Spinal cord injury – vital support for family members
How Back Up provides vital peer support to family members of people with spinal cord injury
Every 4 hours someone in the UK sustains a spinal cord injury. It can happen to anyone at any time, and can be caused by a car accident, sporting injury, a fall or even a stroke.
At Back Up we know that spinal cord injury affects not just the individual, but the whole family. Living with spinal cord injury is an entirely different way of living, and helping the family come to terms with the changes can be incredibly challenging. It’s always hard to ask for help, especially when you think you don’t deserve it and we know it’s not uncommon for family members to experience overwhelming feelings of guilt, helplessness, confusion, anger and isolation. On top of this many people can find it can be extremely difficult to talk to others about what they’re going through if the person they’re speaking to hasn’t gone through a similar experience.
We developed our family support and mentoring services in 2010 to show family members that they are not alone, and that it is possible for a full life to be lived after spinal cord injury. The service, like all those at Back Up, is run by our fantastic volunteers who are parents, partners, siblings and children of people with a spinal cord injury. This places them in a unique position to share advice and offer much needed support to others in a similar position on all sorts of different topics like sex, relationships, emotions, employment, managing personal care (bladder and bowels), pain, or anything else related to spinal cord injury. Our mentors know what family members are going through, because they themselves have gone through a similar experience.
The service is tailored, matches are based on the support the family member needs. This information comes from their initial consultation with the Back Up family support team. Once matched, the mentor’s role over 10 weekly phone calls is to listen and help their mentee work out how best to move forward and adjust to life with a spinal cord injury. All conversations are confidential except if there is a safeguarding concern about serious harm to the family, or someone else. Furthermore, to ensure anonymity mentor phone numbers are not shared with their mentees.
Like many other businesses and charities, the coronavirus has forced our services to adapt. Our family support and mentoring services are no different. At the start of the pandemic spinal centres across the UK were closed to visitors. This left many family members unable to visit their loved ones, and many newly injured people sent home earlier than normal for their safety. We are still unable to visit centres ourselves and provide our patient education sessions on topics such as bladder and bowel management, skin care, and managing pain. Moreover, people may be sent home early to homes that have not yet been adapted to their needs.
You won’t be surprised to hear that because of the issues above we’ve seen a higher than normal demand for our family services. Our mentors have told us that their weekly phone calls are now not only about goal setting, and concerns surrounding appropriate levels of care, but also used as a check in measure to ensure their mentees are looking after themselves too. One of our mentors, Sam, thinks these wellbeing chats are just as vital and can be beneficial to mentors and mentees ensuring that she too practices what she preaches.
To continue to support as many people as we can we launched the Back Up Lounge, an online forum open to everyone affected by spinal cord injury where no conversation topic is off-limits. We’ve been running this service since May and every week we have a dedicated break out room specifically for family members. The lounge is more lighter-touch than our traditional mentoring service, but still offers the opportunity to talk to like-minded individuals going through similar experiences. What makes the lounge truly special are the repeat attenders, they are finding that they are helping each other grow in so many unexpected ways, maintaining a fun environment during a challenging time.
The pandemic has been a difficult time for everyone, and the intensity and frequency of the calls to all of our services reflect this. As well as our dedicated support for families, we offer a wide range of services for people with a spinal cord injury. Whether their family member is looking to find out more information about returning to work, improving their wheelchair skills or just looking to speak to someone in a similar situation, Back Up is here to help.
