Primary biliary cholangitis (PBC)

About us

• Multi-disciplinary meetings: these are weekly meetings attended by the hepatology team where patients cases are discussed to ensure best management. Feedback is provided to patients after the meeting.
• Gastroenterologist clinics: they will discuss with you the nature, extent and severity of your disease and decide, along with you, what would be the most appropriate way to investigate and treat your PBC. You will be allocated a named consultant but, whilst they will lead your treatment, you will not necessarily see them at each appointment.
• Pharmacy liver clinics: these are led by specialist pharmacists and provide advice to patients about to start on a new treatment, prescribe and monitor patients on these new medications plus provide support with any medication concerns.
• Joint clinic between UHS and Kings College Hospital: these are quarterly meetings attended by hepatology teams of both UHS and KCH, where patients cases are discussed to ensure best management. Feedback is provided to patients after the meeting.
• Research: research is vital to make advances in liver conditions for both treatment and management. We have a dedicated team of research nurses whom may approach you to become involved and you can choose to be involved or not.
• Homecare medication service: provides medications to patients home. Different medications are supplied by different companies. Please make sure you know which company your medication comes from before contacting (this information will be in your welcome pack):
• Alcura:
  • Email: [email protected] or [email protected].
  • Telephone: 0800 028 0376

Getting ready for your appointment

• Our service runs across two sites, so please always check carefully whether your appointment is at the Royal Sussex County or Princess Royal Hospital.
• Your appointment may be face-to-face or via telephone – this will be detailed in your appointment letter and phone text reminder.
• If the appointment is by telephone please ensure you are in a place where you feel comfortable to discuss your symptoms.
• Please ensure you have a full list of your current medications (prescribed and bought) available for review.
• It may also be useful to keep a summary of your disease history, including facts such as your diagnosis, date diagnosed, current and previous medications (along with when and why they were stopped) and recent investigation results.
• You may be asked to do blood, sample tests, scans and/or biopsies to diagnose and monitor your PBC. We will send you the details if this is to be done before the clinic.
• Clinics may not run to time so please allow 30 minutes before and after your approximate scheduled slot for seeing/speaking with a clinician.
• If you wish to change or cancel your booking please call 0300 303 8360.

What happens at your appointment

• To ensure we are managing your PBC most appropriately, the clinician will ask you about your current symptoms and medications.
• If face-to-face you may need a physical examination.
• You may be asked to do blood, sample tests, scans and/or biopsies to diagnose and monitor your PBC. Blood tests can generally be taken a few days before clinic appointment, however, most other tests will be done a few days or weeks afterwards, the relevant department will send you the details.

Pregnancy/breastfeeding and IBD

Research

Research is vital to make advances in liver conditions for both treatment and management. Do you think you can help? We have a dedicated team of research nurses whom may approach you to become involved, you choose. Please discuss this with your gastroenterologist if interested.

Second Opinions

We are aware that decisions for some management strategies, including taking strong medications are very difficult. In some instances, you may want to be absolutely sure that every option has been considered, and that the advice you have received is correct. We discuss all complex decisions, at a weekly team meeting. However, if you have particular concerns and would like to see a different consultant, to get another view on your treatment, then please just ask us. We will not be offended. Please mention this in your clinic appointments.

Support and aftercare 

Please attend all your appointments promptly and let us know with as much notice as possible if you are unable to attend. 

We cannot stress strongly enough the importance of taking your medication as prescribed. If it is giving you side effects or you have concerns about taking it, please tell us straight away so that we can discuss this.

If you are pregnant or trying to conceive, then please tell a liver clinician as soon as possible as it may affect decisions about investigations and treatments.

You may find downloading the NHS app useful as you can look up your bloods and hospital appointments and also order regular medication via your GP.

Meet the team

Consultant Gastroenterologists with special interest in hepatology

• Dr Mark Austin
• Dr Neil Jackson
• Dr Khaleel Jamil
• Dr Nick Parnell
• Dr Jeremy Tibble
• Professor Sumita Verma

Gastro Specialised Pharmacy

• Naomi Hobbs
• Megan Hockly
• Angela Packham
• Fiona Rees (pharmacy lead)

Where we are

Contact us

Useful resources

• General information for PBC can be found on: PBC Foundation or British Liver Trust.
• Useful words glossary. Here are some common words you might see in our information or hear from your doctors and nurses.
• Physical activity and exercise
• Mental health, wellbeing and liver disease
• PBC Foundation (UK) Ltd. This is a national charity offering support and information to PBC sufferers, their families and friends. Their website contains a lot of helpful and reliable information. Information service: all: 0131 556 6811.
• British Liver Trust: This is a national charity offering support and information to patients with liver conditions and their families. Their website contains a lot of helpful and reliable information. Information service: 0800 652 7330.

Patient information leaflets

• Primary Biliary Cholangitis
• Medications for AIH: Ursodeoxycholic acid
• Obeticholic Acid (OCA) in Primary Biliary Cholangitis