We would like to hear from people with 22q11 Syndrome and their current experience of accessing health care in adult services.

What is your 22q11.2 diagnosis?

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* 1. What is your 22q11.2 diagnosis?

What is your age?

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* 2. What is your age?

What is your gender?

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* 3. What is your gender?

Which region of the UK do live

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* 4. Which region of the UK do live

Who is the key healthcare person responsible for managing your care

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* 5. Who is the key healthcare person responsible for managing your care

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).

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* 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).

How many hospital appointments do you attend on average during a 3  month period.

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* 7. How many hospital appointments do you attend on average during a 3  month period.

How many hospital specialists have you seen in the last 12 months?
(like  surgeons, consultants, clinical pyschologists, specialist nurses or others)

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* 8. How many hospital specialists have you seen in the last 12 months?
(like  surgeons, consultants, clinical pyschologists, specialist nurses or others)

Do you have the opportunity to see a number of specialists at one visit   to your local hospital

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* 9. Do you have the opportunity to see a number of specialists at one visit   to your local hospital

If answering yes to question 9  please explain how this was organised.

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* 10. If answering yes to question 9  please explain how this was organised.

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?

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* 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
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What suggestions do you have to improve your healthcare provision

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* 12. What suggestions do you have to improve your healthcare provision

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.

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* 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.

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