Nephrotic syndrome, a paradigm for integrated care approaches in Paediatric Nephrology

Embarking on my journey in PICH, I have been overwhelmed by enthusiasm about how PICH is changing the world of Paediatrics. Paediatrics is soon going to be a place of continuity of care, so much closer to what I have envisaged as a clinician and parent. I gradually realised that the majority of my tertiary care colleagues would not immediately share this enthusiasm and it would take time, advanced leadership skills and data to convince them of the potential for meaningful improvements.

As a paediatric nephrology SpR I was keen to explore the potential benefits of integrated care to renal patients. I decided to focus on nephrotic syndrome as this is a common kidney condition. Typically, patients are followed up in a tertiary centre, but when they relapse they attend their GP or local hospital.

I first reviewed the available data on renal telephone advice service. This confirmed that questions regarding nephrotic syndrome relapses were very common and that the currently available pathways of care could be improved to facilitate rapid access to expert help.

The need for communication optimisation was also raised in a paediatric nephrology network forum on ‘shared care’ that I attended. This allowed me to interact with key stakeholders and set up a small working group (comprising of a GP, a general Paediatrician, a Paediatric nephrologist and a specialist nurse) poised to tackle some of the issues identified.

Finally, aiming to also explore the families’ experience, I conducted interviews of parents in order to collect important data that will inform our working group’s priorities.

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