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* 1. Address

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* 2. Would you be interested in sharing your story to strengthen our campaign work on emergency care?

Introduction and background

We know how important it is that people with a muscle-wasting condition get the vital care and support they need, especially in emergency situations. Our Ambulance Action campaign has been set up to help make this happen.

Muscular Dystrophy UK is calling for all people with a muscle-wasting condition at high-risk of needing emergency care to be able to have their care plans added to ambulance service ‘flagging’ systems. This means that as soon as paramedics and first responders are called to attend to an emergency, they are alerted at that point that the person they are treating has a muscle-wasting condition. At the same time, they are also informed about any specific emergency care needs.

We want to know your views and experiences on emergency care. This will help us build and develop our campaign to ensure that everyone with a muscle-wasting condition across the UK gets the best possible emergency care.

Thank you for your support.

For information: Survey to be completed from the perspective of the person with a muscle-wasting condition. If you are a family member/carer please answer the questions in this survey to the best of your knowledge on behalf of the person with a muscle-wasting condition.

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* 3. If you’ve called 999 and have been treated by paramedics during the past three years, please answer the following questions about your experience(s) of emergency care:

What is the name of the ambulance service that provided your emergency care?

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* 4. If you’ve called 999 and have been treated by paramedics during the past three years, please answer the following questions about your experience(s) of emergency care:

How far away from where you live is the centre where you receive neuromuscular care?

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* 5. Were you taken to the hospital where you receive neuromuscular care?

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* 6. Please add information in the box below if you would like to provide a more detailed response.

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* 7. Following the emergency call-out, how long was it before your neuromuscular care advisor and clinical team were involved in your care?

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* 8. Did you have a Muscular Dystrophy UK alert card when you received emergency care? Did the paramedics read it carefully and follow its advice?

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* 9. Please add information in the box below if you would like to provide a more detailed response.

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* 10. When you/your carer/family member told the paramedics about your condition and what your medical/other needs were, do you feel they listened to you and took your concerns seriously?

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* 11. Please add information in the box below if you would like to provide a more detailed response.

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* 12. Did the paramedics have a basic understanding of your condition and your emergency care needs?

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* 13. Did the staff at Accident and Emergency have a basic understanding of your condition and your emergency care needs?

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* 14. Please add information in the box below if you would like to provide a more detailed response.

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* 15. If there is any further information you would like to share with Muscular Dystrophy UK about your experience of emergency care, please add it in the box below.

Thank you for completing this document. All personal information will be treated as confidential and will not be shared with anyone outside of Muscular Dystrophy UK.
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