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 contributed a comprehensive chapter to a new medical textbook for nurses and allied health professionals, ensuring that the patient perspective is integrated into clinical education.
Building Partnerships: We participated in a planning meeting for the update of national clinical guidelines for PSC.
Building Partnerships: We prepared strategic questions for an upcoming international forum titled “Putting Patients First: From Research to Treatment.”
Organisational Excellence: We updated our web details to make it less likely information from us sent by email ends up in your spam folders.
Progressing Research: We are collaborating with European partners to develop a simplified research registry for pregnancy outcomes, building the evidence base needed to improve medical guidance for women with PSC.
Progressing Research: We completed a formal submission to the Scottish Medicines Consortium to advocate for the value of a potential new treatment for PSC patients.
Progressing Research: We reviewed the participant information for a new academic clinical trial to ensure it is clear and accessible for patients.