Brain injury care: time for a rethink
28 Feb 2003
Each year, more than a million people in the UK sustain some form of head injury. The majority recover while some have severe long-term problems. But experts warn that those in between are being neglected.
Any problems, however, are not always immediately obvious because 90 per cent of people make a good physical recovery. Once they are up and about, friends, relatives, loved ones and, sadly, medical and social services can often assume the problem is dealt with.
But the truth is quite often different. The brain is a delicate and complex organ, and any damage can result in significant “invisible” problems. These include personality changes, slowness, poor memory, irritability, bad temper, tiredness, rapid mood changes, tension, anxiety, threats of violence and depression.
While anyone who has had to look after someone recovering from a moderate brain injury will tell you these emotional and cognitive problems are par for the course, it has been an uphill struggle to persuade government and the health service of the need for continued support and rehabilitative help.
Gaps in the system
One of the main organisations offering support is the brain injury association Headway. The charity began in 1979 when it became apparent that people recovering from brain injuries had no support once they left hospital.
There has been progress – a House of Commons Health Select Committee report and an NHS National Service Framework specifically on the issue – but today Headway still represents the main source of help and advice about brain injuries.
“It’s getting better – slowly,” says Headway spokesman Graham Nickson, “although it’s almost a postcode lottery when it comes to help. We still need better social and medical care and more resources attached to it. Social services certainly need to be more aware.”
The level and kind of support varies from person to person but often they just need to know that what is happening is normal. “Social support is very important,” says Graham. “People need to know they are not alone and that help is out there.”
The ideal scenario is a “pathway of care”, he says, so people (including those looking after the patient) aren’t cut off as soon as they return home. This could vary from helping people return to work to checking on them at home, or enlisting them for courses to deal with amnesia or memory loss.
This flexible approach is strongly supported by Dr Lynne Turner-Stokes, director of the North-West Thames Regional Rehabilitation Unit at Northwick Park Hospital, Middlesex. She uses the analogy of a child’s slinky toy to explain the best way to help.
There are different stages of progress on the staircase to recovery, she says. These begin with acute care of the injury itself, through to intensive rehab at the hospital using day-care services, community outreach and home assistance, and finally to drop-in centres.
Dr Turner-Stokes says excellent communication and flow of information from one stage to another is vital to enable the individual to move down the staircase seamlessly. “If one or more of the steps is missing, the analogy still holds – the thing tumbles down the rest of the way and ends up in a tangled mess on the floor,” she says.
It is this mess that most concerns Headway; particularly the effect that a lack of support can have on young people. The charity says brain injury is the most common cause of death and disability in young people in the UK. Young men are more at risk since they tend to undertake dangerous activities and are more likely to be involved in violent assaults.
Figures show that road traffic accidents account for 40-50 per cent of all traumatic brain injuries, accidents at home and work for 20-30 per cent, sports-related accidents between 10-15 per cent and violent assault 10 per cent.
But regardless of the cause, brain injuries can lead to significant problems not only in the following years but also for the rest of people’s lives. “Many injuries are sustained by people between 16 and 24 years old,” says Graham. “And this a crucial time in people’s development when they are forming their first vital relationships.”
Problems such as losing the capacity for planning, concentrating or problem solving, or trouble with communication and, perhaps most disquieting, emotional and behavioural difficulties, can all isolate the individual. Socially inappropriate and impulsive behaviour or bursts of anger or anxiety can lose someone their friends and break up relationships, Graham explains, and this can cause life-long emotional damage.
It’s not just young adults that are affected. A brain injury can force a complete restructure of a relationship, as one half of the couple becomes a different person overnight. Many relationships don’t survive the abrupt change.
One woman who sought help from Headway explained her situation. “We had been married for seven years and had two small children when Frank had his accident. He was in a coma for a week. I remember being elated when they said he was going to live and felt that he would be back to normal in a few weeks. I was wrong.”
Frank was no longer full of ideas and jokes but had become far more lethargic. “Frank has little enthusiasm, is slower, has lost his sense of fun, gets very irritable, and is often preoccupied by his problems,” she explains.
And this has impinged, not only on everyday events, but also on the relationship itself. “I miss his friendship, intimacy, partnership and the sexual relationship that we had. I still love Frank, but in a different way, almost like an elder sister. Life is much harder now because, not only do I have to look after the two children, but I have to keep an eye on Frank.”
Brain injuries can cause stressful and exhausting difficulties for years afterwards but aside from prevention – for example, forcing children to wear bicycle helmets – the most effective way of dealing with the problem is to introduce a support structure.
Gradually, the importance of this structure is being realised across the country, and it will become increasingly necessary as medical advances enable more people to survive from brain injuries that just a decade ago would have killed them.
Department of Health’s National Service Framework for brain injuries
Select Committee report into brain injury rehabilitation