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
- Share details of all current medicines.
- How can I contact you if I have concerns that I think relate to my PSC?
- What symptoms would you expect me to seek immediate medical care for?
- How often will I need to see you for my routine care?
- What tests do I need now and how often will I have them (e.g. colonoscopy, DXA scan, ultrasound)?
- 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)?
- Share your current symptoms and have them written down (although your PSC doctor should ask!) e.g. pain, itch, fatigue, nausea, fever/chills.
- Can I give a UK-PSC blood sample?
- Am I eligible to go on any current clinical trials (or PSC research in this hospital)?
- Do I need any vaccinations? (flu, hepatitis A and B, pneumococcal vaccine)
Routine appointment questions
- Check PSC doctor has all available test results/ check when next tests are due.
- Share details of all current medicines.
- How can I contact you if I have concerns that I think relate to my PSC?
- Is my PSC stable? If not, what are the next steps? Consider referral for expert specialist opinion.
- What symptoms would you expect me to seek immediate medical care for?
- Remember to share your current symptoms and have them written down (although your PSC doctor should ask!): eg pain, itch, fatigue, nausea, fever/chills.
- Share details of relevant events such as bacterial cholangitis or unplanned hospital visits since last appointment.
- If you have had bacterial cholangitis, ask for a follow-up MRI scan.
- Am I eligible to go on any current clinical trials (or PSC research in this hospital)?
- Is this hospital working towards IQILS accreditation? Can I get involved?