NO ONE EVER thinks a brain injury will happen to them, but it happens to 19,000 people in this country each year – that’s 52 people every single day. Globally, neurological conditions – including acquired brain injury (ABI) – are now the leading cause of ill health and disability.
Brain injuries happen overnight. It could be as the result of a stroke, a fall, road traffic collision or brain tumour, among many other causes. In an instant, the lives of the person and their family are turned upside down.
The effects of any brain injury are life-changing. Some people live with long-term challenges – many hidden, others not: chronic fatigue, loss of sight or speech, memory loss, difficulty managing emotions, reduced capacity to work, or carry out everyday activities like cooking, washing and managing family life.
Advances in medical care and technology have resulted in more people surviving the trauma of a brain injury, but survival is just the beginning of a long and often complex recovery journey.
Acquiring a brain injury means adjusting to an entirely new way of living and finding ways to cope with a range of psychological, physical, social, emotional and economic consequences.
For these reasons and many more, timely neuro-rehabilitation is of the essence.
Neuro-rehabilitation is a clinical and social process to help recovery after a brain injury. It is about relearning, compensating and regrowth, so the person lives a meaningful life of their own choosing – the WHO describes it as a problem-solving process. Each person is assessed, a personalised plan is put in place and, gradually, they are supported by an expert team to regain independence and adapt to their environment.
We know that life after a brain injury can be so much better if the person has access to the rehabilitation they need as soon as possible. Research tells us that “early access to specialised, intensive neuro-rehabilitation services enables people with ABI to recover faster and achieve the best outcome for them, their families and society at large.”
Timely access shortens the length of hospital stays, and reduces the burden of care on families, and the cost to the state. Most importantly, it lessens the impact of the brain injury and maximises the potential of the person to rebuild a new life.
It is well documented that neuro-rehabilitation is a necessary part of recovery and adjustment. But despite all the evidence, neuro-rehabilitation services in Ireland continue to be substantially under-resourced.
While some recent and welcome investment has been made in short-term, post-acute services, the reality is that there is still very limited neuro-rehabilitation available to survivors, especially over the long-term in the community. Even the Government’s national neuro-rehabilitation strategy acknowledges that “services in the area of neuro-rehabilitation have been underdeveloped in Ireland and where they exist, they have been developed in an ad hoc manner”.
The result, for survivors and their families, is a lottery of age and geography where access to rehabilitation and potential for recovery depends on where you live, or how well your family can advocate for services. This is a fundamental contravention of the human right to rehabilitation as enshrined in the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
Brain injury survivors in this country are faced with the real possibility that, instead of living the life they’ve fought for, they will be left merely to exist. At one of the most vulnerable times in their lives, they and their families find themselves alone, lost and overwhelmed on a fragmented pathway between hospital and home.
Some stay months, or even years in hospital beds waiting for a rehabilitation placement. Others are discharged without a plan for follow-up supports, to homes that are not accessible and with families unable to cope. Young survivors are still being placed inappropriately in nursing homes for older people because there is simply no alternative available. Once there, there is no equitable system in place to review and support their case. Behind closed institutional doors, many are forgotten about.
However there are solutions to the pathway problem, and sustainable state investment in long-term neuro-rehabilitation is one of the cornerstones.
Currently, 21 brain injury survivors previously placed in nursing homes are living in Acquired Brain Injury Ireland community-based houses with 24/7 specialist rehabilitation support. Our Case Managers and rehabilitation teams have supported 41 more to transition out of nursing homes back to community living. Some of them have since moved into their own homes.
Over two years, our vocational rehabilitation programme supported 234 survivors: 53% returned to work, 21% to education. All of them are making a meaningful contribution to the communities of which they are a part.
Our Clubhouses, providing group rehabilitation, promote independence and offer members structure, community and camaraderie. Education resources and peer support groups are available to families and carers coming to terms with a new way of life.
With access to ongoing neuro-rehabilitation it is possible for survivors of brain injury to rebuild their lives and reach their full potential. But it must be available on an equitable basis for everyone who needs it.
And ultimately – what is the alternative? Incidences of ABI will continue to increase in the years to come in line with increased survival rates. So too – as the evidence shows – will demand for neuro-rehabilitation. It is incumbent on those elected to our next Dáil to address the lack of political priority and slow policy implementation process in this area to date, described in research as the “inhumane mistake of many national governments”.
In advance of Friday’s vote, we at Acquired Brain Injury Ireland are calling on candidates to fight for the lives of brain injury survivors. We are asking them to commit in the Programme for Government to fully implement the Neuro-rehabilitation Framework 2019-2021. We want to see our elected representatives:
In the course of our election campaigning, we spoke to author and survivor Phil Quinlan who described his lived experience after suffering a traumatic brain injury on the football field at the age of 15. To this day he asks if he could have achieved so much more, had the system kept him and supported him.
He talks about the impact on his parents who took over his rehabilitation when he was discharged from hospital, ‘left to his own devices’. And he affirms – as we know too well from our work in the field – that “After the devastation of a brain injury when families have their loved one back home, they’re emotionally so relieved and simply exhausted that often they don’t have the energy to seek help.”
On behalf of Phil, and the 120,000 other people in Ireland living with a disability after brain injury, we invite you to support our campaign ahead of this Friday’s election. Please ask the candidates in your locality if they will ‘fight for the lives’ of brain injury survivors and sustain vital rehabilitation services. None of us know when we may need the support.
Dr Karen Foley is the CEO of Acquired Brain Injury Ireland.
To embed this post, copy the code below on your site
have your say