Dr. Niall Pender:

I am happy to address some of those questions. I thank the Deputy for giving us the opportunity to talk about these issues today. Neurological disability is in a very chaotic, unclear and unstructured position at the moment. We do not have data on the number of people with any of these conditions. We have some minimal epidemiological data to give us the number of new cases that might be diagnosed but most of our data come from international studies extrapolated to Ireland. We do not have a very clear picture of the number of people currently living with neurological disabilities and the impact of those disabilities on their conditions. One of the challenges we have is that, because there is no clear strategy for what happens once a person is discharged from hospital, people fragment. Many people disappear into the community and struggle on their own. This is why many people describe themselves as being hidden. They disappear into the community and try to manage their disability with the help of their families. These are people who were living full lives and suddenly had everything change with a diagnosis, an injury or an illness.

In other cases family members have to use Google to find out the symptoms and where they can get treatment. For any other illness a person would not have to find out what were their symptoms and what treatments were available. If a person had a cancer diagnosis he or she would not need to find a radiation oncologist or find a chemotherapy service. Many of our patients with brain injury have to do this. They have to find a neurophysio, a neuropsychologist or neurologist. In the case of epilepsy, mobility difficulties or balance problems, they have to find treatments themselves. There is no coherent, consistent programme where somebody slots in and follows the person through discharge into the community, transitional living units - we have one or two possibly in the community - community neurorehabilitation and into long-term care. The system is haphazard.

It is also haphazard based on where the person lives. There are some spots in the east, in Dublin, and in Limerick and possibly in the south-west and Cork. If a person with a disability lives along a line from the south-east up to the north-west there are very few services for them. Access to services depends on where the person lives. A person might be discharged to a community team and have some resources, or he or she might not, in which case it is up the person and his or her family to find the services. Not only are family members trying to cope with the impact of the illness and disability but they are also trying to find services and treatments. Some people return to work after a couple of weeks after a major brain injury and everything falls apart and they lose their jobs. Some people never get back to work or education again. We know the rehabilitation systems work. They can help people and give them a structure. The information and interventions these people get make a difference if they get them in a timely way. We know from many international studies that even up to 40 years post-injury a person can still benefit from rehabilitation, if he or she gets it. Some of the international data would suggest that 40% of people who are rough-sleepers have had a brain injury at some point and their lives have fallen apart for lack of services. Prison populations have high rates of people with brain injuries. We know there is a cost to this in regard to people's capacity to live independently, to participate in society. We need to put in place the rehabilitation structures we know exist in many parts of the world.