Improving Liver Care for People with PSC
Improving Liver Care for People with PSC
Reaching this milestone with Medway NHS Foundation Trust becoming the 20th service in the UK to achieve IQILS accreditation is a significant development for the PSC community.
IQILS (Improving Quality in Liver Services) is a national accreditation scheme that sets high standards for liver care. For people living with a rare and complex condition like primary sclerosing cholangitis (PSC), this accreditation matters for several key reasons:
Why does IQILS accreditation matter for PSC?
IQILS accreditation ensures that a hospital has the necessary structures and expertise to provide high-quality, coordinated care for liver patients. For a rare, immune-mediated disease like PSC, which affects the bile ducts and liver, having a service that meets national standards is important.
How does this improve access to specialist care?
PSC is a complex disease that often co-exists with inflammatory bowel disease (IBD) and carries increased risks of certain cancers. Because of this, PSC care requires a multi-disciplinary team (MDT) including hepatologists, gastroenterologists, surgeons, and radiologists. IQILS confirms a service has the expertise to provide this coordinated care, ensuring patients are not managed in isolation.
Can IQILS help reduce variations in PSC care?
Access to PSC expertise in the UK can be patchy, sometimes leading to a ‘postcode lottery’ regarding how surveillance and transplant referrals are handled. By meeting national IQILS standards, accredited centres like Medway help ensure that care is consistent, equitable, and built on strong evidence. It gives patients confidence that they are receiving a high standard of care regardless of where they live.
How is the patient voice involved?
A core pillar of PSC Support is ensuring that people with PSC have a genuine say in their care. The IQILS accreditation process includes specific standards for patient experience and involvement, ensuring that services are doing the right things in the right way for the people they serve.
Turning Ambition into Action in 2026:
Our Fortnight in Focus
At PSC Support, we want a world without PSC. We work tirelessly behind the scenes to drive research and improve lives. Here is a snapshot of what we've been up to:
Building Partnerships: We worked with PSC Partners Seeking a Cure to align our efforts for Rare Disease Day, increasing our global impact for PSC patients
Empowering our Community: We confirmed expert speakers for our 2026 Information Day, ensuring our community can hear the latest medical insights directly from PSC specialists.
Empowering our Community: We met with our dedicated community moderators to ensure our online support spaces remain safe, welcoming, and helpful for everyone.
Improving Care: We progressed a major initiative to standardise PSC care across the UK, advocating for every patient to receive high-quality care.
Organisational Excellence: Our new leadership team met to ensure our resources are focused on activities that have the most impact.
Organisational Excellence: We secured charity places in the 2026 Amsterdam Marathon, expanding our international fundraising opportunities to power future research and support.
Empowering our Community: We filled all of our Great North Run places with amazing fundraisers who are committed to raising crucial funds for our small charity!
Progressing Research: We collaborated with European liver disease experts at ERN-RARE-LIVER to plan PSC-focused sessions for an upcoming international rare disease conference.