The Support & Outreach Service
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.
At SMA UK we have a small Support Services team who’ve been supporting families with children and young people who have SMA, adults who have SMA, and those who are bereaved by SMA, for many years. We do this by email, phone, text and outreach home-visiting* anywhere in the UK, it doesn’t matter where you live.
*As of March 2020, due to the 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 normal.
You or your child may have had a recent diagnosis which has come as a shock and can be very difficult for everyone involved. Though we don’t provide a medical service or medical advice (which must come from your or your child’s medical team), we can offer you emotional support, practical advice and guidance. You can read more about the support we can give you here.
You may be a parent / guardian who’s further down the line, perhaps thinking about, for example, primary or secondary school options, making applications for benefits or considering housing adaptations; we’re happy to support you as you grapple with these or any other challenges.
Or maybe you’re a young person. You’ll hopefully already have adults around you who you feel comfortable talking to - like your parents, someone at school, or maybe a member of your healthcare team. If you have questions or want to talk things through, you can also contact us and we can be in touch. We’re able to listen and suggest options, and can share ideas about what other young people have done and how. If you’re under 18, we need to ask for your parents / guardians' permission to support you. Sometimes we may also suggest other organisations or groups which might be able to offer you information and support; it’s entirely up to you if you want to look into any of these.
If you’re an adult, you might for example be facing your PIP review or Social Care Needs Assessment, or wanting support to access specialist equipment or facing other challenges. Again, if you have questions or want to talk things through, we can be in touch.
If you’re bereaved we can provide support and outreach, if and when wanted – you can read more here.
If you are: a parent / guardian of a child who has SMA; an adult who has SMA; bereaved by SMA, you can phone us on 01789 267520 ( Mon-Thurs, 9am-3.30pm; Fri 9am-1pm; closed on public holidays) or contact us here.
If you’re a young person under 18 years of age looking for support and outreach, please contact us here.