Appointment

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* 1. Where did you last receive care for your sickle cell condition? - Please just think about pre-booked visits, not emergency care.

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* 2. How long ago was this?

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* 3. Did the healthcare staff that you saw know enough about sickle cell disorder?

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* 4. Did healthcare staff talk to you in a way that you could understand?

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* 5. Did healthcare staff answer your questions clearly?

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* 6. Were healthcare staff sympathetic and understanding?

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* 7. When did you last have emergency or urgent care for your sickle cell disorder?

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* 8. When you last had emergency care for your sickle cell disorder, what did you first do for help?

Please select ONE only. If you went to more
than one then please select the one you went
to FIRST.

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* 9. Why did you decide to do this first?
Please tick ALL that apply

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* 10. Did the emergency healthcare staff that you saw know enough about sickle cell disorder?

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* 11. Were the emergency healthcare staff sympathetic and understanding?

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* 12. Did the emergency staff help ease your pain?

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* 13. Within the last year, have you stayed on a hospital ward, either overnight or on a day unit (e.g. to receive treatment)?
This does NOT include outpatient/clinic
appointments

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* 14. Was the ward that you stayed on suitable for your age?

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* 15. In your opinion, were there enough doctors and nurses on duty to care for you on the hospital ward?

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* 16. Do you have enough information about your sickle cell condition?

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* 17. Which of the following do you use to find out information about sickle cell disorder? Please tick ALL that apply

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* 18. Do healthcare staff give enough information to others (such as your place of work/study) about your condition and how it affects you?

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* 19. Do you have enough information about different treatment options (such as bone marrow transplant and blood transfusions)?

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* 20. Are you involved enough in decisions about your condition and different treatment options?

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* 21. Do you have enough information about when and how to use your medication(s)?

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* 22. Do you have enough information about coping with pain?

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* 23. Do your friends and co-workers know enough about sickle cell disorder and understand the condition?

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* 24. Do you have information about support groups for your condition (e.g. Sickle Cell Society or local support groups)?

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* 25. Do you have the chance to meet other people with Sickle Cell Disorder, for support?

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* 26. Have you been offered the chance to see a counsellor or psychological services for support with your condition?

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* 27. Do you ever have to repeat your story to different members of healthcare staff?

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* 28. Overall, how well do you think your sickle cell disorder is looked after by healthcare staff?

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* 29. Does sickle cell disorder cause you difficulty with any of the following?
Please tick ALL that apply

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* 30. How old are you?

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* 31. What do you identify as?

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* 32. Please provide us with the FIRST part (i.e. OX3, OX17) of your postcode:
(This is to help us see if there are differences in care around the country)

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* 33. Please describe in three words how living with sickle cell disorder makes you
feel.

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* 34. Is there anything that is particularly good about the care you receive for your
sickle cell disorder?

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* 35. Is there anything about the care you receive for your sickle cell disorder that
could be better?

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