Families of brain injury survivors being given ‘no hope’

The families of people who suffer severe brain injuries are given "no hope" in Ireland and are "basically left to fend for themselves" according to a new advocacy organisation aiming to transform the services for people who suffer these injuries.

An Saol was founded in June by families who were told their loved ones would either die or have no quality of life. They say they know – through experience – outcomes can be very different and that, if given sufficient and timely rehabilitation, survivors can have “good lives”.

‘Dramatic improvements’

"We have seen dramatic improvements in our family members when told it was not possible," says one of the founders, Reinhard Schaler. He was instrumental in starting An Saol, after he and his wife, Patricia O'Byrne, battled to get appropriate rehabilitative therapy for their son, Pádraig (26). He was knocked down by a truck while cycling to work in the United States three years ago.

He needed brain surgery and doctors, says Mr Schaler, told them he could die and if he lived he would have very little quality of life. “We were told there was little we could do and the best option was to place him in a nursing home and maintain him until he died.”

Instead they brought him to Germany – where Mr Schaler is originally from – and where he got intensive, long-term rehabilitation not available here, and progressed in ways they were told he never could. They have brought him home and, with other families, established An Saol to provide ongoing rehabilitation, in part to prove there is hope with the right services.

It is “shocking”, says Mr Schaler, “that it is accepted practice to send survivors to nursing homes to be managed following short assessments and treatment programmes”.

Under-resourced rehab

Dr Mark Delargy, medical director of the brain injuries programme at the National Rehabilitation Hospital (NRH) in Dún Laoghaire, says the standard of rehabilitative care offered is "on a par with the best in the world" but "very badly" under-resourced. An average waiting time of a year for an NRH bed is "bad news and not satisfactory", while the fact Ireland has only eight rehabilitation consultants was a source of "constant embarrassment". Luxembourg, with a population of 580,000 has 10, he says,

A spokeswoman for the NRH said it was difficult to compare the services it provided with those in Germany and the US “due to their alternative funding models”. The NRH is fully publicly funded. Since 2011, when it received €22.48 million, its funding has increased. However, this year it fell – from €27.22 million to €26.75 million.