Paediatrics Sickle Cell Survey Question Title * 1. Where was the last place you went for your usual sickle cell appointment?Please just think about pre-booked visits, not emergency care Overnight stay in hospital (inpatient) Day unit in hospital - e.g. for pain relief or blood transfusions Hospital outpatient or clinic appointment GP / family doctor Other (please specify) Question Title * 2. How long ago was this? Within the last 6 months - Go to Question 3 More than 6 months ago - Go to Question 9 Can’t remember - Go to Question 9 Question Title * 3. Did the doctors and nurses that you saw know enough about sickle cell? Yes, definitely Yes, sort of No Question Title * 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? Yes, definitely Yes, sort of No Question Title * 5. Did the doctors and nurses answer your questions clearly? I did not have any questions I did not have the chance to ask Yes, definitely Yes, sort of No Question Title * 6. Were the doctors and nurses friendly and helpful? Yes, completely Yes, sort of No Question Title * 7. Did you (rather than your family) have the chance to speak to staff if you needed to? Yes, completely Yes, sort of No I did not need to Question Title * 8. Could you choose to have your parent or carer with you at this appointment? Yes No, but I did not mind No, but I would have liked this Question Title * 9. When did you last need urgent treatment because you were poorly with sickle cell? I never had urgent treatment - Go to Question 14 Within the last 6 months - Go to Question 10 More than 6 months ago - Go to Question 14 Can’t rememberGo to Question 14 Question Title * 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. Called a specialist sickle cell nurse - Go to Question 11 Treated at home without contacting anyone - Go to Question 14 Went to a GP - Go to Question 11 Went to A&E - Go to Question 11 Called 999 for an ambulance - Go to Question 11 Other- Go to Question 11 Question Title * 11. Did the emergency healthcare staff that you saw know enough about sickle cell? Yes, definitely Yes, sort of No Question Title * 12. Were the emergency healthcare staff friendly and helpful? Yes, completely Yes, sort of No Question Title * 13. Did the emergency staff help your pain go away? Yes, quickly enough Yes, but it could have been quicker No, they did not help make my pain go away I was not in any pain Question Title * 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/clinicappointments. Yes, within the last year - Go to Question 15 No, not within the last year - Go to Question 17 Question Title * 15. Was the ward that you stayed on suitable for your age? Yes, definitely Yes, sort of No Question Title * 16. Do you think that there were enough doctors and nurses to look after you on the hospital ward? All or most of the time ome of the time Not really or never Question Title * 17. Do you have enough information about your sickle cell? Yes, definitely Yes, sort of No Question Title * 18. Which of the following do you use to find out information about sickle cell?Please tick ALL that apply NHS or sickle cell centre website Sickle Cell Society Leaflets and other written information Asking NHS staff Google searches YouTube videos Ask friends and family None of the above Other (please specify) Question Title * 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? Yes, enough information Some, but not enough information None, but I would like this This is not needed I do not go to school / work Don’t know / not sure Question Title * 20. Do you have enough information about different treatment options (such as medications)? Yes, definitely Yes, sort of No, but I would like this This is not needed Question Title * 21. Do you have a say in what happens with your care? Yes, definitely Yes, sort of No, but I would like this This is not needed Question Title * 22. Do you have enough information about when and how to use your medication? Yes, definitely Yes, sort of No I do not use medication Question Title * 23. Do you have enough information about coping with pain? Yes, enough information Some but not enough information Very little or no information Question Title * 24. Do your friends know enough about sickle cell and understand the condition? Yes, they know enough They know some, but not enough They know little or nothing It is not needed Don’t know Question Title * 25. Do you have information about support groups for your condition (e.g. Sickle Cell Society or local support groups)? Yes, enough information Some but not enough information No, but I would like this I do not want or need this Question Title * 26. Do you have the chance to meet other people with sickle cell, for support? Yes, and I find this helpful Yes, but I do not find this helpful No, but I would like this I do not want or need this Question Title * 27. Do you think you are given enough help to cope with your sickle cell? Yes No, but I would like this No, but I do not need this Question Title * 28. Do you ever have to repeat your story to different members of healthcare staff? Yes, and this bothers me Yes, but I do not mind No Question Title * 29. Overall, how well do you think your sickle cell is looked after by healthcare staff? Very well Quite well Not very well Question Title * 30. Does sickle cell cause you difficulty with any of the following?Please tick ALL that apply Everyday activities that people your age can usually do At work, at school, or training Access to buildings, streets or vehicles People’s attitudes to you because of your condition Communicating, mixing with others or socialising Any other activity No difficulty with any of these Question Title * 31. 1 How old are you (in years)? Question Title * 32. What do you identify as? Male Female Non-Binary Transgender Male Transgender Female Other (please specify) Question Title * 33. Please provide us with the FIRST part (ie. OX3, OX17) of your postcode: Question Title * 34. Who was the main person who completed this questionnaire? The young person / patient The parent / carer of the young person / patient Both parent / carer and young person together Other Question Title * 35. Please describe in three words how living with sickle cell makes you feel. Question Title * 36. Is there anything that is good about the care you receive for your sickle cell? Question Title * 37. Is there anything about the care you receive for your sickle cell that could be better? Done
