What Families Want & Need Following Acquired brain Injury by Sue Jackson

By Sue Jackson

I was summoned out of sleep by a ringing phone at 2am one morning to be told to get myself to the hospital where my husband was in A&E after a fall which had caused a serious brain injury. Fifteen years on, I still think about it — after all, while I wasn’t the one that fell and damaged my brain, the change to my husband was significant in ways that affected me and our life together. Looking back, what strikes me most about that time are the differences between what I wanted and what I now know I needed that would have made things more bearable in those early days.

For instance, I wanted some sense of certainty — to understand the care pathway that my husband would follow while he was in hospital and some sense of what would happen when he returned home. What I have now realised I needed was to learn how to deal with the uncertainty that comes with having a loved one with an acquired brain injury. I wanted someone to sit down with me and explain what was happening, but at 2am, overworked and exhausted healthcare staff aren’t going to do that. Left to myself, what I really needed was someone to point out that I’d just had a massive shock, that I needed to look after myself, to take things steady. At the very least I needed to be told to take the next few days off work and be kind to myself while I worked things through.

Once I’d given the staff the information they needed about my husband, they told me to go home. I was allowed to see my husband on the ward for a few minutes the following day, but I wasn’t allowed to visit him again till the hospital said so. They wanted him kept quiet and they didn’t want to talk to me about what was happening. Waiting for news is the hardest thing of all, especially in the absence of any useful information from the staff about what might happen. Left in a vacuum, I had nothing to tell his friends and family either, so we were all very stressed and distressed with no way to know what was best to do for ourselves or for my husband.

I wanted help and support from my friends and family, but they had no more idea of how you care for someone after a brain injury than I had. What I needed was some professional support to help me to recognise and process the trauma my husband and I had both experienced, and to navigate the flood of grief from having to deal with so much change all at once. I wanted the healthcare professionals to help me. It compounded the shock that I’d experienced when I realised that they weren’t going to help me learn how to help my husband. But that meant that when he left hospital, I had no-one to check in with about whether I was doing things right, especially since his GP also lacked any experience with brain injuries. I was given a lot of responsibility, and told that if I got things wrong, the consequences for my husband could be catastrophic, but my lack of training and knowledge meant I lacked credibility in my husband’s eyes which meant he often refused to co-operate with me. What I needed was to be integrated into his care team with professionals to back me up — something like the health visitor system for new babies.

Our NHS is in a bad way, but addressing my needs in the immediate aftermath of my husband’s brain injury wouldn’t have taken much time or money and would have meant I wasn’t left wanting impossible things. For example, a leaflet telling family members the essentials about what happens when you have a loved one in hospital with a brain injury that also tells them how to spot the signs of (delayed) shock in themselves. There should be something that tells you who the staff are and who you can talk to and ask questions of. It would be even better if there was a member of staff with responsibility for communicating with the family. There should be better preparation for discharge with the family included in the decision-making and a proper assessment of the patient’s needs and how these are going to be met once they’re back in the community. There should be some on-line resources for the family about what to expect after a brain injury with links to relevant charities such as Headway. Small things, but those small things would have made a big difference to our family after my husband’s brain injury.

Thank you to Sue Jackson for this powerful blog post. In the absence of information from healthcare professionals, if you are a family member who has been affected by a recent brain injury, click here for some resources available through Headway UK: https://www.headway.org.uk/about-brain-injury/individuals/hospital-treatment-and-early-recovery/