I am the chief executive and co-founder of Acquired Brain Injury Ireland. My colleague, Ms Karen Foley, is head of service operations. I thank the committee for inviting us to present at this meeting. ABI Ireland provides community neurorehabilitation services across Ireland. These include in-home, centre-based and assisted living, along with case management, vocational and family support services.
My brother, Peter Bradley, acquired two brain injuries as a result of a road traffic accident and a subsequent stroke by the time he was 42. While he was capable of managing his own self-care and many aspects of day-to-day living, the only place Peter could get support was in a nursing home. Nowhere could offer him the cognitive support he needed. He was a young man in his 40s who was sleeping through every day. That was 22 years ago. ABI Ireland was set up to provide specialist support to allow people like Peter to live a full life in their own community. Two decades on, we are still fighting that fight. The Ombudsman’s Wasted Lives report states that 1,300 people under 65 are living in nursing homes, many as the result of acquiring a brain injury, which includes stroke. Although slow progress is being made to move some of these individuals out, the beds are being refilled. Nothing has been done to stop the flow of people back in.
The problem as we see it is that the rehabilitation pathway in Ireland is unclear, under-resourced, and underfunded. I am here today to address these issues but I also want to speak about solutions. The national neurorehabilitation strategy, first published in 2011, sets out an "ideal pathway" for those impacted by brain injuries and other neurological conditions. It sees survivors moving efficiently from acute hospital care, through specialist inpatient rehabilitation if needed, and then onto services like ours in the community, as well as primary care. The ideal pathway is supported by a case manager, who is a highly skilled healthcare professional and a single point of contact who provides a personalised service to the person with brain injury, and support and education to their family. The actual pathway, I am afraid, is very different. If you have a brain injury in Ireland tomorrow, here is what you can expect: you will be rushed to hospital, they will save your life and after that, it is a lottery. It is completely dependent on where you live.
For example, John acquired a brain injury as the result of a stroke when he was 40. He was lucky enough to receive acute care, inpatient rehabilitation in the National Rehabilitation Hospital, NRH, and then community-based neurorehabilitation from ABI Ireland. He was supported to move back to his own home. He has recommenced work part time and now contributes actively to his community and the economy. If John lived elsewhere, he may have spent months in the same acute hospital bed. He might be lucky enough to be admitted to the NRH but might still be returned to a regional hospital following the rehab where he could spend many months or even the rest of his life. He could be transferred directly to a nursing home, even if he had no medical or nursing requirements, or in desperation his family might take him home, where they would have no support to understand or accommodate his needs. This is because there are large pockets of the country where no experts are in place to assess what John needs to regain his independence and respond accordingly. Many areas do not even have a case manager to provide one point of contact and specialised support. There may be grants available to adapt a house but no money to pay for a rehabilitation team to support a person to live there.
I said I was here today to talk about solutions.
At Acquired Brain Injury Ireland, we have a pathway in place that could resolve many of the issues raised in Wasted Lives, and we can demonstrate that it works. What we need is for it to be made available to every brain injury survivor, regardless of where he or she lives.
To begin, we need national assessment teams, first, to look at those currently placed in nursing homes or being discharged from hospital, to set out a road map for them to move back to community living. These teams would work with case managers to prevent more and more survivors moving back into nursing homes if they do not need to be there.
To cover the country, €4 million would fund three assessment teams and a further €500,000 would have a case manager in every community healthcare organisation, CHO, area, making up a total of €4.5 million, which is so little when one considers the immediate impact this would have for so many young people and their families. It would not be the full solution, but a good solid start to the long overdue implementation of the recommendations in the Wasted Lives report. This solution would not only support the HSE to reach its targets, but provide significant value for money. It would result in fewer prolonged stays in acute hospitals, freeing up essential beds, reduce the burden of care on families and significantly reduce costs to the State.
We want the committee to hear the lived experience of those who have been inappropriately placed in a nursing home. Our friend and brain injury survivor, Mr. Brian Hogan, was due to join us today but, unfortunately, was unable to be here. Let me tell you about him. In 2009, at the age of 32, Brian, a quantity surveyor, was the victim of an unprovoked one-punch assault. He spent many months in a unit for older people and he always said that none of them could ever remember his name. In an intervention with the HSE, Brian moved back to the community to one of our assisted living rehabilitation houses near Ennis in County Clare, where he is an active member of the community and on the board of Anvers Housing Association using his quantity surveying skills. He is on a journey that proves the power and potential of rehabilitation to rebuild lives.
I would like to share with the committee some of what Brian shared with us. He said that from a nursing home to a rehabilitation house, there is no comparison - the two are completely different things. He said that rehabilitation teaches you how to get your own independence back and you are not just withering away, wasting your life somewhere where you do not belong. Brian can now see a future for himself and that is what rehabilitation has done for him. It has opened the door to the future.
Today is a welcome opportunity for us to give voice to the all-too-often forgotten about young people living in nursing homes. What we need now is urgent action to address their rehabilitation needs and to put in place a comprehensive pathway to bring them back to communities and to offer them a fuller, more independent live. This will take commitment, leadership and resources. I ask those in the room today to work with services like ours to kickstart this change and make it a reality.