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:
Organisational excellence: We simplified our personal data consent process and streamlined how we record patient stories to ensure that the lived experiences of our community are captured accurately and securely to inform future work.
Progressing Research: We coordinated a series of upcoming meetings with international researchers and pharmaceutical companies, which supports better informed decisions for people with PSC, research, or care. This groundwork helps keep PSC research focused on the primary needs of the patient community.
Progressing Research: We reviewed and contributed to scientific abstracts and posters for the upcoming EASL international liver congress, which strengthens the quality of future research for people with PSC, research, or care.
Progressing Research: We engaged with the MHRA to prepare for the upcoming national consultation on rare disease therapies, representing PSC patients in the wider community. Maintaining this direct dialogue ensures our organisation is prepared to respond formally and protect the interests of those living with PSC
Improving Care: We presented about what it is really like to live with PSC to gastroenterologists This first-hand insight equips healthcare professionals to better understand the day-to-day challenges of PSC.
Income Generation: We secured a place in the prestigious Big Give Small Charity Week match-funding campaign, so that we can maximise future donations from our supporters as every donation between 22 and 29 June will be doubled!
Progressing Research: We recruiting for a research and advocacy officer to expand our core team. This additional capacity ensures we can better support scientific studies and represent the patient voice at every level.