Anyone in any place at any time can suffer the trauma of a brain injury. It can happen in seconds and change your life forever. Between 10,000 and 13,000 people are estimated to acquire a brain injury in Ireland every year and yet astonishingly this country still does not have an appropriate national strategy in place for neuro-rehabilitation services.
Acquired Brain Injury Ireland (ABI) is Ireland’s provider of community based neuro-rehabilitation services for people who have acquired a brain injury. Yet the outstanding work done by this organisation can only help so many individuals to successfully rehabilitate. As well as providing neuro-residential services, much of this organisation’s work is done in the community supporting those with acquired brain injuries and their families.
Lucia Power, ABI Ireland’s Regional Manager for the Mid West and South tells Mary O’Brien that there is a real lack of resources and awareness in Ireland.
“A National Rehabilitation Strategy was written in in 2012. It’s a fantastic document, very ambitious but it’s sitting on a shelf and has never been implemented,” says Lucia. “People deserve proper rehabilitation. There are young people with brain injuries being placed in nursing homes because there is nowhere else for them to go. It’s tragic.”
“And there is nothing for children. If your child falls off his or her bike in the morning, gets a knock to the head and suffers a brain injury, the only service available is the post acute service in the National Rehabilitation Hospital (NRH) in Dún Laoghaire.”
Every brain is different so every brain injury is unique to each individual affected. ABI Ireland champions the Individual Rehabilitation Plan (IRP) for people with a brain injury, helping them rebuild their lives through a range of services.
“We have a great working relationship with the HSE locally,” says Lucia. “We work with very good people and it’s very much a team approach. Where there is a lack of services, the HSE in West Cork has been very creative. Bantry Hospital is a fantastic resource and doesn’t get enough credit.”
“Unfortunately we don’t have enough neuro-residential houses,” explains Lucia. “My role covers five counties and we have only four houses in that area. If you have a dramatic brain injury after an accident and want to go to a post acute service or rehabilitation hospital you have to travel all the way up to Dublin and there is a long waiting list for the National Rehabilitation Hospital. It’s very hard on the families, they are left coping and it’s a lonely world trying to navigate the system, very isolating.
“People don’t really understand brain injury until it’s on their own doorstep. Sometimes the individual with the brain injury may have no problems physically, it’s all cognitive difficulties —thinking, behaviour and so on. The individual may have a completely different personality on returning home.”
The McCarthy family from Ballingurteen was this year on the receiving end of the fantastic support offered by ABI Ireland and also Bantry Hospital. In appreciation, the family fundraised a total of €8,800 and presented two cheques for equal amounts, €4,400 to ABI Ireland and €4,400 to Mental Health Ireland.
The eldest of eight children, Tadhg McCarthy moved to the US when he finished college in the eighties. A computer analyst with two teenage children, Tadhg went into hospital in the US in January of this year with a digestive problem. In the middle of the night he pulled out a tube in his sleep and subsequently suffered cardiac arrest and a deprivation of oxygen to the brain. Unconscious with no response to any stimuli, the prognosis wasn’t good. But two days later Tadhg opened his eyes and started blinking. “He went from being at death’s door to being able to sit up,” explains his brother Gearóid. Tadhg was transferred to a rehabilitation unit in North Carolina where he learned to walk again with a walking aid. After being discharged from the Centre in late February, on the advice of the medical team who felt that he would make better progress being around close family and friends, Tadhg’s family brought him home to Ireland.
“He moved back in with our parents and we made out a schedule with each sibling spending at least one night a week with him,” explains Gearóid. “While it was good for him to be around family and friends, it was a struggle to access any services here. It was difficult for our parents to watch his every move 24 hours a day. Tadhg suffered from disorientation and woke up in the mornings thinking he had to go to work. He couldn’t retain memories and had to be reminded about things constantly. In the end, we made contact with ABI Ireland and Tadhg was offered short-term respite care by Bantry Hospital.”
