How Support and Outreach Has Helped

Families and individuals share here how our support and outreach services have helped them:

"Outreach support means so much to us, they are so vital, and we feel they are part of our family now. They have giving us so much support from the very beginning when our life had fallen apart, they were our shoulder to cry on and our ear to listen. Then offered words of encouragement and hope. Now after 6 years they know our family so well and we feel are part of it and want the best for us." Parent of 8-year-old

"We would like to thank you for your continued support through my rough times. Hopefully things are smoothing out a bit now, but it really does make a difference to be able to call you / SMA UK. You do a grand job, keep it up!"
Parent of 17-year-old

"I look forward to talking, you have been such a calm, positive, supportive, warm presence since you appeared in our lives." Parent bereaved by SMA

"Talking to you the other day has helped enormously as I didn't have to explain about SMA and how it affects (my grandson) in everyday tasks that other children his age take in their stride, you knew what I was talking about, and that understanding helped. Thank you. I have just spend the last two and a half hours reading through the links and it is a gold mine of information that is relevant to me and my family." Grandparent of 3-year-old

Gurdeep's View

"I have known about SMA UK for many years and it has been a place where I’ve had really good support and advice over the phone. It was a few years ago that I heard, that if I needed, one of the Outreach Workers will visit. This has been really helpful for me. It makes such a difference to have face-to-face contact with someone who understands about SMA and has experience of meeting other people with SMA. Although I have contact with lots of professionals, often they haven’t come across anyone else with the condition.

I have had good support from a local Social Worker but once an issue has been dealt with, such as support to set up direct payments, your case is closed. If I then need more support, I have to be referred again and I’ll probably be given a completely different person. I can contact SMA UK any time. Although I may not speak to exactly the same worker, it’s a small team and they all know about SMA and what information and support might help.

When my current wheelchair (which is now quite old) broke down it was sent away for repair. The charity’s team spoke to the wheelchair company. They explained about SMA and made the repairer understand how urgent it was. That made it easier for me to communicate directly with the repairer. This also helped me to plan with my carers how to meet my care needs when I didn’t have my chair.

I have had such good support from the staff in the charity’s Support Services Team. They helped with a supporting letter for funders for a new powered wheelchair and gave me information about the “bedroom tax”. When the Outreach Worker visited, she arranged a conversation with my local Council which helped me to understand the bedroom tax even more. As a result, we had a meeting with me, the council and the local landlord and the charges were reduced. Lately I have had more issues with my benefits and have had to make a number of appeals. There is no way I would have coped with this process without Outreach Support from SMA UK who explained that I also needed to get expertise from organisations such as CAB and the Community Law Service, supported me to meet with them and continued to support me all they could; which I am truly grateful for."