SMA UK Services

Support and Outreach

Though we hope our website has answered a lot of your questions, there’s nothing quite like being able to talk things through with someone. Here at SMA UK we’re a small team who’ve been supporting adults with SMA for many years. Although we don’t provide a medical service or medical advice (which must always come from your medical team) we do offer emotional support, practical advice and guidance. For example, you might be grappling with your PIP review or Social Care Needs Assessment, or wanting support to access specialist equipment. If you have questions or want to talk things through, our Support Services team can be in touch by phone or Email whenever needed, or can arrange to visit you at home* as we cover the whole of the UK.

* Please note that as of March 2020, due to coronavirus (COVID-19), we have made the decision to not carry out any home visits until further notice. We are, however, able to offer Zoom video calls and our email, phone and text services remain as usual.
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Make Contact With Others / Share Experiences

Again, though we hope you’ve gathered some ideas from reading what others have shared on our website, you might want to join the Adults' Network. It’s been facilitated since 2016 by Martyn Sibley, who has SMA Type 2. Adults in the group raise awareness of challenges faced by adults living with SMA, tackle issues, share their experiences and support each other.

Julian, a member of the Adults' Network, says:

"The Adults' Network keep in touch to problem-solve and share information, as well as to socialise and have a laugh. We have regular video chats between members, we meet up, and also connect via Facebook and other social media.

The Adults' Network is a very powerful tool to help those of us with SMA to get help, or even validation, from others who know what our lives are like. It’s a good way of drilling that kind of knowledge down onto a specific problem to provide proven workable solutions."

You can find out more about the Adults' Network, plus other ways to make contact and share experiences, here:

Page last reviewed / updated: February 2021
Next review due: February 2022