Lack of rehabilitation services is devastating for thousands of people living with a brain injury

An appalling lack of brain injury rehabilitation services is devastating thousands of brain injury survivors and their families across the country, who are left merely to exist, according to Acquired Brain Injury Ireland. Their Communications Manager Caroline Cullen reports.
Lack of rehabilitation services is devastating for thousands of people living with a brain injury
 “Don’t Save Me, Then Leave Me” was the urgent call from Acquired Brain Injury Ireland on behalf of brain injury survivors left without rehabilitation after discharge from hospital. Acquired Brain Injury Ireland Chief Executive Barbara O’Connell, 3rd from left, is pictured with brain injury survivors, from left, Ian Kelly, Jack Doran, Niamh Cahill, Paul de Ferreira and Paul’s father, family carer Ronnie Spadaccini outside the Dail gates. Picture: Mark Stedman

AT Acquired Brain Injury Ireland, we believe that rehabilitation is a right and not a request. When the trauma of brain injury happens to you or a member of your family, you deserve the best chance of recovery and to live your best quality of life that maximises your full potential and ability. But right now, in Ireland, that is not the case for thousands of people living with a brain injury.

Don’t Save Me, Then Leave Me is the message we have taken to politicians because too many young brain injury survivors are left without rehabilitation to aid with their recovery. There is an appalling lack of rehabilitation services in this country and it is devastating thousands of brain injury survivors and their families right across the country who are left merely to exist. Or worse, many young people with a brain injury in their 20s, 30s and 40s find themselves stuck in nursing homes or hospitals when they shouldn’t be there.

An estimated 19,000 new brain injuries are acquired in Ireland annually from causes including stroke, road traffic accidents, falls, assaults and brain tumours.

While there have been great advances in acute care and we are seeing more people surviving the major trauma of a brain injury, what happens to these people after hospital? With so much pressure on a limited number of places in the National Rehabilitation Hospital, many brain injury survivors are discharged home to families who are often unable to cope and struggling to understand the aftermath of brain injury. Others are forced to live indefinitely in community hospitals or nursing homes.

This should not happen.

The result is that our hospitals are clogged up unnecessarily by keeping brain injury survivors in acute beds that don’t need to be there. Families are pushed to breaking point because of severe under-resourcing of brain injury rehabilitation. The reality is if you have a brain injury outside of Dublin, there are no specialist beds for you. The good news is – we have an ideal rehabilitation pathway to move people downstream after hospital.

Eight years ago, a clear pathway was outlined for people affected by brain injury in the National Neuro Rehabilitation Strategy. But as we race to the end of 2019, we are still waiting to see investment in rehabilitation services that will support people with brain injury right along the journey from hospital to home. Currently there are no specialist rehabilitation beds available regionally. This is despite the need for regional rehabilitation centres being clearly outlined in the national strategy and confirmed again in the Neuro Rehabilitation Implementation Framework announced earlier this year.

Brain injury survivors Ian Kelly and Niamh Cahill are pictured outside the Dail gates. Picture: Mark Stedman
Brain injury survivors Ian Kelly and Niamh Cahill are pictured outside the Dail gates. Picture: Mark Stedman

At Acquired Brain Injury Ireland we provide case management, community rehabilitation, day services, transitional living, residential rehabilitation and family support services. We are a lifeline to 1,200 brain injury survivors and their families and we employ 300 rehabilitation staff nationwide providing rehabilitation through residential and community settings nationwide. But even though Acquired Brain Injury Ireland has a model of community rehabilitation services that is working, people are still getting stuck in nursing homes, sent back to hospitals or sent home to families who can’t cope because there is not enough investment in services like ours and there are still no regional beds.

This country cannot continue to save a life on the one hand, but then rob their quality of life on the other hand by not providing rehabilitation to brain injury survivors.

That’s why we’re calling on the government to support our proposal to establish a regional neuro-rehabilitation centre. Nothing like this exists in the regions which is a major source of crisis for families stuck without a brain injury rehabilitation pathway.

Our proposal is in full alignment with the Government’s Sláintecare plan. It will fill a vital rehabilitation gap for families, guiding their loved ones with brain injury back to live in their own communities and out of high-cost care that does nothing to aid recovery after brain injury.

We’ve seen great strides in other health areas, and it is time to see action on the long-awaited neuro-rehabilitation implementation plan so we can start to break the cycle of young people in nursing homes robbed of any chance to maximise their ability after brain injury.

Imagine being institutionalised for seven years at just 35 years old? This was the reality for one of our clients after he suffered a brain injury due to complications with diabetes. He initially received intense rehabilitation at the National Rehabilitation Hospital for three months. But then he was discharged back to hospital where he remained stuck for a year and a half until he was then discharged to a nursing home for five years. For those five years, all he had was a bed and locker to himself. He found himself living in a setting with older people and no independence. This is a clear example of the inflexible funding model in our health system that failed to provide an appropriate rehabilitation place for a young man.

It wasn’t until 2014 that this man was able to take up a residential rehabilitation place with Acquired Brain Injury Ireland and he found it difficult to adjust to living in a house after being institutionalised for so long in hospital wards. But the proof of the benefits of rehabilitation speak for themselves. This man has made enormous progress with his rehabilitation goals and he is now living independently in his own apartment.

Brain injury rehabilitation cannot continue as a Cinderella service in Ireland. There is an estimated 100,000 people living with the consequences of brain injury in Ireland.

Some of these will get access to rehabilitation, many won’t. It’s a lottery for brain injury survivors which is having a detrimental effect on families in every corner of the country. We encourage the public to support us in our call to politicians to prioritise investment in our services and to support our proposal to establish the first regional neuro-rehabilitation centre to benefit brain injury survivors.

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