Who we are
PSC Support is governed by people affected by PSC
Martine Walmsley - Chair of Trustees
Martine was diagnosed with primary sclerosing cholangitis (PSC) in 2007 and started volunteering for PSC Support that year. She became a Trustee and Chair of the charity in 2011, and a full time volunteer in 2013.
Martine is highly driven to support researchers in the development of curative treatment for PSC, and set up the PSC Support Research Project Grants scheme. She is an active contributor in international and national steering groups to accelerate PSC research. She relishes representing PSC patients at the highest levels and making a difference where it counts.
Martine is passionate about improving care for patients. Martine was a founding member and Chair of the Liver Patients’ Transplant Consortium from 2013-2015 which brought together UK liver patient organisations and charities to improve liver transplant services and shape policies. In 2015, she became a member of the steering group for LiverQuest (now IQILS), the initiative to raise standards and quality of care in liver services. In 2017, she joined the British Liver Transplant Group steering committee.
One of Martine's priorities is to ensure all PSC patients have access to accurate information about their disease and care, and that healthcare professionals are educated about PSC. Martine has helped develop several clinical guidelines, including PSC and Abnormal Liver Blood Test Guidelines and is co-author on a number of scientific publications.
She believes strongly that patients have an important role to play in developing curative treatments and in their own clinical care.
'I want PSC Support to continually improve the provision of quality PSC information, to work with stakeholders to ensure that clinical trial designs for effective PSC treatments lead to drugs that become available to patients quickly, and to ensure that the emotional wellbeing of people with PSC and their families is recognised alongside the physical symptoms. Above all, I want to see PSC stopped in its tracks, especially for our younger patients.'
In her spare time, Martine is a volunteer boarder and puppy walker for Guide Dogs.
David Adams MD FRCP FMedSci - Medical Trustee
After initial training in hepatology in Birmingham he continued his immunology training with Dr Stephen Shaw at the Experimental Immunology Branch of the National Cancer Institute, Bethesda, USA before being appointed to the Chair of hepatology in Birmingham in 1997. He has a long-standing interest in understanding how the immune system causes liver disease and how inflammation in the gut can lead to liver disease in the form of PSC. His group have defined molecular mechanisms used by disease causing white blood cells to enter the liver from the blood.David Adams is Professor of Hepatology, Director of the NIHR Biomedical Research Unit for Liver disease at the Queen Elizabeth Hospital, Pro-Vice-Chancellor, Head of College of Medical and Dental Sciences and Dean of Medicine and Director of NIHR Birmingham Biomedical Research Centre at the Queen Elizabeth Hospital, Birmingham. His clinical interests are transplant hepatology and autoimmune liver disease including PSC. Laboratory research interests are focused on mechanisms of immune-mediated liver disease.
As a consequence of the funding from NIHR to support the Biomedical Research Unit in Liver Disease in Birmingham, they are developing new treatments for liver disease by targeting pathways involved in the recruitment of damaging effector cells or by promoting the recruitment of therapeutic cells that promote repair and resolution of inflammation.
More about David Adams
Birmingham NIHR Biomedical Research Centre
Dr Roger W Chapman BSc; MBBS; MD(Lond); FRCP;MA (Oxon) - Medical Trustee
Roger Chapman was born in South Wales and attended a Grammar school in Cardiff. He lives in Oxford and is married to a Doctor with 4 grown up children, one of whom is an intensive care doctor in Perth, Australia.
He qualified from St Bartholomew’s Hospital, University of London in 1974, and trained in liver disease, firstly as a registrar in the Liver Unit in Southampton, and then as a lecturer on the Liver Unit at the Royal Free Hospital in London, from 1976 to 1981 under the supervision of Prof Sheila Sherlock, obtaining an MD on “Iron Metabolism in Liver Disease” in 1981.
He moved to Oxford as senior registrar in 1981, becoming a consultant at the John Radcliffe Hospital in 1986. He spent an “off service year” year as a visiting scientist at the University of Washington in Seattle in 1983-4.
Whilst at the Royal Free he developed a research interest in liver disease associated with Inflammatory Bowel Disease which he has continued to this day. He has published 5 books, 76 book chapters and 255 original articles mainly in the field of autoimmune liver disease, viz primary sclerosing cholangitis (PSC), primary biliary cholangitis (PBC) and latterly IgG4 related disease.
He is a founding member (in 1992) of the International Autoimmune Hepatitis Group (IAHG) producing position papers in the field of Autoimmune Hepatitis. More recently he has been involved in the foundation of the International PSC Study Group (2009) facilitating collaboration between different international centres researching into PSC and the foundation of British Autoimmune Liver Disease study Group (2010). He is one of the authors of the current European (EASL ) guidelines for “Cholestatic liver diseases” and the first author of the recent North American (AASLD) guidelines on the “Management of Primary Sclerosing Cholangitis”.
Roger is medical advisor/consultant to Perspectum Diagnostics Ltd (not an employee).
