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 led an international discussion on removing barriers that delay research, ensuring that drug development is built around the practical realities of living with PSC.
Building Partnerships: We joined an AMMF webinar to share specialist transplant knowledge with healthcare professionals to help ensure that clinicians are aware of evolving care options and can better support patients facing transplant and CCA.
Building Partnerships: We presented the latest the PSC Working Group's achievements at the European Reference Network meeting of liver experts to drive collaboration and improve clinical standards worldwide.
Empowering our Community: We signed an international declaration advocating for rare disease research to be a priority in health policy, ensuring long-term funding for PSC.
Improving Care: We initiated collaborations with clinical experts to streamline specialist referral pathways, ensuring patients get the right care at the right time.
Organisational Excellence: We refined our strategic objectives to ensure every penny donated is focused on the most impactful work for our community.
Organisational Excellence: We met with our Board of Trustees to report on work so far this year to ensure the charity continues to meet the highest standards of governance and ensure we are delivering the maximum benefit for people with PSC.
Progressing Research: There are now 55 volunteers in our Patient Panel! The ensures that a diverse range of lived experiences directly shapes future PSC research and care.
Progressing Research: We reviewed research summaries for a pharmaceutical partner to ensure that study results are communicated clearly and transparently to our community.
Progressing Research: We provided patient leadership on a major new steering committee to ensure research into liver complications remains grounded in patient needs.
Progressing Research: The UK PSC Care Guidelines are going to be updated! We joined the national steering committee to update them, ensuring the "rulebook" for how doctors treat PSC is co-written by the patients who live with it.