Don’t Save Me Then Leave Me. Rehabilitation is a Right, Not a Request; was the campaign message iterated by Acquired Brain Injury Ireland (ABI Ireland) at the launch of a campaign calling on the government to invest in neuro-rehabilitation services for those living with a brain injury in Ireland.
Speaking at the launch of the campaign at the Shelbourne Hotel in Dublin was CEO of ABI Ireland Barbara O’ Connell; she said “More and more people are surviving brain injury due to advances in medicine and technology, but due to the lack of suitable services at the different stages these people are very often only left to exist. Those living with ABI and their families are forced to live on margins of our society. Many, despite their young age, are consigned to live in highly inappropriate settings such as nursing homes and community hospitals or at home where families don’t understand what is wrong with them, or what they can do to help. In Ireland neuro-rehabilitation services are patchy and varied across the country; it’s a lottery as to who receives what rehabilitation and whatever the outcome will be. This is having a detrimental impact on the lives of people with ABI and their families. This cannot continue”.
Brian Hogan knows what it means to live a life with a brain injury and the fearful feeling that resides when in search of rehabilitation. Speaking at the launch of the campaign he said “One reckless punch from someone who didn’t even know me changed my life forever. As a result I know too well what it means to be inappropriately placed after a brain injury, as I was originally in a service that wasn’t and couldn’t provide the rehabilitation I needed. It was an old folk’s home; a was a terrible environment to place a young man of 32 years old who has just acquired a brain injury and was grieving the loss of the life he once knew”.
“I was one of the lucky ones though, I got back into the community to an ABI Ireland residential service in Co Clare where I now call home and receive rehabilitation every day. I don’t want rehabilitation to be about luck though because I know the fear you live in waiting for that lottery draw. It’s heart-breaking and isolating”, concluded Mr Hogan
ABI Ireland developed the Acquired Brain Injury Manifesto calling on the Government to make brain injury a health priority. Calling for a dedicated programme of investment over the next three years and implementing the current government policy on neuro rehabilitation, which was published over 4 years ago is the call to action.
Professor Mark Delargy, Consultant in Rehabilitation Medicine at the NRH spoke about the seamless clinical pathway for ABI services in Ireland, he said “From a clinical perspective, people with brain injury need to have a co-ordinated, seamless service from the emergency response right through to leading a meaningful life back in their own community with their families. Services are currently underdeveloped at every stage of the pathway. As a result people are spending much longer time in an acute hospital bed with access only to very limited neuro-rehabilitation services. Those who have completed their specialist rehab often have nowhere to go because of the lack of community based neuro-rehabilitation services so many end up living in nursing homes; once again inappropriately placed and with little chance of living independently”.
The ABI Manifesto sets out that the programme of investment must develop ABI rehabilitation services in the community through developing longer term ABI specific residential services that meet the medical and rehabilitative needs of people with an ABI and reducing the significant waiting times for access to specialist neuro rehabilitation services by developing community responses and early rehabilitation assessment and regional in-patient rehab units.
Dr Mary Morrogh is a sister of Dominic Morrogh who acquired a brain injury from a kitesurfing accident. Dominic is currently residing in Donnybrook hospital and remains in a minimal conscious state as a result of his brain injury. Speaking about Dominic at the launch Dr Morrogh said “Over four years ago, we lost the Dominic we knew and joined him on this journey, on this rollercoaster. It is a nightmare. It is never ending. We commit every day to fight for some sort of quality in his life, for his comfort and dignity. We move forward in our own lives, but always beside and behind Dominic, desperately trying to lead with hope and find some light. We need support in this fight, and we desperately need the government to invest in quality services, for every person with an acquired brain injury, and their family, wherever they are”.
Don’t Save Me; Then Leave Me. Rehabilitation is a Right, Not a Request, is calling on the Government to introduce a dedicated programme of investment for people with acquired brain injury. Support our campaign on social media and for more information click here .