From more straightforward tasks like measuring their own blood pressure to complex skills such as programming their dialysis machines, shared haemodialysis care allows patients to take charge of their own treatment.
We spoke to four healthcare professionals who have embraced the shared care ethos and brought collaborative patient care to their workplace. For every one of them, the benefits of shared care are clear: patients feel empowered, more confident, and more involved in their own care.
Implementing shared care had positive professional impacts as well, from nominations for awards to the satisfaction of seeing patients flourish. The healthcare professionals we spoke to reported a shift to a more positive atmosphere on their units after integrating shared care; they found that after an initial investment of time, empowering patients to take control of parts of their care can save time for staff.
These inspiring individuals show how implementing shared care can transform kidney care for the better.
Angela Pietrafesa is a Deputy Matron at the Oxford Kidney Unit at Churchill Hospital, part of the Oxford University Foundation Trust.
Working with the matron and the other deputy matron, I look after the service at Churchill Hospital, which is made up of eight dialysis units. I have been in this service since 2016 and I became deputy matron in 2022.
Shared care isn't new to Oxford, but the principles hadn’t been embedded in the work of the service. I felt really passionate about it and wanted to revamp it, so I decided to start again, from scratch. I started by asking the nursing team why shared care wasn't happening in Oxford, despite us knowing how valuable it could be for staff and patients.
What emerged was that staff weren't confident about what shared care was and what the benefits were. They were afraid to bring it up with patients because they were worried they wouldn't be able to answer all their questions. So I started running teaching sessions for the staff, including a bespoke session for Band 7 nurses in Oxford, which was delivered by Tania Barnes (Shared Haemodialysis Care Lead).
After the sessions, I established a monthly meeting to meet with the Band 7s to discuss challenges and what we could improve. We had to convince staff that doing shared care wasn't just yet another task. Shared care takes effort to start with, as you get people on board and teach them what to do, but in the long term, it gives you back time.
Now there's been a shift in people's mentality, and shared care is part of our routine. We don't just do shared care as part of our work – we are shared care units.
When patients come in, we explain what shared care is and what the benefits are and offer them choices about how we deliver their haemodialysis care. We always explain that shared care 'keeps them in the loop'. They will have a better understanding of what dialysis is, and it empowers them because they can decide how far they want to go with shared care tasks. They could go from what we call stage 1, which involves minimal involvement from the patient, all the way up to stage 5, which is basically doing your own treatment, such as setting up your dialysis machine, putting your needles in, starting and completing dialysis.
Ongoing dialysis treatment can be very challenging for patients, and I can't change that. But following shared care principles can improve their understanding of dialysis. It's wonderful to see patients become empowered and feel on top of their own treatment when they choose to try shared care.
Paula Debling is a Home Haemodialysis Manager at Kent and Canterbury Hospital.
My role is to support patients who want to take their dialysis home. We train the patients themselves and sometimes a partner, carer or friend, to develop the skills and knowledge to troubleshoot all aspects of dialysis management within the home setting.
Taking clinical care into your home can be a scary prospect, but we try to remove any myths, clear up the misconceptions and have a bit of laughter doing it! We take inspiration from our patients. It’s very much a shared partnership because they give us ideas and suggestions.
We've relaunched our shared care programme several times in this trust and I think that's quite common. Staff change and patients change, so you have to reinvigorate new people and new teams, and that can be quite challenging.
As everyone who works in kidney care knows, there is a huge and growing demand for dialysis, but I believe that is why collaborative ways of working with patients are so important. If healthcare staff are able to witness the benefits a shared care partnership brings to a busy unit, it might inspire them to see that shared care is the way forward.
You certainly have to invest time initially to establish shared care ways of working, but when you’ve got your patients up and running, setting their machines up, doing their blood pressure, doing their weights, it’s so good to see patients taking control of their own care. I'm now leading on our trust’s shared care programme, working with my matron. As a team we have devised a staff training programme to share all the benefits to both patients and staff that come with shared care. Our priority is engaging staff and raising awareness.
Joy Diego is a Junior Sister at the Seacroft Hospital, part of the Leeds Teaching Hospital NHS Trust. She took the Shared HD Care course in 2011.
When I first completed the course, I found it really exciting to see patients doing their own needling, using their own machines. But I was worried about how I’d make shared care part of my everyday nursing practice and introduce it to my patients, as at first it looks very challenging.
I worked in a bigger unit and at first there were only four or five patients interested in shared care and it was difficult to increase the numbers. It was when I started putting all the shared care patients in one bay that the other patients started to become curious. ‘What are they doing there?’ they’d ask me! I started to get more and more people asking me to tell them about shared care because of what they had seen happening during their regular dialysis slot.
In a year, we managed to increase the number of shared care patients on the unit from 11 to 50. We were nominated for a Nursing Times award and were selected as finalists. Although we didn’t win, we travelled to London as a team to present our work and it was very fulfilling to be recognised for what we were doing.
My advice to other units who would like to start following shared care principles is: be positive. If you allow patients to start with small things, like recording their temperature or recording their weight, it will just get bigger and bigger. Shared care changes the atmosphere on a dialysis unit – it’s a happy place. Even if they come here three times a week, our shared care patients look forward to seeing the nurses and talking to the other patients.
The happiness they get from doing something for themselves – that’s what keeps me going.
Vicki Ness is a Home Haemodialysis Specialist Nurse at James Cook University Hospital in Middlesborough.
We’ve always done shared care here. Even before we called it shared care, we used to teach patients and help them understand their dialysis treatment and how it worked.
We have shared care patients throughout the units at James Cook. Some patients come into the unit and put themselves on, putting their needles in or preparing their dialysis access line, connect their lines, do everything, while others do their blood pressure, weigh themselves, do their own observations and write it in but don’t feel comfortable doing their own needling, for example.
It's important for patients' mental health to take a little bit of power and control back. A lot of these people are very independent, then they have to start coming to hospital for dialysis treatment multiple times a week and it can feel like they've lost control over their lives. Patients want to do things for themselves and it's important to listen to that.
If we get a new patient in, I always give them a couple of sessions to settle, and then I’ll go over and I’ll talk to them about home dialysis and shared care. We’ve got our own leaflet here. They’ll have a read and let us know if they're interested or not, there’s no pressure. It’s just the norm here to talk about shared care options.
Do you know what I love? When you’ve trained a patient, spent loads of time with them, and you see them come in to unit and do all their treatment set-up themselves. And then they take themselves off and they go home and you can see that achievement.
At first they say to me, ‘I’m not doing that, I couldn’t do everything you do for myself', and then suddenly they are doing it, and they’re like, 'I can’t believe I’m doing it!’ I love empowering them and giving them back autonomy, independence and control.