In 2014, Roger was awarded a Fellowship of the American Association for the Study of Liver Diseases (AASLD). In 2015, he was awarded the Lifetime Achievement Award from British Association of the Study of the Liver (BASL) and an Honorary Life Membership of BASL.
Away from medicine, he enjoys watching and playing sport particularly tennis and golf, and is a regular opera goer.
James Gosney - Trustee
James was diagnosed with ulcerative colitis in 2003 and PSC in 2007, and has been largely been asymptomatic ever since (although he had his gallbladder removed in 2011 as a result of PSC).
He works for a large international insurance company as an IT Project Manager and in his spare time he likes to keep fit with spin classes and running. James organised the London to Brighton charity bike ride for PSC Support in 2018.
'As we start 2019 as a CIO charity with new trustees and employing staff for the first time it is an exciting new era for PSC Support. My hope is that we are edging closer to a treatment or cure.’
James would like to encourage more people to sign up for organ donation and to raise the visibility of this condition, especially within the medical community.
Karen Rockell - Support Trustee
Karen was originally diagnosed with Autoimmune Hepatitis (AIH) in 1999 by her local hospital. However in 2004 after being referred to Kings College Hospital her diagnosis was changed to PSC with AIH overlap, and Coeliac Disease. In 2010 she was lucky that a routine ultrasound picked up a tumour which proved to be cancer. She was listed for transplant and while waiting for her new liver Karen underwent two programmes of T.A.C.E chemotherapy to try reduce the size of the tumour. After 8 calls to Kings she received her a successful liver transplant on the 9th call. Six weeks later, she had a Spontaneous Coronary Artery Dissection (SCAD). Today she is fit and well and competes in the British Transplant Games every year and is also a Trustee of Beat SCAD.
Professionally Karen is retired and so spends her time supporting others in her situation. She is a member of the NHSBT Patient & Public Advisory Group and is a patient member of the British Liver Transplant Group’s ongoing research project to capture Patient Experience of Liver Transplantation.
In particular, Karen’s interests involve mental health and wellbeing.
Gary Taylor - Digital Trustee
Gary is Deputy Managing Director & Group Digital Director for one of the largest independent media and digital agencies in the UK, working with global brands and household names such as Nestle, Purina, Furniture Village and Admiral Insurance.
With an excellent knowledge of digital strategy and strong commercial awareness he was appointed to the Board of Trustees to bring guidance, advice and strategic direction to PSC Support across the ever-changing digital landscape.
Diagnosed with PSC and an AIH overlap in 2008, Gary underwent a liver transplant in January 2017 after just 9 weeks on the waiting list.
'Having experienced the condition from diagnosis through transplant, I wanted to share my experience of PSC with other patients to provide a level of transparency and reality; particularly in the younger age group and those with children. The work that Martine and the wider PSC Support team continuously undertake has been invaluable in helping to improve the lives of people with primary sclerosing cholangitis (PSC) through support, education, advocacy and research.'
Gary is an avid Porsche fan and also collects retro video games. He is the co-founder of Ruck.co.uk, the UK’s leading Rugby Union website, which reaches millions of rugby fans across the world each month. He lives with his wife and two children in the West Midlands.
Maxine Cowlin - Programme Development Officer
Since her liver transplant, Maxine has been extremely busy getting back into working life, volunteering for PSC Support with advocacy, fundraising, and awareness work and working as a freelance dance practitioner across Somerset. Maxine was diagnosed with PSC in 2006 at the age of 17. After 7 years of her PSC staying fairly under control, studying dance at university, working and travelling, Maxine’s condition progressed unexpectedly and significantly. She was listed for transplant in 2013 and spent 15 months on the transplant waiting list until she received her new liver.
In December 2018, Maxine was appointed as Programme Development Officer for PSC Support, becoming the charity’s first ever employee.
‘PSC Support has helped me enormously since my diagnosis in 2006. Without the charity and its commitment to supporting patients and providing up to date, quality information, my experience with PSC would have been even more challenging. I am extremely passionate about fulfilling the objectives of PSC Support and am dedicated to ensuring the charity continues to move forwards and help even more people.’
Keith Anderson - Treasurer
Keith was diagnosed with ulcerative colitis in 1974, the year he married Margaret, and PSC in 1995.
He had a liver transplant in 2003 at St James Hospital, Leeds which has given him a new life. Keith attended his first PSC Support Information Day at Oxford in 2007 and since then he has attended
many more. From his previous work in a Building Society and as his Church’s Treasurer Keith had gained experience in working with accounts and when the charity appealed for volunteers in 2011 he became its Treasurer. Since then PSC Support has grown and developed tremendously as has its finances.
His transplant has given Keith more than 15 years of a good quality of life and he is always willing to give hope, help and support to others affected by PSC and transplantation. He regards every day as a bonus and is determined to make the most of the new life which he has been given.
Keith is retired and enjoys spending time with his family and having holidays in his motorhome. As a history lover he can often be found visiting old buildings or wandering around battlefields either in the UK or abroad.