Co Down mum backs new report calling for more support for children with brain injuries
Families with children who have acquired brain injury need more support than is currently available, research has found.
A study to evaluate the Family First Project has shown that demand for the service was almost double what had been anticipated.
It has been claimed that the service, run by charity Brain Injury Matters, is transforming the lives of families across Northern Ireland.
One mum who has used the service said it has been a lifeline to her son, who has sight problems and a learning disability believed to be linked to a serious infection he suffered when he was just seven months old.
Clare Walker (40), from Moira, Co Down, said the project has been invaluable in allowing the whole family to connect with other people affected by acquired brain injuries.
The mum-of-two explained: "We found out about the Family First Project quite by accident and it has been really helpful.
"My sister works in the Royal Victoria Hospital and she knows about Brain Injury Matters and said we should contact them - other than that, we wouldn't have known anything about the programme.
"Really it should be offered to all families with a child with an acquired brain injury because it has been so useful to us."
The Walkers have enjoyed time with other families with a child with an acquired brain injury thanks to the project.
It also prepared Clare and her husband David (39) to talk to their son, who is now 12, and explain to him about the challenges that he faces on a daily basis.
"As Josh got older, he started to ask questions about why he was different, why he couldn't do things as quickly as other children in his class," explained Clare.
"We were able to sit down and explain everything and I think that really helped Josh; there was a reason for the difficulties he has, that he isn't stupid or useless.
"The health service is so overstretched and there really isn't any support or advice. When Josh was diagnosed with an acquired brain injury, we didn't really get any help, which is why the Family First Project has been so important.
"It should be made available to all families in our position."
Clare was speaking out to coincide with the launch of an evaluation report of the programme.
Launched in 2015 by Brain Injury Matters in partnership with the Belfast Health Trust and funded by the Big Lottery, the evaluation report has revealed the overwhelming demand for the service.
Highly skilled practitioners work extensively with parents, children and siblings in the family home and local community to provide an individualised, needs-led service.
This ensures that families are equipped to take steps towards a positive future, enabling the entire family to better manage the impact of acquired brain injury on daily life and helping them to reach their full potential.
According to the report out today, 57 families were referred to the project in the first three years of its existence - almost double the 30 families targeted at project proposal.
Dr Chris McCusker, who authored the report, said: "There is a growing body of research which highlights that outcomes for children with any chronic illness or disability, including brain injury, are determined as much by the resilience and coping of families as by the severity of injury or even treatments.
"Bolstering family resilience has resulted in improvements in understanding, coping, family relationships, well-being and quality of life for families, siblings and, most importantly, the child now making their way in the world with an acquired brain injury."
Brain injury is the leading cause of acquired disability in childhood and can happen for a number of reasons, including birth trauma, an accident, stroke or infection.
It is often an invisible injury but presents physical, emotional, mental and educational issues, as well as problems with social functioning and relationships.
If an acquired brain injury occurs in a child, some of these difficulties may not become apparent until some years later as the brain continues to develop.
Without early intervention and rehabilitation, children with acquired brain injury are at an increased risk of escalated problems and difficulties in their adult life.