Professor Jones has been managing autoimmune liver diseases such as primary sclerosing cholangitis for nearly 30 years now and runs one of the largest clinical services in the world, at the Freeman Hospital in Newcastle upon Tyne in the UK. He had the good fortune to be able to build on the work of two of the true pioneers in the field, Professor Oliver James and Professor Maggie Bassendine. His great interest has always been in the way the disease impacts on the lives of patients. The symptoms and their impact on quality of life (in particular the fatigue that bedevils so many patients). The frustration that many patients feel at the challenge of getting access to any form of treatment in an enigmatic disease that is all too often under-estimated by the general medical community.

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Over the years, he has started to see more and more patients with primary sclerosing cholangitis; patients with real and ongoing problems. Two things started to become clear; things which have led ultimately to writing the book, PSC; The Definitive Guide for Patients with Primary Sclerosing Cholangitis. The first was the growing realisation that PSC treatment in practice wasn’t nearly as effective, or uniformly used, as it should have been. There was a disconnect between the perception and the reality. The second was the sense that the level of awareness in the clinical community about PSC and its impact on patients, and the accompanying tools and resources to help patients and clinicians, were much lower than was the case for PBC and AIH (the other two classical autoimmune liver diseases). This is despite the potential for PSC to be a much more problematic disease. 

One of his missions in autoimmune liver disease, working with the patient groups such as the PSC Support, the PBC PBC Foundation and LIVErNORTH who do so much to support patients, has been to help patients and their families understand the diseases and the way that they affect them better. A thing that has always surprised him was the lack of easily accessible books explaining these diseases that were aimed specifically at patients and families and that he could recommend in the clinic. After a working lifetime of talking about the disease in ways that people (hopefully) understand he always intended to write that book. His first book (“PBC; The Definitive Guide for Patients with Primary Biliary Cholangitis) was published in 2020 and the feedback he got from patients was fantastic. It suggested that the book was a real help and filled a long-standing gap. The success of this book, and his ongoing sense of the need for better information to increase awareness about AIH, led him to write the companion volume “AIH; The Definitive Guide for Patients with Autoimmune Hepatitis which was published in 2021. PSC; The Definitive Guide for Patients with Primary Sclerosing Cholangitis is the natural third volume in the series.

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When the manuscript for the PBC Definitive Guide was half-completed the world changed with the COVID-19 pandemic. Although the autoimmune liver disease patient communities did not appear to be particularly disproportionately impacted (other than when people had end-stage cirrhosis and those taking significant levels of immune-suppressive drugs), there was a more subtle consequence. The needs of the emergency clinical service meant that even the best clinical services struggled to deliver the same level of care as before to their autoimmune liver disease patients. The need for patients to be in control of their own destiny, to be able to understand and manage their disease themselves as much as possible, became clear. This made the need for books like these more pressing than ever. Every one of us hoped that by the beginning of 2022 these problems would be behind us. However, sadly they are not and there is more need than ever to help patients with autoimmune liver disease to help themselves.

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