Dr. Niall Pender:

The impact is devastating, depending on whether it is an acute injury, maybe a head injury or a diagnosis such as a brain tumour, stroke or a neurodegenerative diagnosis such as Parkinsons, MS or motor neuron disease. The impact goes across a range of functions because the complexity of the brain is so difficult and so high. A person can have significant physical disabilities which limit his or her capacity to interact with the world physically, and that may be paralysis, substantial hemiparesis, limb difficulties, visual or auditory sensory problems, headaches, balance difficulties, but also the hidden pieces which are more challenging. This is the piece we see from the relatives when people come back, such as the psychological, cognitive or behavioural piece. People present with difficulties around memory, language, controlling the world, planning, problem solving, sometimes volatile emotion or depression and anxiety. About 40% to 50% of relationships do not survive a severe brain injury. They break down because there are no supports. The person is different, the role has changed. Many patients with severe brain injury do not get back to work. Younger people do not get back to college and they are stuck at home. They need substantial support. Organisations such as Headway, Acquired Brain Injury Ireland and Quest Brain Injury Services in Galway are voluntary bodies which do a great deal of work to try to get people back, but it is a drop in the ocean. The people they see should have gone through a year or two of complex neurodisability before they even get to these organisations; this should be only at the last stage. At the moment the voluntary bodies are scrabbling around for funding to provide these services for people living in the community who are trying to get back into the world again. It could be anything, such as trying to get to the shops to get food, which is an enormous task for somebody after a brain injury, who may be forgetful, have a memory deficit or may be irritable. During the early stages of Covid-19 we saw how patients could not learn the new things so they were getting into difficult situations about masks and social distancing because they just did not understand the new rules. That caused all kinds of conflict.

There was a question earlier about information. Most people do not understand a brain injury, because in many cases the people look the same. This is similar to the autism issue where people look normal yet struggle with an enormous degree of difficulty on a daily basis. Add in the care-giver piece where a relative, sometimes a child, is trying to care for the relative, trying to get his or her life back and get him or her back into the community again. It is such a struggle. I see people coming back into the clinic maybe a year after being discharged. An acquired brain injury such as a car accident or coming off a bicycle - I see two or three bicycle injuries every week involving concussion - can knock people out for a year after the accident because they do not have services and cannot get back to work or college; they struggle and their moods deteriorate. We see it after sports concussions. They are at the tip of the icebergs in terms of the mildness. At the extreme end of severe brain injury where people need residential care, we have young people maybe in their 20s in nursing homes for the elderly and they are sitting in the corner of a room without resources of any kind. The impact on a daily basis on somebody with a neurodisability is enormous and it takes its toll on the family. There is a famous quote that a brain injury is a family affair. It takes its tolls across the family. Relationships unfortunately often break down. Young children are really affected by an adult with a brain injury in the family. Their lives change overnight and there are no resources to facilitate that. They should get family therapy and counselling as well. That is the importance of the neurorehabilitation strategy. It outlines the continuum of care that people should get from the point of their initial diagnosis and early treatment when everybody is optimistic. They go from a point that, with a devastating diagnosis of a brain injury, they survive, they get out of the acute hospital and everything is great and positive, and suddenly they are lost. They have no idea where to go or to whom to turn. That is why the neurodisability strategy and neurorehabilitation strategy are so important, because they provide that framework and scaffolding that allows them to benefit from neurorehabilitation.