to dialyse away from one's base unit for work, holiday or family occasions is severely restricted. We have seen a large growth in the number of dialysis units since the NSF was published, but given the constant increase in the number of people needing dialysis, that hasn't created much spare capacity. I would like to see a system where resources followed the patient, encouraging units to release any spare capacity for visitors from other units, and that might come to pass in a few years' time when Payment by Results is introduced into renal services. I appreciate how frustrating it is for people when they can travel anywhere else in Europe and receive treatment almost as a matter of routine, but find it difficult to visit family and friends in a different part of the UK. There isn't a magic wand to wave at this problem and all I can say is that I appreciate the difficulties this causes and am looking at how we can cut through them.As far as transplantation goes , it is your right to ask for transplantation to be considered, and even before most people ask, the CKD team should be exploring this option. Tests that are needed to assess suitability should be performed in a timely fashion and once the surgeon has discussed the risks with you and you are both prepared to accept them, transplant listing is your choice. I recommend that all suitable patients are transplant listed 6 months before dialysis is likely to be needed. If live donation is a possibility, it should be done, where possible, before the dialysis is required. For the unfortunate 30% who arrive unprepared and needing urgent diaylysis, transplant listing should be fast-tracked.