Ms Vicky McGrath:

I might jump in. Dr. Lynch might speak a little about genetic issues specifically and the impact of coronavirus on genetic services. We conducted a study last year on coronavirus and its impact on patients. It was mind-boggling. A person living with a rare condition might be the only one in the country with it, so there is a lack of knowledge about different rare conditions. It is not the fault of any particular consultant or doctor. It is just the nature of rare conditions. They are complex and not many people have them so it is very difficult to have a full understanding. When coronavirus arrived, patients worried about their underlying rare condition now had an unknown virus lumped in on top of them. It was terrifying them. Many people cocooned of their own volition. They were not asked by the Department or the public health system to cocoon but were doing it of their volition as they were so scared and worried.

Things have now moved on. We have moved into the world of vaccinations. After much lobbying from various patient organisations in the country, some changes were made to the prioritisation and many people with rare conditions were moved right up the list. There is still much concern for people, and families, with young children who are living with rare conditions. We have previously asked for carers to be prioritised. At this stage, the vaccination is rolling out so we hope that people will remain safe and people with vulnerable children will feel safe over the weeks ahead. It has been hugely impactful, psychologically.

Regarding services, many of those people have missed out on their day care and community services. People were moved into the public health system, and track and trace and so on, willy-nilly. Some of these services have still not reopened. Adults living with rare conditions, who possibly have mental health deficiencies, are still not getting their daily care services. There are families with 20- or 25-year-olds still at home wondering when they will ever get back to services. Those who are back in services are only back part time. These are people who need structure and daily routines. Many families feel they have been completely thrown under the bus. I ask Dr. Lynch to come in specifically on the genetics waiting list and coronavirus.