Paul Murphy (Dublin South West, Solidarity) | Oireachtas source

I pay tribute to the campaigners on this matter who not only must put up with the chronic pain that they experience while functioning in the world but also when they must campaign for proper recognition and assistance. That process includes debates like this in the Dáil, and I thank Deputy Gino Kenny for his work in raising the matter. It was essential in getting this debate to happen.

The Government's response is disappointing when we take away the words of understanding, care and so on. When we get to the bottom line, there is no fundamental change in the position. I looked at a question I posed to the then Minister of State at the Department of Health, former Deputy Kathleen Lynch, in June 2015 about extending the long-term illness scheme to include fibromyalgia but the answer was that there were no plans to extend the list of conditions covered under the scheme. The answer from the Minister of State today, four years on, is that the requests are being considered carefully but that there are no plans to extend the long-term illness scheme at this time. Effectively, there is no change. That is unfortunate.

When there are between 90,000 and 180,000 people affected by fibromyalgia, it is worth asking how the condition is so misunderstood, badly diagnosed and not recognised properly by the State. It is probably not an accident that it affects women and men at a ratio of 6:1. This is related to the fact that it is not recognised properly in a sexist society that tends to listen less to women. There is a new book called Invisible Women: Exposing Data Bias in a World Designed for Menthat deals precisely with this question and how it just has not been addressed. That to which I refer is a factor in this matter.

I spoke to a friend and comrade of mine earlier, Ms Phil Foster, who suffers from fibromyalgia, about her experiences. For example, she said that approximately 15 years ago she was sitting her living room and tried to get off the chair but she could not stand up. She had to crawl on the floor to the kitchen and drag herself up by using the table for support. She described the condition as like having a tight Lycra suit in which one cannot move under her flesh and in her bones. She shared with me a picture of somebody whose back that was covered with bruises. The person was obviously wracked with pain. That level of pain exists but the problem is that it does not show. People might look at an affected person and think he or she is fine and wonder what is wrong, as it is not a generally or widely understood condition. It can come with other conditions, such as an underactive thyroid in Ms Foster, or anaemia. Her daughter is also affected by it. She spent six years trying to figure out what was wrong and she may have spent up to €20,000 going to different consultants and so on. She was forced to go private to try to find out what was happening. If we multiply that experience by 90,000 or 180,000 people, it is an absolute shame on the State.

The Government needs to go beyond uttering words of understanding; there must be action. We need access to medicinal cannabis for those affected by fibromyalgia and the scrapping of prescription changes, with all medications to be covered. We need the condition to be added to the long-term illness scheme. I echo the point made by Deputy Gino Kenny that it is utterly bizarre to believe that the world of medicine froze 50 years ago and that there has been no addition since by the State.

See this speech in context