UK-PSC Study Day
PSC Support joined PSC researchers, doctors and nurses at UK-PSC's PSC Study Day in Leeds on 25 October 2019. The aim of the day was to educate healthcare professionals about PSC, living with PSC, current best practice in managing PSC and of course, the latest PSC research.
Maxine Tapp (Programme Development Officer), Gary Taylor (Trustee) and Martine Walmsley (Chair of Trustees) participated in the day.
This was a landmark day as far as we were concerned, because, for the first time at any PSC conference, a whole morning was devoted to wellbeing and the quality of life of people with PSC. The session kicked-off with Maxine presenting the patient perspective. She emphasised the impact of the variability and unpredictability of the disease, drawing on personal stories from patients, PSC Support survey results and our recent Facebook word clouds.
Reducing the burden
Maxine talked about reducing the burden for patients through sensitive communications, accurate PSC information, adherence to clinical care guidelines, wellbeing and quality of life research and clinical trials and research.
UK-PSC Quality of Life Measure
Martine updated the meeting about the UK-PSC Quality of Life measure, progress and plans to validate it internationally on behalf of PhD student, Elena Marcus. At the same time, Elena was in San Diego presenting about the UK-PSC Quality of Life measure at an international quality of life conference! Martine talked about the importance of having a reliable, responsive and valid way to measure quality of life. She also discussed the Gilead PSC PRO which is in use in clinical trials right now.
The PSC Wellbeing Study
Veronica Ranieri presented some of the PSC Wellbeing Study findings and gave some tips to attendees on acknowledging the emotional burden of patients.
UK-PSC BSG Guidelines for the Management of PSC
Of direct relevance to people with PSC, Professor Douglas Thorburn presented the key recommendations from the UK-PSC BSG Guidelines, emphasising the need for integrated, joined-up care for patients, the need to signpost patients to support groups like PSC Support and, very importantly, the need to support participation in clinical trials where patients are eligible.
Recommendations and what to expect
Following the launch, we've listed the recommendations made in the new guidelines and what this means for your care.