30 March 2023

Don’t Save Me Then Leave Me: give me a pathway home

At the World Congress on Brain Injury 2023, we are launching a new campaign to improve rehabilitation services for brain injury survivors in Ireland. We are fighting to give brain injury survivors a pathway home.

Taking place from 29th March to the 1st April 2023, this Congress is the largest gathering of global experts in brain injury and is taking place at the Convention Centre in Dublin.

Speaking at the 14th World Congress on Brain Injury organised by the International Brain Injury Association (IBIA) in partnership with Acquired Brain Injury Ireland (ABII), our CEO and Co-Founder Barbara O’Connell called for an investment of €6 million per annum to meet urgent need.

“19,000 people in Ireland acquire a brain injury each year, and many of these end up unnecessarily in nursing homes long-term. This must end. The slogan of our campaign is ‘Don’t Save Me, Then Leave Me – give me a pathway home’.

“The truth is, in Ireland there is no clear pathway for survivors of brain injury. Once they’re discharged from hospital, their future is in the hands of a geographic lottery – the system is under resourced and under-funded. Assessment Teams and specialist brain injury Case Managers can play a key role in addressing these issues at minimal cost to the State.

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“Today, opening the World Congress on brain injury, ABII is calling for €2m to establish a nationwide brain injury Case Management service and €4m for three National Assessment Teams for young survivors living inappropriately in nursing homes."

— Barbara O’Connell, CEO and Co-Founder

“This would enable survivors to move much more effectively from acute hospital care, through specialist in-patient rehabilitation if needed, and on to community-based services. Doing so also avoids delayed discharges from acute hospitals, frees up beds in our National Rehabilitation Hospital, reduces the burden of care on families and creates significant cost savings to the State.

“Too many brain injury survivors are left merely to exist, inappropriately placed in hospitals and nursing homes where they do not belong. We have solutions to help survivors rebuild their lives in their own communities – and we need urgent investment to make it happen. “It is unfathomable that our Government would not take notice as the World Congress takes place in Ireland this week. Following this Congress, ABII will work closely with the Government and the HSE in order to make this happen.”

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“It’s very significant for our country to be hosting the world’s leading experts in brain injury research and rehabilitation for the next three days. In Ireland, we recognise the vital importance of investing in brain health and brain injury treatment at all stages of the neuro rehabilitation pathway, from acute hospital to home. Timely, individualised rehabilitation has the potential to increase independence, maximise ability and enable survivors to participate as active citizens in our communities.”

— Minister of State for Disability, Anne Rabbitte TD

“When a person acquires a brain injury, they are often inappropriately placed in nursing homes, where they lose their independence and confidence. This should not be the case. Everyone should have access to rehabilitation. It is a right, not a request! This is why the government need to invest in a Case Management service and give survivors a pathway home.”

Brain Injury survivor Rosie Mangan set out why a brain injury Case Management service in needed in Ireland: “There’s no continuum of service for brain injury survivors. According to our Government, when medically stable, survivors should progress from acute care to step down rehabilitation as close to home as possible. Unfortunately, even today, limited resources and long waiting lists result in many brain survivors being inappropriately placed in nursing homes. We feel abandoned, denied our human right to rehabilitation, and the opportunity to rebuild the life we fought for.

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“The inappropriate placement of young brain injury survivors in nursing homes is a human rights violation. I very nearly ended up in one myself after acquiring my brain injury, and I am a young woman in my 30s. If it wasn’t for the strength, support and dogged determination of my family, my life today would be completely different. We need to get this issue solved if we’re to avoid yet another black mark for institutionalisation in our history. Let’s empower our brain injury survivors, and get them back on a clear pathway towards more independent living.”

— Rosie Mangan, Brain Injury Survivor

We are launching this campaign at the IBIA Congress, where over 1,000 delegates will gather to learn about and share developments in brain injury research. Congress President and Principal Clinical Neuropsychologist at ABII Dr Brian Waldron said this Congress is “a once-in-a-lifetime opportunity to shine a light on the key issues surrounding brain injury – the leading cause of death and disability worldwide – and to influence our Government representatives, policy makers and those in our health services to account for the resources and research it requires.

Support our call, give brain injury survivors a pathway home.

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