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. Who is completing this survey?

* 2. What type of SMA affected your child / relative with SMA?

* 3. When were you bereaved by SMA?

* 4. Have you ever felt the need for emotional  / psychological support in relation to managing the impact of your child / relative's SMA?

  Very often Often Not often Never
During your child / relative's lifetime
Following bereavement

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

* 6. How did you find the counselling or psychological support you accessed?

  During your child / relative's lifetime Following bereavement
Via my GP
Via Health Services
Via Hospice services
Via the Internet
Recommended by a relative / friend
Via a social worker / social services
Other - please describe below

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

  Very Easy Easy Neither easy nor difficult Difficult Very difficult
During your child / relative's  lifetime
Following bereavement

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

  During your child / relative's lifetime Following bereavement
Counsellor
Genetic counsellor
Psychologist
Mental health worker
Relationship counsellor
Family Therapist
Bereavement counsellor
Other - please describe

* 9. In your view, have your counsellor(s) or psychologist(s) been sufficiently knowledgeable about the impact of progressive conditions like SMA?

  Very knowledgeable Knowledgeable Neither knowledgeable or not Not very Knowledgeable Not at all Knowledgeable
During your child / relative's lifetime
Following bereavement

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

  Very helpful Helpful Neither helpful nor unhelpful Not very helpful Not at all helpful
During your child / relative's lifetime
Following bereavement

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

  During your child / relative's lifetime Following bereavement
Family
Friends
Neuro-muscular health professionals
Other health professionals
Social Worker
SMA Support UK
MDUK
Bereavement Support Groups
Other voluntary organisation - please describe below
Other  - please describe below
None

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

  Yes No Maybe
During your child / relative's lifetime
Following bereavement

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

* 14. 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.

* 15. 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. 

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