Gearóid and his family were stunned at the lack of services available to people with an acquired brain injury in Ireland but also by the support and service offered by ABI Ireland working with such a lack of resources. “They gave us reassurance and advice on what the typical behaviours are for someone with an ABI and how to deal with them. We were blown away by the help they gave Tadhg and us as his family and it was an easy decision to do our best to raise funds for such an amazing service,” says Gearóid. €5,500 was raised at a coffee morning alone in Bealad, with people travelling from all over West Cork to support the cause. “The lack of services for anyone with an acquired brain injury needs to be highlighted and something needs to be done to address this shortcoming. Seven years ago there was absolutely no services in West Cork. Now we have something but it’s not enough”
Tadhg, who turned fifty this year, is making a recovery and slowly but surely getting physically stronger and starting to retain memories for longer. He has moved back to the US to be close to his children and has a live-in carer and access to appropriate rehabilitation services there. “He’s very grateful for the service and respite care he was given here in West Cork,” says Gearóid. “He realises now how bad he was and how far he has come. He keeps a diary, which he trusts and reads every day and the expectation is that in a year or so it may be possible for him to return to the workplace again.”
“Being in your own environment and your own community is very important in recovery,” says Lucia. “Rehabilitation is a right not a request. We have one residential house in Macroom for the entire population of Cork and Kerry. It’s not enough. A brain injury can hit any one of us at any time.
“There has to be a national strategy for the proper development of services, but in the absence of it people have been very creative. The HSE in West Cork is super but doesn’t hold the purse strings nationally.
“For appropriate rehabilitation you need a proper environment. Staff need particular training and expertise in-house to help people get back their independence.
“When we get a referral, we collect all the information, go out and do an initial assessment and look at what can be done for the individual,” explains Lucia. “For some, we’d recommend residential and for others, we look at a community rehabilitation programme. We look at what an individual can and can’t do. For some individuals it’s about going back to the basics of even relearning how to make a sandwich. The important thing with brain injury is consistency because the brain is in recovery, they’re relearning and you don’t want to confuse them.”
ABI Ireland also facilitates group work and peer support. “There is nothing like talking to someone who has been through the same trauma and laughter and humour is so important in rehabilitation,” says Lucia.
ABI Ireland looks at the strategies that can be put in place so an individual can lead a full life. “For instance if someone has a memory problem, you get them to use a diary, if it’s physical we look at different kinds of exercises,” explains Lucia. “A big part of our role is trying to find these strategies to support people to live a meaningful life.
“Families can automatically go into caring mode, which is very hard for the person with a brain injury. Suddenly the person is back at home and being cared for and roles and dynamics in the family have changed. There are all these emotions. I’ve heard so many clients say, ‘I feel a hindrance to my family’ and that’s a very lonely place to be. It’s so important that people can still be a husband or a mum or dad. But the person that was, often gets lost.
“After acquiring a brain injury people often lose their friends and that becomes a real disability. We work with a man in a nursing home and his friends are the one constant in his life. They take him out twice a week and he just comes alive. He’s one of many who shouldn’t be in a nursing home and we’re fighting for people like that all the time.”
People with an acquired brain injury can make a full recovery. “We’ve seen huge successes with appropriate rehabilitation,” says Lucia. “And families are part of that rehabilitation process. It’s a huge adjustment for them and we offer families emotional and practical support helping them to understand why the person they knew is now so different.”
There is a real lack of awareness in relation to brain injuries. “Don’t judge at first glance,” says Lucia. “If someone’s speech is slurred or their balance is off, both could be consequences of a brain injury. One client of ours, a lady with epilepsy, often falls in her local shop due to a seizure and wakes up hearing people saying to leave her alone, that she’s only a drunk. Epilepsy is a very common consequence of an ABI.
“Adjust how you treat people and take the time to listen but don’t treat someone with an ABI differently,” says Lucia.
ABI Ireland has developed and recently launched a concussion app, with sponsorship from Medtronic. The app is designed to help coaches, team physicians, parents and other qualified healthcare professionals recognise and respond to a concussed player following a knock to the head.
“People forget that concussion is an injury to the brain,” says Lucia. Fifty-one per cent of surveyed GAA players reported returning to play less than 24 hours post-concussion. “The more knocks to the head you get, the more difficulty you’ll have in later life and concussion has also been linked to depression. We’re delighted that associations like the GAA and IRFU are talking about the consequences of concussion and putting preventative measures in place. It’s a positive step for the next generation.
“It’s so important that people wear their helmets,” says Lucia. “We have two clients in our residential services that didn’t, and they are now dependent on support. They’re both in wheelchairs and have speech difficulties. They now use their experience to warn others.”
Being born with a disability is very different to acquiring it, according to Lucia. “If you’re born with a disability it’s something you’ve always known; suddenly losing a job, relationship, role as a parent — that’s an awful lot of loss. In five minutes you lose all those things, you lose your identity.”
For more information on ABI Ireland or to fundraise or donate please go to www.abiireland.ie.