Make the most of the precious time in your appointment, so be prepared. Write down any questions you have in advance.

Here are some questions we suggest considering:

First appointment questions

  1. Share details of all current medicines.
  2. How can I contact you if I have concerns that I think relate to my PSC?
  3. What symptoms would you expect me to seek immediate medical care for?
  4. How often will I need to see you for my routine care?
  5. What tests do I need now and how often will I have them (e.g. colonoscopy, DXA scan, ultrasound)?
  6. How often will I need blood tests? Can I arrange to get them done locally a couple of weeks before I next see you and bring along the results (if you can’t access them)?
  7. Share your current symptoms and have them written down (although your PSC doctor should ask!) e.g. pain, itch, fatigue, nausea, fever/chills.
  8. Can I give a UK-PSC blood sample
  9. Am I eligible to go on any current clinical trials (or PSC research in this hospital)?
  10. Do I need any vaccinations? (flu, hepatitis A and B, pneumococcal vaccine) 


Routine appointment questions

  1. Check PSC doctor has all available test results/ check when next tests are due.
  2. Share details of all current medicines.
  3. How can I contact you if I have concerns that I think relate to my PSC?
  4. Is my PSC stable? If not, what are the next steps? Consider referral for expert specialist opinion.
  5. What symptoms would you expect me to seek immediate medical care for?
  6. Remember to share your current symptoms and have them written down (although your PSC doctor should ask!): eg pain, itch, fatigue, nausea, fever/chills.
  7. Share details of relevant events such as bacterial cholangitis or unplanned hospital visits since last appointment.
  8. If you have had bacterial cholangitis, ask for a follow-up MRI scan.
  9. Am I eligible to go on any current clinical trials (or PSC research in this hospital)?
  10. Is this hospital working towards IQILS accreditation? Can I get involved?


 Download and print off the suggested questions below.

Quality information: this information has been reviewed by a panel (Q1) of patients and experts.
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