Navigating brain injury

Brain injury can affect anyone at any age, but an acquired injury can be life-altering and finding the right support is key to help each family cope with the changes that come with an acquired brain injury.

In October 2019 Gregg, who is now 10, contracted Encephalitis, a rare condition which causes inflammation in the brain. This led to an acquired brain injury which left his family desperate for support and guidance.

After spending six days in the hospital, Gregg was discharged, with the family feeling they had no information on the next steps.

SEARCH

“We had a little boy who slept with us in bed then, when he went to his own bed after a week or so, he was very clingy, he was getting up during the night, I couldn’t go to the bathroom alone because he was always with me,” remembers Gregg’s mum Andrea.

“There was no support, we kept contacting the GP and we didn’t get a consultant appointment until February the following year.”

This lack of guidance meant Andrea and her husband David had to search for advice and information while caring for Gregg and his older sibling Lewis. Atthe same time, the family was coming to terms with the effects of Gregg’s injury.

After months of research Andrea found Brain Injury Matters: a charity supporting children, young people and adults affected by acquired brain injury (ABI). An ABI is an injury experienced after birth, such as a fall, tumour or stroke; a traumatic brain injury (TBI) is experienced after there is trauma to the head.

Andrea self-referred to the charity and started receiving support in April 2020, just a month after the coronavirus prompted lockdowns across the country.

Andrea was connected with Meg from Brain Injury Matters (BIM) who helped the family find appropriate strategies and interventions to support Gregg and the challenges the family were facing.

“The telephone calls would have been anything up to an hour or over and she gave us ideas of fun things to do or things to look at online, and other organisations to have a look at,” reveals Andrea.

This support was pivotal in Gregg’s journey and gave Andrea the necessary tools to cope with his new behavioural issues.

“BIM really helped us in getting through the hard bits because we didn’t know how to deal with his anger, his attention span, things to calm him down,” acknowledges Andrea.

UNIQUE

Due to her own family’s experiences, Andrea now highlights the need for better support for families, she says:

“Every face to face, every letter, every call I have said please give parents support when they come out of hospital.”

Brain injury affects every individual uniquely, a factor which makes the right support vital.

“Everyone’s brain injury impacts them differently and a lot of our work is helping the family to understand specifically what it’s like for their young person and why they may act or behave in the way they do, and to then provide strategies to support that,” explains Bridget Smyth, head of children and youth services at BIM.

Considering the whole family, rather than only the person who has acquired the brain injury, will aid their recovery and development.

FAMILY

“Stay strong as a family and support one another, it is really difficult the changes in your child that just happen in a flash,” sympathises Andrea.

The aftermath of an acquired brain injury can take its toll on every family member, staying united is an essential part of this journey.

“BIM were supporting the whole family, asking how our other son was coping with it and ideas for him, and for my husband and I and ideas and how we can cope, it was really inclusive, not just focussing on Gregg but the whole family unit,” stresses Andrea.

The challenges families can face can be immense, including, but not limited to, an increase in family tension, conflict between family members, social isolation and difficulty with adjusting.

The person who has acquired a brain injury might look the same on the outside, but be a totally different person on the inside whether they are a child, young person or adult.

Tui Benjamin from The Brain Charity explains: “The thing with brain injury is it can change your personality so much and that can be very hard for a family member to adapt to.

“If you are someone who has been married for 30 years you might feel like you don’t know your spouse anymore, they seem different and the way they are acting is different, people do really need a lot of emotional support to come to terms with that.”

Families could be struggling with this change, new caring responsibilities, financial issues or their own mental health in the aftermath.

SERVICES

These issues have been exacerbated during the coronavirus pandemic when many support services had to make the shift to online or could no longer run at all.

“People come to us who have a new diagnosis or a recent brain injury, having been discharged from hospital during the pandemic and not been feeling like there’s much support out there,” stresses Tui.

“Their life almost feels like it’s been put on hold but they’re grappling with something potentially quite traumatic that has happened to them.”

In 2020, referrals to The Brain Charity went up by more than 50 per cent in comparison to 2019, leaving the organisation with concerns around mental health, long COVID and unemployment.

The need for online learning in education and the delivery of support via telephone and video calls have also created challenges in the sector, with some vital services missing out.

As the pandemic continues and further into the future, the support provided for families after acquired brain injury has to be increased or the responsibility will continually fall on charities who have limited resources.

If you are looking for family support after an acquired brain injury visit The Brain Charity or Brain Injury Matters.