Rehabilitation is a right, not a request: 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.
“Don’t Save Me, Then Leave Me,” was the wake-up call we delivered to politicians today. We presented the case for urgent investment in regional neuro-rehabilitation services in the Dáil AV Room.
Forced to live in nursing homes
19,000 new brain injuries are acquired in Ireland annually from causes including stroke, road traffic accidents, falls, assaults and brain tumours. But despite more people surviving the major trauma of a brain injury, many young brain injury survivors are forced to live indefinitely in nursing homes or community hospitals without access to any rehabilitation to aid their recovery.
No specialist rehab beds outside Dublin
Additionally, many more are discharged home to families who are often unable to cope and struggling to understand the aftermath of brain injury. If you have a brain injury outside Dublin, there are no specialist rehabilitation beds available regionally. This is despite the need for regional rehabilitation centres being clearly outlined in the Neuro-Rehabilitation Strategy in 2011 and confirmed again in the 2019 Neuro Rehabilitation Implementation Framework.
Urgent call for regional rehab centre
Today we called on politicians to support our proposal to deliver Ireland’s first Regional Neuro-Rehabilitation Centre and support families in crisis after brain injury. Our centre will offer specialist in-patient and out-patient rehabilitation for people with an acquired brain injury in a 25-bedded centre.
Families are pushed to breaking point
Barbara O’Connell, Chief Executive with Acquired Brain Injury Ireland said: “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. Without investment in rehabilitation, 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.”
Fill a vital rehabilitation gap
Ms O’Connell added: “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.”
Eight years waiting for action on national strategy
According to the national brain injury charity, lack of action on the long-awaited neuro-rehabilitation implementation plan means too many young brain injury survivors are wrongfully placed in settings like nursing homes and community hospitals.
Too many still placed in a nursing home
One young brain injury survivor told politicians how he was institutionalised for seven years at just 35 years old, without access to rehabilitation in that time. After suffering a brain injury due to complications with diabetes, Ian Kelly initially received intense rehabilitation at the National Rehabilitation Hospital for three months. But then he was discharged back to Tallaght Hospital where he remained stuck for a year and a half until he was then discharged to a nursing home for five years. According to Acquired Brain Injury Ireland, this is a clear example of the inflexible funding model in our health system that failed to provide an appropriate rehabilitation place for Ian.
Read Ian’s story
Now, 45 years old, Ian said: “When I was in the nursing home, I lived on a ward for five years. I only had a bed and a locker to myself. For five years I lived with older people. I had no rehabilitation and no independence. It wasn’t until 2014 that I was able to take up a residential rehabilitation place with Acquired Brain Injury Ireland. At first I found it difficult to adjust to living in a house after being institutionalised for so long in hospital wards. But the staff were brilliant and supported me in my goals to live independently.”
Last November (2018) Ian moved into an apartment where he lives independently with support from an Acquired Brain Injury Ireland keyworker who visits twice a week.
Ian added: “Acquired Brain Injury Ireland gave me my life back. Without their help, I don’t know where I would be now, probably still sitting in a nursing home with no future and just waking up and going through the motions every day.”
100,000 living with effects of brain injury
Acquired Brain Injury Ireland has called on Government to prioritise investment in their regional neuro-rehabilitation centre in 2020. It is estimated that more than 100,000 people in Ireland are living with the consequences of brain injury at any given time.
It’s a lottery to get rehab services
Ms O Connell stressed to politicians how it’s a lottery for brain injury survivors getting access to neuro-rehabilitation services which is having a detrimental impact on the lives of brain injury survivors and their families.
Benefits of our proposed Regional Neuro-Rehabilitation Centre:
- Remove ‘bed-blockers’ and free up acute beds. Take brain injury survivors out of acute hospitals who don’t need to be there.
- Free up places in the National Rehabilitation Hospital (NRH) and reduce NRH waiting list. Take people who have completed their medical rehabilitation or straight from the waiting list.
- The centre will provide specialist brain injury rehabilitation that will ensure people reach their maximum potential.
- The centre will reduce the burden on families who are struggling to cope.
- The centre will save money across our health services by providing timely access to rehabilitation and improving the flow of people from hospital to home.
Acquired Brain Injury Ireland is the nation’s leading provider of community rehabilitation for those of working age (18-65 years) living with and recovering from an acquired brain injury.
Learn more about our presentation to politicians here.
Media queries to:
Caroline Cullen, Communications and Engagement Manager, Acquired Brain Injury Ireland
Mob: 087-2491332 Tel: 01-2804164 ext 260 E: firstname.lastname@example.org
Pictures taken by Mark Stedman.