Ms Finola Cassidy:

Ms Browne certainly has more personal experience. As she said, we do not like to have to tell our personal stories but that is the problem when you are one of so few people in the country, nearly everybody knows the individual in their parish who is a thalidomide survivor and then they end up explaining

I refer to the medical care, I know Ms Browne might have an addition to this. When we talk about Brendan Corish in the 1970s, there was an idea at that stage that we were the survivors of this catastrophic event and we were not expected to live much past our 20s or 30s. There was no plan. Many of our parents were told that their children would not survive that long and that they should make the most of the life they had etc. To our credit, when we reached our 20s, many survivors led phenomenally independent lives as disabled people. I spent virtually my whole life pretending I was not disabled. We tried very hard to do normal things our normal way. In fairness to us, we go on with that. It was the onset of middle age that brought us back together, as well as the crop of unprecedented reactions in our bodies. Our bodies began to cave in.

The Department had not heard from us in 35 years. We were a bit of a surprise when we came back out of the woodwork because very little had needed to be done in the interim years because of the independence of the disabled persons in our little group. The Department needs to realise that aside from the thalidomide issue, it is the overuse and misuse of those disabled limbs, doing things that the bodies with disabilities were never expected to do, that has taken this later toll on our bodies.

Deputy Tully asked about the medical professionals. The problem is that some of us are actually quite healthy. We are in a lot of pain but we are not ill. When we go to see a doctor, it is usually because of acute pain and bone-related issues. If we have to apply to the local area care unit or the HSE, there are waiting lists for physiotherapy and everything for years. When we have made that strain, the pain is exacerbated there and then multiplied hundreds of times, and we need to access services immediately. It is safe to say that among our group many of us have, maybe locally, worked with our own physiotherapists that we have been paying our own money to because they take the time to understand and assess our needs, as private clients, and work with us continually. If we go to the HSE and ask for physiotherapy, I know in my area there was a two-year waiting list. That will not work for anybody on any level. A person attending will not get the same person consistently. It will be a twenty-minute slot whereas we have invested personal time and personal money in many cases to find the experts in our area who can relieve our pain and manage our condition.

I remember a story of one of the more disabled people in a wheelchair who had dislocated a shoulder. The person presented to accident and emergency but the orthopaedic surgeon on duty that night wanted to relocate the shoulder in a normal way. The surgeon got the bright idea that if they X-rayed both shoulders, they would copy whatever was on the other so that they would match. They could not understand that both shoulders had unique bone deformities and were completely different. The bones could not be corrected in that way. Many of us have experienced that.

We need a scheme where we are in charge of our own destiny. We have invested the best resources of ourselves in finding the solutions. The fragmented HSE system is not working and sadly is not a fit for us. The Government and the Department, as well as Members of the Oireachtas, need to understand that. Our solution is more cost effective because it is direct. It does not need a lot of paper work or bureaucracy. As Ms Browne said, we know what will fix us and when it will fix us. That is where we need that support. Has Ms Browne something to add?