Signs of head injury may not be noticed until long after the accident occurs. Sylvia Thompson reports
Advances in medical and surgical techniques and approaches have meant that many more people are surviving accidents which up to recently would have been fatal. Although they have suffered serious head injuries (usually from a road traffic accident), these individuals - the majority of whom are young men - go on to have a normal lifespan.
Putting in place long-term health and educational supports is a growing problem that is requiring new ways of thinking among health and educational professionals.
"The problems associated with those affected by acquired brain injury - three-quarters of whom are between 18 and 35 and are male - have been described as the silent epidemic as people may often look fine but can have many problems which mean that they cannot resume their previous lives or even return home," says Ann O'Loughlin, social worker at the National Rehabilitation Hospital in Dún Laoghaire, Co Dublin.
"There is also no organised system for following up on children who sustain a head injury and are let out of an acute hospital," says O'Loughlin, who was one of the organisers of a conference in Dublin last week which looked at the range of learning, developmental and behaviour problems following a head injury.
Dr Mark Ylvisaker, professor of communication disorders at the College of St Rose, New York, who addressed the conference, says one of the difficulties is that problems don't necessarily show themselves immediately after the accident.
Previously it was thought that the younger the child sustained a head injury, the less likely the long-term damage. Now, however, experts believe that so-called 'sleeper effects' only come into play as certain developmental stages are reached.
Ylvisaker explains: "There are hidden impairments which only appear with the development phase that is associated with a particular function. So, for example, if a three-year-old has a traumatic brain injury, the effect might only be seen at age six when the child has difficulties receiving and following instructions. Also, if a child is 12 when he is injured, he might be thought to have a psychiatric condition at 16 or 17 if the effects of the brain injury are not recognised," he says.
Ylvisaker explains that although improvements to brain scan technology make it possible to see more damage, tearing of nerve fibres can be missed by both CT (computerised tomography) and MRI (magnetic resonance imaging) scans.
The lack of neurological evidence can also lead to under-diagnoses of mild acquired brain injury following head injuries.
"Mild acquired brain injury in particular is sometimes under-diagnosed and a child or adolescent can end up with another diagnosis, for example, attention deficit hyperactivity disorder [ADHD] a few years later. What happens is that a teenager who finds he can't manage when he goes back to school will cover up his difficulties and misbehave rather than admit not being able to do the work. This can cause further damage to self-esteem and such individuals can get depressed because they know something is wrong," explains O'Loughlin.
"It's important to check the medical history of teenagers who suddenly exhibit problems with attention, unusual mood swings, impulsive behaviour or personality changes," she adds.
Ylvisaker suggests that Irish hospitals could embrace the red flag system which is currently used in hospitals in the state of New York. This involves hospitals giving parents and schools a checklist of behaviours to keep an eye out for.
"Testing won't identify the children with difficulties but the real world of school will. With the red flag system, a nurse will talk to the family when the child is going home, encouraging them to be watchful for a period of weeks or maybe months. Then, when a problem is identified, a red flag goes up and the child or adolescent is given extra support or concessions for the time required," he explains.
Another issue for those who have a more severe acquired brain injury is the lack of or inappropriateness of some of the educational and health services available. Jerry Mahon, chairman of Bri, the Brain Injury Advocacy Association, co-organiser of last week's conference, says, "There is a growing awareness that acquired brain injury is a standalone condition that needs a separate response. It affects people differently and there is a need for an individualisation of response."
Mahon believes that defining some behaviour problems of those with acquired brain injury as mental health disorders has led to a level of frustration among those with acquired brain injury. Seeing these individuals as having the same needs as those with congenital physical or sensory disabilities has also led to some professionals dealing with their problems inappropriately.
"Following the acute stage of rehabilitation, there is a very slow rate of recovery over a longer period and there is a great need for education that behaviours exhibited may have underlying causes," adds Mahon. He sees the appointment of a brain injury development worker in the Midlands as a step forward.
"Without a managed care plan for each individual, people are left to meander around and look for services, the success of which depends on the strength or resourcefulness of the family."
One of the biggest issues for these young people who have acquired brain injury is loneliness and lack of access to the usual social outlets.
"Some of them will show a lack of judgment in social situations. They will interrupt you when you are talking. They may have some physical disabilities, problems with their balance or other cognitive-behavioural problems but what parents worry most about is when they do not have friends," says O'Loughlin.
Mahon adds, "So much is still unknown about acquired brain injury that clinically declaring things in a graphic way can limit possibilities.
"What professionals need is an eye on the big picture but a focus on the details. The most important thing is to leave the person and the family around them with hope."
Bri, the Acquired Brain Injury Advocacy Association, can be contacted via the National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co Dublin. Tel: 01 2355000 or email briassoc@eircom.net