Ms Linda Whitmarsh:

We have started an email campaign. My husband and I campaigned previously for the cystic fibrosis drug Orkambi and along with other campaigners, we got it for our child. It is not that we want to campaign but I have to do it. I cannot sit back and do nothing. It is failing all our children. I can see the failure in my child. I only want to help people.

As I said, we started the email campaign. I am sorry if I am repeating myself. I thought it imperative to tell parents about the assessment of need route, that if one goes privately, as we did, one does not get a service statement. One of my main issues was to tell people that.

Then we started a your-service-your-say campaign for everyone on our committee and social media to put in his or her complaint. Via that, we have received three or four referrals from the HSE. As regards support, it is just something where we are supporting one another.

Maybe down the line, we will have little coffee mornings and have inclusion mornings for the children but we will never be a charity or a committee. I am only doing this because I do not want other people to have an eight-year-old who has only received one hour of services in March and one yesterday because I am pushing. I do not want that to happen. This is what we need to stop happening. Get the children who are three years of age and four years of age their services now. For example, we have a five-year-old on our committee and he has been waiting two and a half years. That is half his life. That is not good enough.

It is parents, such as me and my husband, who are put in these situations with children with additional needs. It is fight or flight. Parents are exhausted physically, mentally, emotionally and financially, but we are the type who, if we want to help people, will. We are only coming together and creating a little community and inclusion and somewhere where people can talk and guide their frustrations. We are campaigning on their behalf, not only for our child but for everyone, locally and nationally, and raising these issues because they are so important.

We will never be a charity. The HSE may refer more people to us but we will accept them because we only want to help people.