This is the story of how patients with kidney failure requiring dialysis three times a week, have had their independence and confidence restored. The shared care programme aims to reverse a trend of declining patients' independence in dialysis and improve patients access to shared haemodialysis care.
62 year old Stephen is a businessman who travelled frequently to international destinations as part of his work. He was diagnosed with kidney failure several years ago and without dialysis would not have survived.
Patients with kidney failure describe what they call a "production line" experience during their 3 times weekly hospital dialysis. They don't feel actively engaged with their own care because nurses do everything for them. Yet research has proven that patients with chronic conditions have better health outcomes when they ARE involved in their own care. However, not much of this research has focused on patients with kidney failure.
"It was very difficult for me to incorporate dialysis into my busy weekly routine. I have never enjoyed being a patient or a passive recipient of care – I needed my independence back"Stephen, businessman and dialysis patient
So, we went on a fact finding mission to a ground breaking dialysis centre in Jonkoping, a small provincial town in Sweden.
What we found at this unit in a small hospital was cutting edge practice which was transforming the culture of dialysis. At Jonkoping dramatic results have been achieved by giving patients control of their treatment while still working alongside healthcare professionals.
On their return from Sweden, the Yorkshire and Humber team incorporated some of the ideas used in Jonkoping to develop a programme which would emphasises shared haemodialysis care' and not 'self-care'. On the face of it that sounds simple, but a cultural change was needed to shift the responsibility of care from staff to patients. This involved training nurses how to teach them new skills, harnessing motivation and building confidence.
A bespoke competency based training programme was developed for healthcare staff.
The programme gives nurses the skills to help them teach patients, training them in motivational interviewing techniques and how to overcome barriers to Shared Haemodialysis Care. It includes interactive workshops and incorporates micro-teaching. Those who have taken part in the course - and staff who have observed it - describe the program as the kind of learning that's meaningful, engaging and fun. Because of this the content is genuinely assimilated.
A tiered approach was used to cascade the training to nursing staff - starting with the senior sisters, followed by dialysis staff. Staff who attended the course together with the shared care educators discussed their learning with other staff and between them they taught the patients.
Staff attending the 3 day training programme were asked 11 questions around shared haemodialysis care. The red line shows that most participants demonstrated significant improvement in their understanding by the end of the course. Those who had initially been cynical about the idea of shared haemodialysis care went away committed, enthused and highly motivated to make the programme work.
The dialysis treatment has been broken down into 14 key tasks. Patients learn as they go along and at their own pace, doing as little or as much as they want to. They record their progress in their competency handbook which was designed with input from patients. The tasks they learn include basic observations such as blood pressure measurement, carrying out procedures in a clean or aseptic manner, setting out the dialysis pack, lining and priming the machines and inserting dialysis needles.
We held several meetings for patients, carers and healthcare professionals to help us to explore the factors which act as barriers and enablers to increasing the uptake of shared haemodialysis care. Outcomes of the programme included being able to reassure patients and resolve challenges.
The Programme developed a series of resources and tools such as the patient handbook and the nurse training journal to help spread the idea of shared haemodialysis care to all 26 renal units in the region.
Naturally we've examined outcomes and feedback from every angle. We developed measures to document the level of patient involvement as well as staff and patient satisfaction with the changes.
We believe that shared haemodialysis care impacts on each of the six quality healthcare domains. We think it makes a big difference because it puts patients at the centre of care, enhances safety and increases equity, as it gives all patients the opportunity to take an active role in their treatment.
Now we have the National Service Specifications, which facilitate shared haemodialysis care. The principle they're based on is that if health care professionals and patients believe in shared care then they are more likely to embrace it. However, patients still have a choice about whether they want to share their dialysis care.
As you can see from these patient comments the new approach has made a huge difference to their lives.
"I was really depressed when I first started haemodialysis. However, since I've started shared care I actually look forward to coming for dialysis"by Author
"Now I have more confidence to go on holiday"by Author
"Now I understand my blood results with more confidence"by Author
"Shared care has given me my confidence back and made me feel safer about my care"by Author