The initial management of primary biliary cholangitis is through secondary care liver services, known as hepatology, and is commissioned by integrated care boards (ICBs). ICBs are responsible for arranging National Health Service services which meet the needs of their respective populations. A proportion of patients do not respond well to first line medical treatments and should be referred to specialised hepatology centres for advanced, second line therapies. These are commissioned by NHS England from specialised centres. Through the England rare diseases action plans, we are working to address sources of inequity and build a fairer system. Work is ongoing to include rare diseases in NHS England’s Core20PLUS5 framework, to support ICBs in addressing inequalities. In the 2025 action plan, we have introduced an action to incentivise providers to run clinics for multi-system disorders, which recognises the importance of a multidisciplinary approach and reduces the burden of co-ordination of care on families.

The NHS.UK website has a conditions page on primary biliary cholangitis, available in an online only format, which provides an overview of the care pathway. NHS England commissions a specialist paediatric liver service from three hospitals, the Birmingham Women's and Children's Hospital NHS Foundation Trust, the King's College Hospital NHS Foundation Trust, and the Leeds Teaching Hospitals NHS Trust. This service provides assessment, diagnosis, and management of children with all forms of liver disease, including primary biliary cholangitis.

We remain committed to improving the lives of people living with rare diseases, such as primary biliary cholangitis. One of the four priorities of the UK Rare Diseases Framework is increasing awareness of rare diseases among healthcare professionals.  Our fourth England action plan, published in February 2025, reports on progress.

GeNotes is an online resource for clinicians, providing educational information as needed. This year the specialty of gastro-hepatology was launched in GeNotes, and includes resources for clinicians on primary biliary cholangitis.

NHS England, through the Hepatobiliary and Pancreas Clinical Reference Group, is working with partners to raise awareness and understanding of primary biliary cholangitis and its treatments. Plans include production of a treatment algorithm for use by emergency departments, which may also be helpful for general practitioners.

We remain committed to improving the lives of people living with rare diseases, such as primary biliary cholangitis. One of the four priorities of the UK Rare Diseases Framework is increasing awareness of rare diseases among healthcare professionals. Our fourth England action plan, published in February 2025, reports on progress.

The Royal College of General Practitioners (RCGP) has a holistic curriculum of training, with a specific section on women’s health, including menopause. To support practicing general practitioners, the RCGP has developed a Women’s Health Library with educational resources and guidelines on women’s health, which includes a specific section on menopause.

Primary biliary cholangitis has a set of commonly found symptoms, and work is underway to raise awareness of them. NHS England, through the Hepatobiliary and Pancreas Clinical Reference Group, is working closely with partners to raise awareness and understanding of primary biliary cholangitis and its treatments. Plans include the production of a treatment algorithm for use by emergency departments, which may also be helpful for general practitioners.

The Government is committed to prioritising women’s health as we build a National Health Service fit for the future. We are continuing to implement the Women’s Health Strategy, for example by providing support for pregnancy loss through a full rollout of baby loss certificates, with menopause support in the workplace, and by boosting women’s participation in research and clinical trials.

In the longer term, our priorities for delivering the strategy will be aligned with the 10 Year Plan and the Government's missions. The 10 Year Plan will set out how we tackle the inequities that lead to poor health, including those for women.

The Government is also committed to improving the lives of those living with rare diseases, such as primary biliary cholangitis. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, which include helping patients get a final diagnosis faster and increasing awareness of rare diseases among healthcare professionals. We remain committed to delivering under the framework and published the annual England action plan in February 2025.

The Department of Health and Social Care (DHSC) funds medical research through the National Institute for Health and Care Research (NIHR). NIHR funds, enables, and delivers high-quality research to improve patient care and public health and supports liver research through a range of funding programmes, training, support for researchers and facilities.

UKRI delivers a substantial portfolio of researcher-led projects. This includes biological, physiological, mechanistic and clinical studies to investigate the causes and underpin the development of treatments for a variety of liver conditions/diseases.

Details of UKRI and NIHR funding on specific areas is provided in the table below:

The Government is committed to improving the lives of those living with rare diseases, including non-genetic rare diseases such as primary biliary cholangitis. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, to help patients get a final diagnosis faster, increase awareness of rare diseases amongst healthcare professionals, better coordinate care, and improve access to specialist care, treatment, and drugs. All four nations of the United Kingdom have published action plans setting out how these priorities will be delivered. We remain committed to delivering under the framework and will publish our fourth annual England action plan in 2025, which will report on progress. Actions include research to improve our understanding of the diagnostic journey and the development of innovative digital resources, making information on rare conditions easily available to healthcare professionals, including general practitioners. Continued development of educational resources through the NHS England Rare Disease Education Hub is helping to increase health care professionals’ awareness of rare conditions.

The Government is committed to improving the lives of those living with rare diseases, including non-genetic rare diseases such as primary biliary cholangitis. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, to help patients get a final diagnosis faster, increase awareness of rare diseases amongst healthcare professionals, better coordinate care, and improve access to specialist care, treatment, and drugs. All four nations of the United Kingdom have published action plans setting out how these priorities will be delivered. We remain committed to delivering under the framework and will publish our fourth annual England action plan in 2025, which will report on progress. Actions include research to improve our understanding of the diagnostic journey and the development of innovative digital resources, making information on rare conditions easily available to healthcare professionals, including general practitioners. Continued development of educational resources through the NHS England Rare Disease Education Hub is helping to increase health care professionals’ awareness of rare conditions.

The information requested is not held centrally.