Lifestyle

Wednesday 3 September 2014

Home is where the healing is

The prospect of life in a nursing home at only 42 was too much for Peter Bradley's family to accept.

Sarah Breen found out how their intervention has revolutionsied brain injury care in Ireland.

Home comfort: Barbara O'Connell and Peter Bradley, who can now manage his life very well

I put forward a business plan and got the HSE to commission us to provide the care on their behalf. They paid for the staff and we fundraised

In March 1980, a week before he was due to sit his final solicitor's exam, 23-year-old Peter Bradley was involved in a motorbike accident and was severely injured. Following surgery in St Vincent's Hospital, Dublin, Peter survived, but was left blind in one eye, deaf in one ear, physically disabled and with little or no memory of life before the accident.

"Peter was a very clever, very outgoing person," explains Barbara O'Connell, Peter's sister, who is co-founder and CEO of Acquired Brain Injury Ireland, an organisation that aims to rehabilitate and support people with brain injuries and provide help to their families.

"He was engaged to be married. But after the accident, his college years were all wiped and he had no memory of his fiancée. She stayed with him for 12 months and pulled him though his coma, but it was very hard when his memories of the relationship were gone.

"As well as his physical disabilities, Peter's concentration wasn't very good and he'd often say things without filtering them first. We know now that these are all normal problems for people who've had brain injuries but it's very sad when the person you love is no longer there.

''He tried going back to college but he'd forgotten everything. He retained his intelligence though. He still speaks fluent French and can hold an intellectual conversation."

"Acquired brain injuries are most commonly caused by trauma, like road traffic accidents," says Dr Mark Delargy, a Consultant in Rehabilitative Medicine at the National Rehabilitation Hospital in Dublin. "They generally affect the male population and people who are working at-risk jobs, like on building sites.

"Then there's the people who simply fall down the stairs at home and crack their skulls. People who have a brain haemorrhage from an aneurysm can also sustain a brain injury. There's the traumatic cause, the vascular cause and then causes from infection and all manner of other problems that can impair the brain in a damaging way."

Unable to return to his studies or hold down a job, Peter travelled to the Philippines where he volunteered in a prison under the supervision of a family friend. Tragically, while there in 1992, he suffered another head injury as the result of a car accident in which he was a passenger.

"After a long series of events, Peter ended up in Beaumont Hospital," says Ms O'Connell. When he was discharged from there, at 42, the only place that would take him was a nursing home for the elderly. At that time I was an occupational therapist in the National Rehabilitation Hospital and I knew there were no services out there for people like Peter with brain injuries. I knew he was destined to stay in that nursing home forever.

''It was very upsetting for my family to visit him because he could walk and talk, and was so caring, but he just sat in front of the telly and smoked all day. A person with a brain injury needs to relearn all their skills again. The system didn't provide the support and personnel to help him do that. I decided I wanted to bridge that gap.

"My husband and I came up with the idea that we could convert Peter's house and, with a grant from the HSE, put two other brain injury sufferers in there with him. It was a new model of care where he would be living within a community but we would have a full staff there 24/7.

"I felt it was a service that the HSE should have been providing. I put forward a business plan and got them to commission us to provide the care on their behalf. They paid for the staff and we fundraised for everything else. We actually saved them money because we were taking people out of hospitals and putting them back into the community. It was a win-win situation."

In just six months, Peter's condition had improved dramatically and he was well on his way back to independent living.

Today, he can manage his own affairs with minimum staff support.

"He went from sitting doing nothing all day to using a mobile phone and getting up and out and going into town by himself," says O'Connell. "People function much better in their own homes. The results for the other two men were just as miraculous in such a short period of time.

"The HSE was so impressed they asked if we'd take in another patient, a 16-year-old boy who had been in a locked adult psychiatric ward since he was knocked down by a bus at 12. Again, in just a few months, the results were amazing. And that's how ABI Ireland grew. Over the years, we've opened 15 residences. We've also developed community services and started training rehabilitation assistants to do in-home care and provide support for families."

Unlike a physical injury like a broken leg, which is relatively easily fixed, dealing with a brain injury like Peter's is more complex. Sometimes the sufferer may look and act perfectly normal, but underneath the surface they can be confused, lonely and isolated.

"The brain is the organ that controls everything we do," says Dr Delargy. "It gives us our personality, our competency to live independently and, most importantly, it gives us the chance to understand the nuances of how we're interacting with other people and insight into our own behaviours. All these factors tend to suffer in brain injuries so that people cannot live their lives in the independent fashion that they used to."

Earlier this year, ABI Ireland opened its latest assisted living facility in Drogheda. Like Peter's home, it allows brain injury sufferers to live together under specialised supervision while regaining some valuable independence.

"Assisted living facilities are very important for people with brain injuries," says Barbara.

"They need to live quite a structured life so if you bring a number of people together they form a little community of their own and help and support each other. Often, for them, they don't have the skills to build relationships. They may also have some challenging behavioural difficulties.

"They tend to be irritable and get easily frustrated. In our houses, they learn to cook, clean and function, and for many of them they move on from there. The facility in Drogheda is particularly close to our hearts because it's owned by Derek Crilly's parents.

"He is a well-known Louth hurler who was injured in a road traffic accident over 20 years ago and left partially blind and very physically challenged. His house was opened to four others and he describes them as like a family. They all have their own space and routines, but they're supported by a staff who understands brain injuries specifically."

"If your brain injury is bad enough, you do not live," says Dr Delargy. "In patients who suffer lesser injuries, however, they have a spectrum of recovery from partial to almost complete. It's being able to provide a tailored programme of neurosurgery to rehabilitation to community reintegration that allows people to regain their lives.

"We all need our personalities to engage with other people and retain our friends. And that can be severely affected after a brain injury. You can become isolated. If you don't understand the consequences of your actions, you can get into trouble with the powers that be.

"You can become something of a social pariah and that leads to further disconsolate behaviour, like substance abuse, particularly alcohol in Irish society."

Barbara recently won the Newstalk Social Entrepreneur of the Year Award at the Women Mean Business Conference and Awards 2012 for her work at ABI Ireland but she's adamant there's plenty more to do.

"This is just the tip of the iceberg," she says. "Unfortunately, our health service doesn't value the fact that people with cognitive or behavioural problems are disabled. It's been a huge struggle for us to educate and show that these kinds of interventions really do make a huge difference. We have several new projects in the pipeline at the moment. The first is for people who have had a recent injury, like a stroke, that has left them fatigued and with low concentration.

"We're offering a brand new vocational assessment service called Work 4 You that will keep them in work, teaching them strategies to maintain their jobs, or helping them to go back to work after being out sick. We've also newly opened a 15-bed unit in Tullamore.

''That's the first of our transitional neurobehavioural centres.

"We are running a carers programme, too. Brain injury patients are often discharged from hospital with very little information and their families are left unprepared. We bring them together and share some basic things they can do to make their lives better and easier.

"There are so many people who need us. We're asking the public to please invest in a service that they might need themselves one day."

Donations can be made to Barbara's charity through www.abiireland.com.

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