The Shared Haemodialysis Care programme in Yorkshire and the Humber was funded in 2010 by the Health Foundation as part of its "Closing the Gap through Changing Relationships Programme" and led by a multidisciplinary team of professionals and patient partners. We also received financial support from NHS Kidney Care. Our influences included work that had been done one patient engagement in dialysis at Guys and St Thomas's, and also the experience in Jonkoping Sweden.
Our objective was to deliver a cultural change in centre based haemodialysis across the 6 main and 19 satellite dialysis centres in the region. The cultural change that we hoped for was to give dialysis patients the opportunity and necessary support to become active partners in their own care. In order to do this we developed a bespoke course for nursing staff providing training necessary to equip them to support patients in this way. As the work unfolded, we understood the domains of health that were impacted on by this initiative – prominent among these were patient centeredness, effectiveness of the health care interaction, equity of access to care, and patient safety.
Written materials were prepared and published including a competency hand book and leaflets for patients, as well as a nursing journal to be used on the course. Measures of activity and engagement were explored through several iterations and have been used to prepare run charts from participating units and have been combined into a census.
Qualitative work has evaluated patient and staff experience and provided important information regarding drivers and barriers. We have disseminated the learning through regular meetings across our region and contributions to national meetings. We have written articles for journals, regular newsletters, participated in Webex presentations and learning events are planned.
Not everything has gone to plan. We were overly ambitious regarding the numerical change we could achieve in terms of the number of patients undertaking tasks relating to their dialysis, and under ambitious regarding the impact on patients' experience that this change would have. We have not been able to conduct a health economic evaluation, and we would like to see much more robust evidence of hard outcome benefits for patients. We have concerns regarding sustainability, and despite the efforts that we have made at several levels to ensure a lasting legacy from this programme.
Ultimately, we were inspired by the enthusiasm and commitment team members including patient partners and nursing staff from across our region. Through this work we glimpsed the possibility of true partnership between patients and health care teams to improve the management of long term kidney care.
This website has been prepared in order to share materials and learning that has come out of this programme of work so that others can make use of it.