The Road Not Taken – Family and Acquired Brain Injury

The Road Not Taken – Family and Acquired Brain Injury

If we could only be like Dorothy from The Wonderful Wizard of Oz when Acquired Brain Injury strikes our family; just three quick heel clicks, a fervent wish and, in an instant, we’d be back in our old life before it was swept away.

The devastating news of an ABI diagnosis was delivered to over 340,000 families in the UK in 2016-17. And it’s a figure that keeps rising, according to the latest research by the UK’s brain injury association, Headway. But what happens to families when they receive that news? And how does it alter the individuals in the aftermath?

In Dorothy’s journey into the unknown, she’s assisted, of course, by the intelligence, compassion and bravery of a trio of unlikely companions she meets along the way; not a far cry, perhaps, from how Neuro OTs can become ‘expert companions’ to families suddenly faced with a new world involving an ABI survivor.

And it’s not just the therapists; lawyers, case managers and academics can all play a vital role in providing the right support at the right time. But what is the right support? And what are the qualities required to be the best ‘expert companion’?

These and other crucial questions will be driving talks at the 2019 Head First conference, sponsored by Krysalis, in London’s Grange Tower Bridge Hotel on May 16. With the focus firmly on ‘Family Matters’, delegates from a broad range of specialities will be pooling their knowledge to increase their understanding of family needs after Acquired Brain Injury.

This will include factual reports from families themselves, describing their experiences, stating what they need and discussing what works for them.

Some of Krysalis’s own clients have been happy to share their narratives on our own forum, which you can read here: Stories Behind the Cases. It’s certainly clear from their stories: family matters a huge amount in everyone’s recovery.

For Chris, who fell 50ft from a tree, the word family comes to mean security and stability; a source of emotional and practical help and a launch pad for new opportunities to develop in life.

For Penny, whose husband sustained a brain injury after a fall in his bathroom, buoying up the family becomes just as important as helping her husband.

The experts at Headway are also clear on the issue: ‘It has often been said that brain injury affects whole families, not just individuals. Many difficult stages have to be passed through from the initial shock of the news of an injury, to eventual acceptance that things may now be very different from how they used to be - for both the individual concerned and the whole family.’

And each of those stages can present uniquely different circumstances, triggering all manner of responses in family members, including:

• high levels of anxiety and depression;
• decreasing capacity to cope, particularly with emotional and behavioural problems
• feeling isolated or trapped within a relationship where emotional needs aren’t being met, and
• emotional problems in children whose own needs are being neglected.

‘Families need attention, education, guidance and support if they are to survive, regroup and rebuild their lives,’ Headway says.

And our own Clinical Director, Jo Throp, concurs. In her welcome speech at the Head First conference on Thursday, she will tell delegates: ‘For the majority of us, our family provides a foundation of support; they are the compass that guides us throughout the stages of our life. They nurture and inspire us to grow as individuals whilst providing roots to anchor us in a storm. The importance of families can therefore not be under-estimated.’

Further details on the 2019 Family Matters conference are available here on the Head First website.