'I want to dialysis at Home – but my unit is not keen saying that although I am a suitable patient they do not have the Nurses or the resource for such an experiment – neither could they afford it. I am very disappointed, particularly as I would have thought dialysing at home was cheaper for the trust. I certainly think that it would be better for me. I do not wish to name my Trust as I don’t want to rock any boats – but the decision has made me very sad.'
Dear Mr. D,
I got your question the evening Marie my wife and I were decorating our Christmas tree. We were excitedly putting the lights and trinkets that bought back memories. I told Marie about your predicament, and she got angry. I was frustrated given all the work the Kidney Community has done to promote access to home haemodialysis. There we were like millions of others preparing for the family to descend for Christmas, thinking about parents, brothers, sisters, children and even grandchildren but not really concerned about travelling for the holidays. Absolutely no thought about dietary or fluid restrictions - well we thought about food and drink but not about any restrictions. In addition, there in my inbox was your question. It did make me sad that you too were not able to have Christmas looking after yourself, dialysing when you wanted to in your own home with your family and friends.
The National Service Framework for renal services was published almost exactly 8 years ago. One of its key aims was to improve the outcomes for people on dialysis and to maximise their rehabilitation, quality of life and survival (standard 4). This standard requires that high quality clinically appropriate dialysis is designed around individual needs and preferences. Care should be responsive to individuals’ needs and personal preferences so that their choice of clinical appropriate treatment options can be delivered (standard 2). These entitlements have now been further strengthened in the NHS constitution that puts patients at the centre of the system- why else is the NHS there? In addition, the constitution claims quality is the only organising principle of the NHS. It should be but we are not there yet!
Home dialysis offers a range of benefits for suitable patients, tailoring dialysis to individual needs, avoiding transport costs and inconvenience and allowing the individual to be more in control of their own treatment, health and life. Many home haemodialysis patients find their energy levels restored and all enjoy the relaxation in fluid and diet restrictions that follow being established on home treatment. Stopping phosphate binders and needing far fewer drugs overall makes it easier to remember and take those still needed. Several recent scientific studies have also shown improvement in patient survival and a reduction in hospitalisation for those on home haemodialysis. Most kidney nurses and doctors would argue that for those who are clinically suitable for home therapy, treatment at home is the best medical choice for them. When kidney doctors have been asked, “what kind of dialysis treatment would you choose for yourself if you needed it?” the majority opted for home haemodialysis. Patient stories are the most powerful of all. Comments such as “it’s as good as being transplanted” and “it’s given me my life back” are the rule. Jonathan Hope from Guys hospital said to me recently “my life was utterly transformed - I could eat and drink what I wanted, my medications were reduced, I visited hospital less, my symptom burden improved, I had a lot more energy and finally for the first time in 15 years, I began to live my life to the full! "
Of course, not every patient is suitable for home dialysis and not all who are suitable want to take on the role. The impact on carers needs to be carefully considered and discussed. If people do not wish to dialyse at home, they should not have to. Choice means choice. To make informed choice individuals need to understand the treatment options, and their clinical, psychological and social suitability for each potential option. Shared decision-making can then take place. Shared decision-making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. The care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments. The patient communicates his/her values and relative importance he/she places on the potential benefits and harms. The patient needs time, digestible relevant information and support; the healthcare system and individual health care practitioners need systematic tools such as patient decision aids, consultation skills, particularly active listening and the detailed clinical knowledge to manage the specific and at times complex and competing challenges of their many facets of advanced kidney disease.
Your comments about quality and costs are spot on. For those that can and want to dialysis at home it offers better quality than hospital-based dialysis and its certainly less expensive. Neither is it experimental. When dialysis started in the 1970s, it was exclusively a home based therapy. Back then, patients and carers had to build the dialysis machine for each session and the technical demands were much greater. With the introduction of peritoneal dialysis and improvements in transplantation, home haemodialysis did become the poor relation. The number of home haemodialysis patients fell but over the last decade since the publication of the National Service Framework, NICE guidelines and the work of NHS Kidney Care, the proportion of people opting for and benefiting from home haemodialysis has again begun to rise. A recent change to the payment systems for trusts makes it an even more attractive option and ensures that trusts will not lose income. Therefore, costs should not be a factor in reaching a decision on what form of dialysis to receive.
My advice is “rock that boat” or get a NKF Advocacy Officer to rock it for you and others. The way you were treated is unacceptable and intolerable. The NHS is there for patients not the other way round. Recently, a colleague described the beginning of shared decision-making as the doctors getting down from their pedestals and the patient getting up from their knees. Quality can be the only organising principle of the NHS but that will only happen when we all demand a patient centred service where every clinical interaction is about adding value. Stand up and be heard- not only will it benefit you, it will also improve things for people following your example.
My PA, Anne, said “who’s unit is this anyway? They should be named and shamed!”
Published in Kidney Life Spring 2012