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Our Survey: So What Did You Tell Us?

29 June 2017

Our Survey: So What Did You Tell Us?

Thank you to those of you who completed our survey and told us what you think of our current services and gave us your ideas about our future direction. Our trustees will be considering all you had to say over the next few months. In the meantime, here are the results...

What you told us

The Individual and Family Survey

We heard from 79 people affected by SMA. Over the last 5 years:

  • 86% had used our condition related information. 96% rated it as excellent /good
  • 93% had accessed our research related information. 100% rated it as excellent/good
  • 29% had used our phone / email support service; 19% had had a face-to-face service. 78-93% gave them high positive ratings in terms of helping them achieve different outcomes, such as being better able to manage the condition
  • 20% had attended information events; 28% had attended social events. 86-100% gave them high positive ratings in terms of helping them achieve different outcomes, such as reducing isolation
  • 11% had used our Peer Support / Ask a Question service.
    80 – 90% gave them high ratings in terms of helping them achieve different outcomes, such as being helped emotionally

You rated services to be of most importance as follows:


% rating this as very important

Advocacy for Drug Treatments


Information Publications


Research-related information


Campaigns / consultation information


Phone / email support


Work with SMA Europe


Face-to-Face Outreach


Funding of the Patient Registry


Peer Support / Ask a question


Information event


Social event


You told us that if we have additional capacity over and above providing our core information and support services, you would rank the following 4 options, when weighted and totalled, in this order:

Additional capacity options

Weighted and totalled ranking

Equipment grants


Small grants


Information events


Social events



Your many comments have all been carefully collated and continue to be considered – along with all the other much more detailed information we now have from you. You have already given us lots of new ideas.

We are, though, very aware that for many people ‘yet another survey’ is just one ask too many. Thinking about all the families on our ‘Inspirations’ mailing list alone (and that isn’t everyone with whom we have contact by any means), we only heard from 8.7%. So, although all this information is invaluable we are also continuing to collect views and feedback from people with whom we are currently working.

Professionals Survey

Not surprisingly, ‘yet another survey’ and workload pressures led to only 14 replies. Considering the numbers on our ‘Professionals Update’ mailing list, that is only 3.8%. Not all professionals with whom we have contact are on this mailing list. It tends to be for professionals who are very involved in working with people with SMA so that they can point people to our up to date information and research summaries and know what services we can offer. So overall we really only heard from a handful.

Apart from one, all the responses were very positive. It was clear from the one negative professional that they did not feel we were delivering training to professionals working directly in therapy / medical roles with people with SMA. This is a misunderstanding of our aims and is not something we seek to do but is something we have been delighted to see Muscular Dystrophy UK supporting.

Our support to professionals is principally to inform those who have never come across the condition about what it means for an individual or family, and to accept referrals from them or to work jointly to ensure the individual /family gets the support and services they need.

Again, we continue to collect further feedback from professionals as we go about our day-to-day work and all the comments will be carefully considered as we move forward.

If you would like to see the full statistical results and anonymised comments, please contact us at