Twenty years ago, most head injury victims would have been lucky to receive a few weeks' treatment on an intensive care ward before being turned out and left to fend for themselves. And while there have been huge advances in medical care over the last two decades, only now is it being recognised that this life-changing condition needs long-term treatment of the resulting mental - as well as physical - trauma.
The consequences of brain injury are huge - not only for the victims, but for family and friends. Head injuries have a profound effect on loved ones, with more than half of marriages breaking up as partners buckle under the stresses and strains of living with a virtual stranger.
While patients, who are frequently the victims of road accidents, may feel lucky to be alive, specialists believe the NHS fails to recognise the importance of rehabilitation in helping them rebuild their lives. Indeed, widespread ignorance about the nature and extent of head injuries was earlier this year described as a scandal by the Commons health select committee - a scandal, it claimed, that was blighting the recovery and lives of thousands of patients. All too often, patients were discharged from hospital without specialist follow-up care.
This sub-standard service is not universal, however. Standing in stark contrast to the general picture is the work of the Brain Injury Rehabilitation Trust (Birt), Europe's largest provider of long-term rehabilitation services, which last week celebrated its 10th anniversary. With more than 500 staff working at specialist centres and in community services, the trust helps people regain as much of their independence as possible by improving their social skills and functioning.
Each year, about 1m people go to casualty departments for treatment for brain injury; 13,000 of these injuries are serious, requiring continuing support. In addition, there are 135,000 people who need round-the-clock care. For many, mood swings, memory loss and inappropriate behaviour are typical. Discharged without being taught skills for a new life, they require constant care. Yet research by Birt has shown that rehabilitation can lead to a saving of £1m in care and medical costs over the lifetime of an individual.
For Martin Ruck, rehabilitation saved him from becoming another human tragedy. It was in 1989 that the then 16-year-old was flung from his moped in a traffic accident. Taken to hospital with an injury to his frontal lobe, he was left unable to walk, talk or even feed himself. His mother despaired as her son, whom she had brought up almost single-handedly, failed to recognise her. Six months later, his speech had progressed to "yes" or "no" answers, but there seemed little chance of further improvement. Now 29, however, he works for supermarket chain Asda, enjoys gardening and hopes eventually to live in his own flat, having spent the past 10 years at Birt specialist centres.
Ruck is currently staying at a supported house near Colchester, Essex. With the support of his keyworker, he goes to work and find ways of remembering important appointments. "I've lost my short-term memory," he says. "Matt [his keyworker] helps a lot. He gets me to write things down and he takes me to places and asks me if I have been there. I have found both things really help. I am really looking forward to having my own flat though."
Watching her son gain some independence is something Christine Ruck thought she would never see. "At one time, I could not imagine him moving from the hospital bed," she says. "Hospital staff spent six months getting him walking and then he was discharged and came home.
"In many ways it was like having a different person in the house. Like other people with brain injuries, he suffered from mood swings and can be very bad tempered. He could fly off the handle at anything. He suffers from short-term memory loss and cannot concentrate on anything for any length of time.
"As I was working, I had to find somewhere for Martin to stay during the day. He spent months staying in centres for mentally and physically handicapped people, because that was all there was. But it was completely inappropriate. It was very frustrating for Martin. About 18 months after the accident, we found Birt, which has done a huge amount to help him."
Birt, part of the Disabilities Trust, opened its first centre in Milton Keynes in 1991. Seven others have since followed. Throughout, the focus has remained the same: helping people achieve independence. To that end, care staff are called "therapy assistants" - an acknowledgment of their crucial role in enabling clients to become independent. Unlike traditional care assistants, who provide hands-on care, they adopt an enabling role, standing back and prompting clients when necessary.
Typically, this involves developing systems to help an individual overcome memory problems. This could be as simple as a combination of lists, diaries, charts and electronic organisers.
Other strategies may be employed to help individuals control their behaviour. "People with brain injuries tend to become angry very easily," says Mike Oddy, Birt's head of clinical services. "They may also say inappropriate things because they are not able to monitor their own behaviour. We may devise a strategy and sequence for an individual to help them become aware of when they are in a situation that will result in them being angry.
"This could involve counting to 10 and recording the frequency of outbursts and getting them to record these and decrease them to reach targets. We often get the client's family to help. This may involve avoiding situations where the person becomes over-stressed."
Oddy says it costs about £2,000 a week for a place providing residential rehabilitation. This is about 40% cheaper than the £500 a day cost of an NHS hospital bed. Most people spend between six months and a year at a centre, after which they may have the skills to develop a new life. Fees are paid for by health authorities, social services or clients' compensation claims.
"Residential rehabilitation requires longer periods than most hospital admissions," says Oddy. "But we have looked at the outcomes of patients and the difference rehabilitation makes to their independence. And there is a huge reduction in the amount of care required following treatment.
"We have found that a physical disability is a handicap, but people often find a way around it. But a cognitive disability affects all areas of an individual's life. Poor memory affects everything from casual conversation to ability to work. Improving a person's cognitive skills has a massive impact on their life."
Andrew Worthington, a consultant neuro-clinical psychologist who works at Birt's Birmingham centre, is building on existing research on the savings generated by rehabilitation of brain-injured patients. In other research he also hopes to discover what factors influence quick recovery. This will examine the strength of family support, psychological factors and the severity of the injuries.
"We hope to open up the black box and examine the processes by which change is achieved," Worthington says. "We know it works. Hundreds of people are being helped to lead independent lives. Thousands more could be helped too."
For Christine Ruck, who is looking forward to spending Christmas with Martin, the evidence is there for all to see. "We are among the lucky ones," she says. "I just wish we had found out about the treatment sooner. It has been a real struggle."
· The Brain Injury Rehabilitation Trust is on 01444-258377 or at www.birt.co.uk
