My improvement journey: renal care

A recent report by the Renal Association, commissioned by the Health Foundation, explores how to successfully implement and spread national programmes to improve renal care. Report co-author and renal consultant Martin Wilkie reflects on a decade of experience leading improvement.

My quality improvement journey started when I was appointed as Home Therapies Lead for the Yorkshire and Humber Renal Network in 2009. My brief was to increase access to home dialysis across the region, so when the Health Foundation advertised their Closing the Gap through Changing Relationships programme I saw an opportunity.

The home dialysis clinic at the Sheffield Kidney Institute had taught me that when kidney patients and their carers are supported to manage their own treatment, according to their priorities, they demonstrate independence, ambition and amazing resilience. If this was good for people who dialysed at home then why not those who received their dialysis at centres? The Renal Network provided the collaborative support, expertise and strategic thinking to prepare a bid to the Health Foundation to develop and test the concept of shared haemodialysis care. This is where people who dialyse at centres are given the choice to learn aspects of their own care.

The first step was to present the idea of ‘self-care on the dialysis unit’ to a group of patient partners, who pretty quickly but kindly corrected me – this was shared not self-care! An early lesson for me in the importance of co-production. These patients were strong and forthright individuals who became powerful allies once they got behind the work. When our patient representative put his dialysis needles on the desk at the grant interview the panel visibly paled. That grant enabled shared haemodialysis care to be tested and gain credibility through the courage and energy of patients, carers and health care professionals – demonstrating a clear and beneficial impact on patient experience across 26 dialysis units in Yorkshire and Humber. We started with rapid tests of change in one, three and five patients.

Throughout we set up collaborative meetings involving patients, their carers and health care professionals. I was not sure what to expect from these meetings – what would patients and their carers say? Some of the statements were challenging and required us to adjust our thinking. This was not about pressurising people to go home on dialysis, but giving them the opportunity to learn more and take an active part in the treatment. We learned that unless we recognised the importance of those perspectives we would continue to focus on what matters to the institution rather than to service users. By listening to those patient testimonies we began to understand how overwhelming it must feel to arrive at a dialysis unit for the first treatment and how beginning to learn some aspects of care helps to build hope.

Getting a second chance in life is so unusual – and when we were awarded a further Health Foundation grant to scale up shared haemodialysis care beyond Yorkshire and Humber, we were keen to apply the learnings from the first programme. We were determined to have a robust quantitative evaluation and to achieve this we set up the SHAREHD cohort study. I absolutely knew though that we would be lost unless supported by a strong programme management team.

The most powerful improvement tool we used by far was the collaborative. Learning events enabled contributing teams to present the progress they made, and they rose to the challenge of testing the introduction of shared haemodialysis care in their local contexts. ‘Market place’ workshops provided a bustling opportunity for show and tell. Teams brought their evidence to the sessions and amazed us with what they achieved. It was important that teams were able present their work at professional meetings and gain awards for their innovative work.

Through the SHAREHD programme, we quickly understood the importance of including real time data describing progress in our learning events. This was in the form of run charts and data from the cohort study, where excellent data analytics meant that we could update teams with their progress throughout the programme, helping to maintain engagement. However, more important than the data was the message. As we planned our learning events we were influenced by a TED talk by author Simon Sinek, in which he explains the importance of the message. Stealing shamelessly from others, we developed a cascading programme of personal message photos #whyidosharedcare, which turned out to be more important in helping to spread the programme than the data.

My third chance came when the Health Foundation supported our team to lead on a learning report to examine three scaling up programmes in renal care, including SHAREHD. This looked at how innovations tested successfully in one place were spread across disparate locations so that their impact on quality of care could be extended. Our report Kidney services – improving at scale, was a rare opportunity to spend time reflecting on what worked most effectively from the work we and others have been involved in.

My 10-year journey has enabled me to better understand the potential of quality improvement methodologies to test and scale up #whyidosharedcare. It has been a rich and wonderful collaborative learning experience of the best of human nature.

Shared Haemodialysis Care also featured in our recent report The Spread Challenge.

Martin Wilkie (@wilkiemart) is Consultant Nephrologist, Sheffield Teaching Hospital NHS Foundation Trust.