The All Party Parliamentary Group for Muscular Dystrophy (APPG for MD) is conducting a six-month inquiry into  the need for and access to psychological support for people affected by muscle-wasting conditions - this includes SMA. We want to make sure your views are heard.
We will collate all the replies we receive and will not use any of your personal identifying information in the summary unless you have given us permission to do so. We will share the results with Muscular Dystrophy UK who will collate all the replies they receive and report to the APPG for MD. We will also publish the results on our website
You can say as much or as little as you like. We expect the survey to take about 10 - 30 minutes to complete.
Closing date for replies is Friday 27th April 2018
Thank you.

* 1. How old are you?  Please tick one

* 2. What type of SMA affects you?

* 3. Have you ever felt the need for emotional  / psychological support in relation to managing the impact of your SMA?

  Very often Often Not often Never
In the past

* 4. Have you ever accessed counselling or psychological support?

* 5. How did you find the counselling or psychological support you accessed? (please tick all that apply)

  Now In the past
Via my GP
Via Health Services
Via the Internet
Recommended by a relative / friend
Via a social worker / social services
Other - please describe below

* 6. What in particular made you access counselling or psychological support? (tick all that apply)

  Now In the past
a particular time / event e.g. a time of change or transition
an ongoing need

* 7. How easy was it to for you to access counselling / psychological support?

  Very Easy Easy Neither easy or nor difficult Difficult Very difficult
In the past

* 8. Can you tell us more about who has provided  your counselling / psychological support?

  Now In the past
School Counsellor
Mental health worker
Relationship Counsellor
Family Therapist
Other - please describe below

* 9. In your view has your counsellor or psychologist been sufficiently knowledgeable about the impact of long - term progressive conditions like SMA?

  Very knowledgeable Knowledgeable Neither knowledgeable or not Not very Knowledgeable Not at all Knowledgeable
In the past

* 10. How helpful has your counselling / psychological support been?

  Very helpful Helpful Neither helpful nor unhelpful Not very helpful Not at all helpful
In the past

* 11. What, if any, other sources of emotional and psychological support have you accessed? (tick as many as apply)

  Now In the past
Neuro-muscular health professionals
Other health professionals
Social Worker
SMA Support UK
Other voluntary organisation - please describe below
Other  - please describe below

* 12. Looking back at how you have managed the impact of your SMA, would you have wanted better access to counselling and psychological support?

* 13. Looking forward at how you will continue to manage the impact of your SMA, would you have want access to counselling and psychological support?

* 14. Is there anything else you would like to say about the need for or access to counselling or psychological support in relation to SMA?

* 15. The anonymised statistical results of this survey will be used to let MDUK and the APPG for MD know what people affected by SMA think about access to psychological support.  We will also publish the results on our website. W e would also like to be able to quote what people have told us. Unless you give your permission, we will not identify you. Please tell us if you are willing for us to include what you have written in this survey.

* 16. If you would like to tell us who you are, please complete the details below. We will make sure to follow the instruction you have given us in your answer above. We will not pass on any other details of your contact  information.