Q2. What is your gender?
* Q3. What is the gender of the patient with thalassaemia?
* Q4. How old is the patient with thalassaemia?
* Q5. What type of thalassaemia does the patient have? * Q6. Did members of staff (treating the person with thalassaemia) give you enough information about thalassaemia in a way that you could understand?
* Q7. How hard did you find coming to terms with your child/ loved one’s diagnosis of diagnosis? (Please tick all that apply) Q8. Are you aware of the health care staff involved in the patient’s thalassaemia care and know how to contact them (excluding GPs)?
* Q9. Are you aware of the community services and know how to contact them?
* Q10. Do you feel you have adequate support and information available at the patient’s unit on managing thalassaemia?
* Q.11 What type of information would you find helpful? Q12. How do you rate the level of support that is given by the hospital to patients with thalassaemia and their families or carers?
* Q13. Are you aware of the signs/symptoms of infection, pain, sepsis…etc and when to seek emergency care?
* Q14. Who would you contact in a thalassaemia related issue/ emergency during working hours (Monday- Friday 9am-5pm)? Q15. Who would you contact in a thalassaemia related issue/ emergency during non-working hours (evenings, weekends and bank holidays)? Q16. Do you use the internet to learn more about thalassaemia?
* Q17. Do you receive copies of the patient’s medical letters sent to their GP?
* Q18. Do the patient’s thalassaemia team discuss potential clinical trials with you?
* Q19. If you had to provide comments/ feedback or make a complaint about the care the patient received at hospital, who would you speak to? Q20. Do you feel the thalassaemia team has a good understanding/ specialist knowledge about the patient’s condition?
* Q21. Do you feel you are being heard or listened to when you voice your worries or concerns?
* Q22. Were both you and the patient treated with dignity and respect by the thalassaemia team?
* Q23. Do you have confidence in the thalassaemia team?
* Q24. Is the unit well equipped for the patient’s needs (chairs comfortable etc)?
* Q25. Do you have any more comments about your haematology team/ unit? Blood Transfusions Q26. Thinking about the patient’s most recent transfusion, how long after the initial appointment time, did their blood transfusion start?
* Q27. How would you rate the care during the patient’s blood transfusion and why you chose this rating?
* Q28. Would you like to extend opening hours for blood transfusion?
* Specialist Care and Monitoring Q29. How often the patient is reviewed by their haematology team?
* Other comments for Q29 Q30. How often does the patient do regular blood tests to monitor their iron levels, hormone levels or any side effects from the iron chelation medication?
* Q31. How often does the patient have a MRI of their heart and liver?
* Other comments for Q31 Q32. How often does the patient see a doctor who specialises in hormones/ bone health/ reproductive health?
* Other comments for Q32 Q33. How often does the patient have an appointment with an eye doctor in hospital?
* Other comments for Q33 Q34. How often does the patient have an appointment to check your hearing in hospital?
* Other comments for Q34 Q35. Do you think you are given enough information about the patient’s possible response to iron chelation medication and other treatment?
* Q36. Did any member of staff tell you about iron chelation medication side effects to look out for?
* Q37. Have you been involved in the decision as much as you wanted about what iron chelation medication the patient should be on?
* Q38. Do you feel you know enough about iron chelation therapy?
* Q39. Do you receive any of the iron chelation medication (for the patient) from delivery companies?
* Q40. How would you rate their service?
* Q41. For those currently using desferal infusors, can you tell us about your experience- the good and the bad? (What infusor do you use and how well is it working?) Thalassaemia Clinic Appointments Q42. Can you rate your experience of making clinic appointments?
* Q43. Did you have enough time to discuss the patient’s thalassaemia care with their doctor?
* Q44. Did the patient’s doctor explain reasons for any new treatments or investigations in a way you could understand?
* Q45. Do you feel the patient is being referred to specialists outside of their thalassaemia team in a timely manner?
* Accident and Emergency Q46. In the last 12 months, how many times has the patient visited the emergency department?
* Q47. How would you rate the experience?
* Please tell us why you chose that rating? Q48. Did the health care professionals treating the patient in A&E have any knowledge of thalassaemia?
* Q49. Do you feel confident going back to A&E?
* Inpatient care / Ward Q50. In the last 12 months as the patient been admitted to an inpatient ward?
* Q51. How would you rate the patient’s care on the ward?
* Q52. Do you feel the staff on the wards were adequately trained to look after them?
* Q53. Would you like to leave any additional comments? Support Q54. Do you have access to? Tick all that apply Q55. Can you name two things you like about the thalassaemia services you receive? Q57. If you had to design future thalassaemia services, what would you hope decision makers kept in mind? Q56. Can you name two things about the thalassaemia services you’d like improved or changed over the next two years? (copy) Q57. Which hospital is your child/loved one treated at? * Thank you for participating in this survey!