Having driven up to Oxford for this event, walking up to the hospital I started having second thoughts about attending a patient centred meeting. But as I walked into the room, I was warmly greeted by Martine the organiser who also lives with the condition PSC.
Primary Sclerosing Cholangitis, PSC, is a rare autoimmune liver disease affecting 6,000 of the UK population. This is where a blockage occurs in the bile duct which carries bile, a substance which breaks up our food for digestion. As the blockage grows, bile accumulates in the liver as it is unable to travel through the duct causing the damage which leads to PSC. The condition now affects people of all ages, as young as 20 years old, both male and female across a whole range of ethnicities. Most people with PSC have Inflammatory Bowel Disease (IBD) but not all with IBD have PSC. There is currently no cure for PSC but liver transplants can improve the quality of life until its inevitable return.
Around 50 people attended the event, many of which have been diagnosed with PSC accompanied by friends and family members of sufferers. Along with two medics who were friends and family of PSC patients.
I attended simply out of interest and thought I would feel out of place. However, I was pleasantly surprised with how welcoming everyone was and grateful for interest in their condition. I was inspired by how far the community have come to increase their knowledge on how better to address their condition.
Dr Roger Chapman and Dr Kate Williamson, both leading experts in the field, gave a lecture each on the history of PSC and their areas of research. Where I thought the information would be simplified for the patients, I was surprised to sit through a full blown in-depth university style lecture.
At the end, we had a Q&A session where the patients asked equally complex questions as they were very familiar with the logistics of PSC. This really helped with seeing how to approach a GP and really keep on top of procedures they should be referred to. Doing this really helps the patient understand why and how to do what is required, as well as making the GP and specialist’s jobs easier in dealing with treatment.
I think events like this are such a great idea, not only in bringing a community together but also creating a more efficient healthcare system. Attending ones that may be unfamiliar to you can be daunting at first, but it is a great way of building your awareness not only for yourself but for others around you who may benefit from the input.
The PSC community hold a number of events throughout the country in Oxford, London and Birmingham. Please visit their website for further information should this be of interest to you.
Please note: There is also a PhD available in PSC Quality of Life Measure – more info here.