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 so that we can hold a relevant and informative 'Top 10 PSC Issues' session at our Information Day. We'll also use the answers to support our work to improve services for people with PSC.

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* 1. What is your interest in PSC?

Please indicate how much of an issue the following are to you -

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* 2. The variations in standards of care between hospitals

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* 3. The lack of psychological support offered to PSC patients 

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* 4. The lack of understanding about PSC from others

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* 5. Explaining PSC to others

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* 6. Getting reliable information about PSC

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* 7. Knowing when urgent medical attention is needed

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* 8. Uncertainty about future health

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* 9. Preparing for colonoscopies

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* 10. Managing itch

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* 11. Managing pain

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* 12. Managing fatigue

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* 13. Managing IBD

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* 14. Managing nausea

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* 15. Knowing what food to eat/avoid

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* 16. Contacting PSC consultant

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* 17. Getting hold of prescribed medicines

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* 18. GPs understanding the care needs of someone with PSC

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* 19. Access to clinical trials (research) for PSC

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* 20. Accessing financial products (eg travel insurance, life insurance)

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* 21. Accessing welfare benefits/ knowing what benefits (if any) people with PSC are entitled to

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* 22. Taking time off work because of ill-health

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* 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. We will talk about the most common issues at our Information Day. Now click 'Done' to submit your answers.
Privacy Notice
The 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. We will share the survey results (excluding email addresses if provided) with the speakers at our forthcoming Information Day. 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.

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