PSC Support began in 1995
PSC Support was set up in 1995 by Deborah Martin, whose husband tragically passed away from PSC. Because there was no support available for PSC patients at that time, she set up the support group with help from Dr Roger Chapman, with the key purpose of finding ‘help in each other’. The very first issue of ‘PSC News’ was issued in April 1995.
Ivor Sweigler and Susan Sutton took over the running of the group in February 2001 when Deborah retired. Two years later, Susan Sutton retired, leaving Ivor to take the helm with a number of other volunteers. The newsletter was issued 2-3 times a year and the charity held a small meeting each year in Oxford.
2006 saw PSC Support become a registered charity (1115615) with 300 members. In 2009, the UK-PSC Study was born, thanks to the hard work of Dr Roger Chapman, Dr Simon Rushbrook and Dr Graeme Alexander, and funding from PSC Support. PSC patients in the UK embraced this initiative and began to provide blood samples to help us better understand PSC.
2011 to 2017
The charity underwent some major changes in 2011 when Ivor passed away. Martine Walmsley, who had been volunteering with the newsletter production since 2007, stepped in and was elected as Chair of Trustees, along with two new Trustees (including Professor David Adams).
Martine worked tirelessly as a volunteer to strengthen PSC Support's relationships within the hepatology community, raise the profile of PSC and introduce a clear PSC research strategy. Work began to take greater advantage of the opportunities offered by new technologies, and fresh operational policies were introduced to comply with charity legislation, ensure medical information was correct and that fundraising income was allocated in accordance with the charity’s objectives and priorities.
PSC Support has continued to grow and now has a reach spanning over 150 countries throughout the world. Although our work is primarily focused in the UK, we recognise that global collaboration is key to improving services and clinical care for everyone, and speeding up important PSC research. To that end, PSC Support has strong connections to patient groups throughout Europe, America, Australia and New Zealand, and continues to work with other organisations that share our vision and values. Within the UK, we are active in a strong network of liver patient groups, liver transplant groups and the rare disease community.
Just before Christmas 2014, we received the news that we had all been waiting for: our application to the NIHR RDTRC for research funding was successful, and UK-PSC could start to broaden its remit and collect further biological samples from PSC patients.
PSC patients encounter many quality of life related issues, and it is important to develop treatments for PSC that improve quality of life (as well as working to find an effective treatment for PSC itself). In 2015 we embarked on an exciting project to create the first patient-led Quality of Life Measure for PSC. There is no single tool that effectively measures quality of life in PSC patients. It’s important that there is one, because if a treatment is found for PSC, and it is to be licensed and made available to patients, we need to be able to demonstrate to the regulatory authorities that the drug actually helps patients. Furthermore, if we're to improve services for people with PSC, then we need to be able to evidence what life is like with the condition. Asking the right questions, at the right time will enable that.
Clinically meaningful change in PSC: the patient perspective. In March 2016, Martine Walmsley was delighted to be asked to represent PSC patients’ perspectives on their unmet needs and clinically meaningful change to an international PSC audience which included researchers, international regulatory authorities and pharmaceutical companies. This was a huge honour and responsibility that she took seriously. The wealth of important patient opinions, descriptions and views on living with PSC and research priorities PSC Support had gathered from our patient surveys allowed us to successfully deliver our message: we are serious about progressing PSC research, PSC patients are highly motivated to progress research and there is no doubt that the unmet needs of PSC patients are wide-reaching and significant.
By 2017, it was clear that PSC Support was effective and active, and had a strong influence but had reached an inflection point. As a purely volunteer-based organisation with a handful of active volunteers, the Trustees of PSC Support recognised that whilst our income through the splendid work of our fundraisers had grown, our ability to scale our work had not and that PSC Support needed to change how it operated.
The Trustees took professional advice on transforming PSC Support into a new legal entity termed a charitable incorporated organisation (CIO) and achieved CIO status on 27th October 2017. The beginning of 2018 saw progress towards ensuring that the assets of the original charity were transferred to the CIO to continue to be used for the same charitable activities. Our operational goal to employ someone to help Martine Walmsley with our support, advocacy, education and research programme came to fruition in December 2018 when our first employee, Maxine Cowlin, started work with us as our Programme Development Officer.
None of our work is possible without the extraordinary fundraising from our members each year and the work of our small team of volunteers who give up their time and expertise to help PSC Support. We have seen expeditions to the top of Kilimanjaro, cycling across Europe, head shaving, cake sales, football matches, marathons - you name it, our members have done it. Our favourite fundraisers to date involved two young children doing indoor skydiving and a 24-hour ride-athon involving Othello, a friendly horse-riding simulator. Thank you to each and every one of our amazing fundraisers and volunteers.
In the past 24 years, our small support group has grown into a national charity working at the highest level to influence policy and research. PSC itself has gone from a disease that was considered a mystery to a disease that has several strands of research in progress and an international PSC research community. There is still so much we need to do to achieve our ultimate goal of finding an effective treatment for PSC: we are committed to achieving it so that no one has to ever face a diagnosis of an untreatable disease called PSC.