How-to Guide Solo dialysis: More freedom and control for patients living alone More patients are choosing to dialyse at home. It is known to have significant clinical and psychological benefits for patients and is more cost effective for the NHS. In the majority of units it has often only been an option for patients who live with a carer. However, this is changing as an increasing number of renal units support solo dialysis for patients who live alone. A solo dialysis patient’s story Denis Cawdron has been a dialysis patient since 2005 and had been part selfdialysing (meaning he carried out some of the procedures himself) at his local unit for about six months before he began solo dialysis at home. “I had wanted to dialyse at home from the very start” said Denis, “but my local unit’s policy did not allow it. I have always been classed as ‘living along’ for the purposes of dialysis because, before her death, my wife was severely disabled.” In his role as an advocacy officer for the National Kidney Federation, Denis was at a regional renal network meeting where he heard about concerns over the rising demand for dialysis in the region and the opportunities for home dialysis to better meet this challenge. “I took the opportunity to suggest a change in policy to allow solo dialysis at my local unit and offered myself to trial it” he explained. His unit agreed and Denis and another patient at his unit began training for solo dialysis which lasted for about two months. Because he was already part selfdialysing in the unit he was able to self-needle, connect himself up and operate the machine. However, at home he would also have to prepare the machine and strip it after he finished and there would be no nursing staff on hand to offer advice or help in the event of any problems. The extra training that Denis received focused on knowing and understanding exactly how the machine works and being aware of absolutely everything that could possibly go wrong and what action to take in response. “I spent a lot of time learning about how my body responds to dialysis and understanding the early symptoms of something not being right” he said. Before beginning solo dialysis, Denis made sure he had a small group of friends and neighbours in the village where he lives who knew what he was doing. He gave them a basic understanding of how they could help so that he could call on them in the event of an emergency. They all have the code for a key safe by his back door so they can let themselves into his house if they need to. His home dialysis nurse contacted one of his closest friends to offer further advice and support if they wanted it. Denis also agreed a safe dialysis regime with his unit, making sure it was in line with guidelines and his own personal limits. “I think it helped that I was a stable patient” said Denis. “I’ve only ever had problems twice in six years and never miss sessions or leave early, so I know the team have confidence that I’ll stick to my care plan.” Denis began solo dialysis at home in February this year. In centre he would dialyse for four hours three times a week. At home he does four hours every other day. “I am careful not to take off too much fluid to avoid the risk of going flat. Now I’m dialysing at home I know I can always go onto the machine the following day to take more off if I feel I need to” he added. Benefits of solo dialysis • More frequent and longer dialysis sessions than are usually possible in centre • Patients have more time to spend with family and friends, on hobbies or work • Patients find they have more energy and are able to enjoy a more relaxed diet and drink regime. • Puts patients in control of their treatment and creates a very positive sense of freedom. Denis has only been dialysing at home for four months but already feels much fitter and happier. “Everyone I’ve seen recently has commented on how much better I 2 look. It’s not just the dialysis that is better; doing it at home cuts out all the stress of dialysing at the unit. It releases you, gives you flexibility and control, and frees you from the stress and strain of visiting a centre. It’s hard to explain to someone who doesn’t have to do it, but the stress of waiting for transport, or trying to find a parking space, or finding that a machine isn’t available when you arrive – it’s all very draining. But at home you don’t have those worries.” Because of the flexibility it has given him, Denis is able to fit his dialysis in around his busy life and job, rather than the other way round. “I can live a normal life dialysing at home” he says. Moving to solo dialysis Some patients find the move to home dialysis can leave them feeling lonely at times. Because of his role as an advocacy officer for the National Kidney Federation, Denis does not find that a problem as he is in constant contact with other renal patients. However, others that are not in his position can ask their local unit what peer support is available, make contact with the National Kidney Federation and local kidney patients associations and use the networking facilities on the Renal Patient View website to keep in touch with others going through similar experiences to share advice and support. Denis’s local unit now has three solo home dialysis patients and Denis is adamant that living alone should not be a barrier to home dialysis. "A patient who dialyses overnight is effectively alone, with their partner asleep or sleeping in another room” he says. “I just look at how much better I feel now and wish that I had been allowed to do it six years ago.” Further information: The Renal Patient View website is at: • www.renalpatientview.org More information, tools and resources to support increased choice and access to home therapies are available on the NHS Kidney Care website: • www.kidneycare.nhs.uk/_Ourworkprogrammes-PreparationImprovingchoice.aspx 3 How-to guide: Solo Dialysis Talk to your renal team They will be able to tell you what the unit's policy is on solo dialysis and whether it might be suitable for you. If you believe you could benefit from solo dialysis but find it is not available to you, talk to a National Kidney Federation advocacy officer or your local Kidney Patient's Association to see if they can help. Have your home assessed Your renal team will be able to send someone to check that you can have the necessary equipment installed at your home and to advise on any modifications you may need to make. You may need to get agreement from others, such as your landlord if you live in rented accommodation. Get trained Your unit will provide you with thorough training to make sure that you are fully capable and confident to solo dialyse and that you know what to do in the event things go wrong. Keep asking questions until you are sure you have all the knowledge you need Talk to your GP Make sure they know that you are going to be dialysing at home. They may be able to offer or direct you to additional help or support. Build a network of friends you call on if you need to Talk to friends or neighbours so they understand what you are doing and can help in an emergency. Staff from your renal unit may also want to talk to them to make sure they have a basic understanding and know what to do if needed. Ask social services to install a key safe so that your friends can let themselves into your house if they need to. Understand what support is available Find out what helplines, home supplies and other help and support are available to you, so you can call on them straight away if you need them. Use Renal Patient View It is a valuable tool for helping you stay in control and manage your care at home. It also puts you in touch with thousands of other patients going through similar experiences so you can share advice and support. Take control Home dialysis gives you great freedom but also a responsibility to take control of your care. Have a safe regime and stick to it. Know your limits whilst following guidelines 4 and your training.