We have received over 600 surveys so far - join others, share your experiences and campaign for real change.

Please try to answer all of the following questions. If a question is not applicable, please write N/A. Each question is tailored for the individual affected by a neuromuscular condition, even if you are answering it on behalf of that individual.

Your views are vital and will form the central part of a report being launched in September. We need your help to tell us where the gaps in service are across the UK so that we can conduct campaigns on your behalf to improve services.

If there is the possibility of answering on behalf of more than one individual please fill out the questionnaire twice, or contact campaigns@muscular-dystrophy.org or call 0207 803 4847 to request a printed copy.

* denotes a required field

3. What was your experience of the diagnosis process (from the time symptoms began to confirmed diagnosis)?

How often do you receive specialist care for your condition?

5.1 Do you have access to a specialist neuromuscular consultant (not a general neurologist)?

How do you rate the service the you receive from your consultant?

5.2 Do you see a physiotherapist?

If yes, does he / she understand your condition?

How is this funded?

Do you feel that you get enough physiotherapy?

5.3 Do you receive regular hydrotherapy in a hydrotherapy pool?

If yes, where do you access this?

5.4 Do you see a specialist muscle nurse?

If yes, how do you rate the service that you receive?

5.5 Do you see an occupational therapist?

If yes, does he / she understand your condition?

Have you experienced any delays in receiving an appointment with your OT?

Does he / she come to your home?

How do you rate the service that you receive?

5.6 Do you see a speech and language therapist (SALT)?

If yes, does he / she understand your condition?

How do you rate the service that you receive?

5.7 Do you see a dietician?

If yes, does he / she understand your condition?

How do you rate the service that you receive?

5.8 Do you have a key worker or care co-ordinator that you can contact?

How do you rate the service that you receive?

6.1 Do you see a social worker?

If yes, is this your key worker / care co-ordinator?

How do you rate the service that you receive?

6.2 Are you satisfied with the amount and clarity of information about the services that are available to you?

6.3 Are you satisfied with the level of emotional support for you and your family members?

7.1 Do you use a wheelchair? (If no please go to question 8)

7.2 How often do you use your wheelchair?

7.3 Which of the following describes your wheelchair?

7.4 How is this funded?

7.5 Have you experienced any delays or difficulties in receiving the appropriate chair?

How do you rate the service that you receive for assistance in the upkeep of your wheelchair?

8. How was/is your experience of the transition from childhood to adult services?

9.1 What are your living arrangements?

9.2 Has living with a neuromuscular condition affected your income or standard of living? (e.g. not being able to work, having to purchase equipment yourself, etc.)

9.3 How do you rate the support that you have received regarding living independently?

9.4 Have you experienced any delays or difficulties in receiving the appropriate home adaptations by your local authority?

9.5 If it is suitable, did you receive grant assistance for the maintenance of home adaptations?

10.1 If you are a carer / family member completing this survey on behalf of an individual, have you received a carer’s assessment?

10.2 Do you have regular access to respite care? e.g. hospice, care home, etc.

11. Overall, how well does your carer feel his / her needs have been met?

12. Have you experienced any delays in receiving timely health and social care?

13. Are you in employment?

If no, are you currently seeking employment?

14. Are you currently in education?

15. Do you want to attend a local launch event for the report?

Would you be willing for us to contact you to share your experiences

Are you happy for your comments to be published in the report?