FINDING SUPPORT GROUPS AND COMMUNITY RESOURCES
You and your loved ones are joining a larger community of people affected by spinal injuries. Whilst it is not a club anyone wants to join, tapping into that community can provide emotional support, practical tips, and a sense of not being alone.
Spinal Injuries Association (SIA) The SIA is a UK charity that supports SCI people and families. They have many resources, including a telephone helpline, peer support services, and local groups. Their website’s “Knowledge Hub” covers everything from bowel care to mental health to legal rights. SIA can connect you with a peer mentor – someone living with an SCI who can mentor your injured loved one (and sometimes a separate one for family members). They also have regular forums and events to meet others in similar situations. Back Up Trust Back Up is another UK charity focusing on practical skills and support, including for family members. They run wheelchair skills training, residential rehab courses, and even adventures like skiing trips for people with SCI. Importantly, they have dedicated services for the family, such as a family mentoring servicewhere you, as a parent/partner/sibling, can be matched with another family member who’s been through it. They also host “relatives’ days” – group sessions (often online nowadays) where families of newly injured individuals can learn and share. These services are often free. Back-Up emphasises that family members often feel guilt, helplessness, and isolation, and they provide a safe space to talk about those feelings. ·
Online communities SCI has many online forums and social media groups (Facebook, etc.). For example, the CareCure forums or Reddit’s r/spinalcordinjuries can connect you with a global community. People ask questions like “How do you manage to sleep with a catheter?” or “Any tips for travelling on a plane in a wheelchair?” and get answers from those who’ve done it. Be mindful that experiences vary, but discussing with peers is comforting. Local support groups Some regions have local SCI support groups, possibly organised by your regional spinal centre or a charity. These might meet monthly. Ask your social worker or SIA about any near you. Meeting in person (or over Zoom) with others in your area can lead to friendships and sharing of resources (like “which local GP is good with SCI patients” or “which pub in town is wheelchair accessible”). Condition-specific organisations If you or your loved one’s injury has specific aspects, like being injured in military service, Blesma (for limbless vets, though they also help SCI) or Help for Heroes might have programs. If the cause was something like Transverse Myelitis, there are groups for that, too.
23
Made with FlippingBook Digital Publishing Software