Do you live in Scotland or Wales? Join our Focus Groups to tell us what support YOU need!
Improving the lives of everyone that lives with DMD is at the core of our work at Action Duchenne. Since the pandemic our All-Through Support programme has changed lives and delivered real benefits to the individuals, the families and the professionals around Duchenne Muscular Dystrophy. But we know we can do more.
We have heard from families we speak to that there are unique challenges faced in both Scotland and Wales. We also acknowledge that at times support for DMD families in the UK can have a heavy England bias. We are on a mission to change this.
You may have seen us send you a survey recently about care standards and issues that you face. The responses have been great and we really appreciate those that took the time to complete. We now want to expand on this and collect further thoughts on what issues matter to you and where we can adapt and create plans to better fit in your location.
Over the next month we will be holding 5 focus groups to speak with you and your community to make sure the plans we have and the issues we see are the ones that mean the most to you.
Attending these meetings will allow your voice to be part of this and improve the lives for people affected by DMD in Scotland/Wales for years to come. Each session will be 45 minutes long and take place virtually on zoom. We have spread these out as best we can to try and accommodate all schedules and busy routines.
The session dates and times are below. To register simply click on the link to the session that you would like to attend.
We will collate and summarise the discussions we have and share it with you, so you can see the results.
Scotland Focus Groups
Wales Focus Groups
As a way of thanking you for giving up the time to talk to us we will enter all attendees into a draw to win a Fortnum and Masons hamper.
We want to get this right, so if the dates don’t work for you please get in touch and we can work out another way to hear from you.
Thank you.
Alex Berbank on behalf of the Action Duchenne support team
Science on Tour 2024 – Oxford