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1. Where was the last place you went for your usual sickle cell appointment?
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 doctors and nurses that you saw know enough about sickle cell?

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4. Thinking about this recent appointment for your sickle cell (as indicated in Question 1)
Did the doctors and nurses talk to you (rather than your parent/carer) in a way that you could understand?

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5. Did the doctors and nurses answer your questions clearly?

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6. Were the doctors and nurses friendly and helpful?

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7. Did you (rather than your family) have the chance to speak to staff if you needed to?

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8. Could you choose to have your parent or carer with you at this appointment?

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9. When did you last need urgent treatment because you were poorly with sickle cell?

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10. When you last had urgent treatment for your sickle cell, what did you and your parent 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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11. Did the emergency healthcare staff that you saw know enough about sickle cell?

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12. Were the emergency healthcare staff friendly and helpful?

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13. Did the emergency staff help your pain go away?

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

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16. Do you think that there were enough doctors and nurses to look after you on the hospital ward?

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17. Do you have enough information about your sickle cell?

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

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19. Do healthcare staff give enough information to others (such as school, college or place of work) about your condition and how it affects you?

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20. Do you have enough information about different treatment options (such as medications)?

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21. Do you have a say in what happens with your care?

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22. Do you have enough information about when and how to use your medication?

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23. Do you have enough information about coping with pain?

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24. Do your friends know enough about sickle cell and understand the condition?

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

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26. Do you have the chance to meet other people with sickle cell, for support?

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27. Do you think you are given enough help to cope with your sickle cell?

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

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

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

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31. 1 How old are you (in years)?

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32. What do you identify as?

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33. Please provide us with the FIRST part (ie. OX3, OX17) of your postcode:

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34. Who was the main person who completed this questionnaire?

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35. Please describe in three words how living with sickle cell makes you feel.

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36. Is there anything that is good about the care you receive for your sickle cell?

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

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