Dr. Joanne McCarthy:

Some of those would include peer support services. Many of the neurological organisations would provide peer and family support services. These are very skilled people who come in and out of families at the onset of the neurological condition and travel through that family's life to the pathway of the condition. They are able to provide expert knowledge and support. If we take, for example, motor neurone disease, they might have a family nurse who works with them. They know the trajectory of that condition from diagnosis to, unfortunately, the end point and then on to supporting families out the other side. It is those sort of services. I will use motor neurone disease as an example. We know there are approximately 400 families at any one time in Ireland who are affected by motor neurone disease. It is a ravaging condition that moves very fast. For most people, from diagnosis to end of life is about four years. That organisation works with that family to make sure they have access to the appropriate aids and appliances, information around self-help for the carer, and information around a good quality of life for the person at the different stages. They would have a nurse and also, if I remember rightly, a family support, and they would also provide peer support. All of those services went online very quickly as best they could but in many cases, and Inclusion Ireland will probably talk about this also, some services can only be delivered face-to-face. All those face-to-face or person-to-person services were withdrawn. While efforts were made to put online services in place, they could not fully replace face-to-face services at any one time. In the lockdown, we were unable to get aids and appliances out to families if a condition changed dramatically very quickly. I am sure they were not able to get aids and appliances to those families. It is that level of community infrastructure that is often not fully appreciated by those outside our sector. We do have day and residential services, and the core service programmes, but it is the softer community services that support the resilience of families and individuals to live with a level of independence in the community that are important. Many of those got lost or had to go online and therefore may not have had the same immediacy as might have been required.