Health care provision for adults with 22q11 DS We would like to hear from people with 22q11 Syndrome and their current experience of accessing health care in adult services. OK * 1. What is your 22q11.2 diagnosis? 22q11.2 Deletion 22q11.2 Duplication Other, please give diagnosis below Other (please specify) OK * 2. What is your age? 18 to 24 25 to 34 35 to 44 45 to 54 55 to 64 65 to 74 75 or older OK * 3. What is your gender? Female Male OK * 4. Which region of the UK do live East East Midlands London North East North West Northern Ireland Scotland South East South West Wales West Midlands Yorkshire And The Humber OK * 5. Who is the key healthcare person responsible for managing your care General Practioner (GP) Disability Nurse Other (please specify) OK * 6. Do you manage all aspects of your healthcare. ( for example booking appointments, explaining how you are affected, understanding the content of clinic letters, following up recommendations). Yes Yes mainly, but I need some help from my family Yes, but with some help from a professional, such as social worker, disability team, or other No, I rely heavily on my carers for support in organising appointments and making sure my doctors understand the problems I have with my health. OK * 7. How many hospital appointments do you attend on average during a 3 month period. Less than 5 Between 5 - 10 Between 11 - 20 More than 20 OK * 8. How many hospital specialists have you seen in the last 12 months? (like surgeons, consultants, clinical pyschologists, specialist nurses or others) None 1 specialist 2 3 4 5 or more specialists OK * 9. Do you have the opportunity to see a number of specialists at one visit to your local hospital Yes Sometimes No never OK * 10. If answering yes to question 9 please explain how this was organised. OK * 11. Using any number from 0 to 10, where 0 is the worst health care possible and 10 is the best health care possible, what number would you use to rate all your health care in the last 12 months? 10 Best health care possible 9 8 7 6 5 4 3 2 1 0 Worst health care possible . . 10 Best health care possible . 9 . 8 . 7 . 6 . 5 . 4 . 3 . 2 . 1 . 0 Worst health care possible OK * 12. What suggestions do you have to improve your healthcare provision OK * 13. If you would like Max Appeal to contact you further about adult care for those with 22q11 Syndrome and the issues raised in this survey, please provide your email address. OK DONE. THANK-YOU FOR COMPLETING THE SURVEY.