Exit Top 10 PSC Issues Questions are for anyone affected by PSC (i.e. patients, family members, friends).We would like to know what the biggest issues are for people affected by PSC. We'll use the answers to support our work to improve services for people with PSC. Question Title * 1. What is your interest in PSC? I have been diagnosed with PSC (and have NOT had a transplant) I have had a transplant for PSC Still being investigated: I do not yet have a PSC diagnosis I know someone with PSC I am a healthcare professional who looks after people with PSC Please indicate how much of an issue the following are to you - Question Title * 2. The variations in standards of care between hospitals A big issue A little bit of an issue Not an issue Question Title * 3. The lack of psychological support offered to PSC patients A big issue A little bit of an issue Not an issue Question Title * 4. The lack of understanding about PSC from others A big issue A little bit of an issue Not an issue Question Title * 5. Explaining PSC to others A big issue A little bit of an issue Not an issue Question Title * 6. Getting reliable information about PSC A big issue A little bit of an issue Not an issue Question Title * 7. Knowing when urgent medical attention is needed A big issue A little bit of an issue Not an issue Question Title * 8. Uncertainty about future health A big issue A little bit of an issue Not an issue Question Title * 9. Preparing for colonoscopies A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 10. Managing itch A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 11. Managing pain A big issue A little bit of an issue Not an issue Question Title * 12. Managing fatigue A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 13. Managing IBD A big issue A little bit of an issue Not an issue Question Title * 14. Managing nausea A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 15. Knowing what food to eat/avoid A big issue A little bit of an issue Not an issue Question Title * 16. Contacting PSC consultant A big issue A little bit of an issue Not an issue Question Title * 17. Getting hold of prescribed medicines A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 18. GPs understanding the care needs of someone with PSC A big issue A little bit of an issue Not an issue Question Title * 19. Access to clinical trials (research) for PSC A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 20. Accessing financial products (eg travel insurance, life insurance) A big issue A little bit of an issue Not an issue Question Title * 21. Accessing welfare benefits/ knowing what benefits (if any) people with PSC are entitled to A big issue A little bit of an issue Not an issue Question Title * 22. Taking time off work because of ill-health A big issue A little bit of an issue Not an issue This doesn't apply to me Question Title * 23. Any other big issues that come to mind? Let us know here: Thank you very much for taking the time to give your views. Now click 'Done' to submit your answers. Privacy NoticeThe information in this survey is being collected by PSC Support. It consists of answers to multiple-choice questions and a single free-text question, none of which contain personally identifiable data. The anonymised results may be published on our website and through our email bulletins and social medial channels, and will be used for advocacy purposes to improve services for people with PSC. For more information about how PSC Support looks after your data, please see our Privacy Policy. Done
