Listening to patients and carers always brings new insights. Many patients on home dialysis are real experts and can troubleshoot many of the problems they encounter often having had years of experience. Some have built up a network of patient colleagues that they can bounce ideas off, that’s one thing we should certainly encourage.
However, a sense of isolation can also often be heard in the voices and experiences of home dialysis patients. The subtle or not so subtle change of marital partnership to carer and patient relationship needs to be both borne in mind and openly discussed.
Perhaps where empowerment stops and shifting responsibility starts is when home haemodialysis patients have to ring round their local satellite units themselves to find a space should technical or other problems arise precluding them having their dialysis, for instance, over the bank holiday weekend. Supporting expert patients and for those that have them their carers is a crucial aspect of dialysis at home and one we, since we are the system, need to improve if all those that could benefit from home dialysis are to realise the many benefits suitable patients can enjoy such as eating spinach, tomato and mushrooms.
