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:
Improving Care: We attended a major national clinical conference to equip general gastroenterologists and nurses with specialist knowledge, which helps ensure future work is better aligned with what people with PSC need by improving local care and pathways.
Progressing Research: Our 2024 investment into early-stage research to build necessary scientific evidence enabled Dr James Sun to secure major national funding to explore the genetic drivers of the disease. This foundational knowledge is essential for identifying potential new treatments.
Progressing Research: We supported the development of a research manuscript on nutrition in PSC, so that the findings can be effectively shared with the wider medical community. This will help us advocate for the needs of people with PSC to ensure they get the care they need at the right time.
Improving Care: We hosted a clinical consensus meeting to map out an ideal PSC care pathway, which helps ensure future PSC management is better aligned with what people with PSC need. Establishing standard protocols across the NHS is essential for eliminating regional variations in care.
Progressing Research: We contributed to the strategic planning of an international rare liver disease network, which supports progress towards better care for people with PSC. Broadening our influence ensures patient needs are integrated into wider clinical strategies.
Improving Care: We shared firsthand experiences of living with PSC at an international medical school event, which improves clinical understanding of the disease for healthcare professionals. This is important because ensuring future specialists understand the human impact of PSC helps drive patient-centered care and clinical excellence.
Progressing Research: After just over 48 hours on our Big Give Small Charity Week match funding initiative, your donations helped us get to 78% of the way to our £20,000 goal! Thank you! Can we reach 100%?