John McGuinness (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

The easiest way for me to capture what people think about this is to read from a letter I received from a constituent in January. The content of the letter represents what most people would write in their correspondence, and I have received numerous letters about the campaign to have fibromyalgia recognised. This lady writes to me about her son, who is 46 years of age. He has had the condition for nine years. He was a schoolteacher but his condition got so bad that he was forced in 2017 to take a career break, which was not paid. His pain and his condition worsened. He continued his course of medication and continued to do all the things that the various websites and Facebook pages suggested to alleviate the pain. He was on illness benefit of €197 trying to pay a mortgage and keep a roof over his head. On his doctor's advice, he applied for a medical card in 2008. It took six months for the card to come through. As the condition is not recognised, there is no way he can be dealt with in the context of defining the disease and then giving the prescriptions, looking after the management of the pain and so on. It is hugely difficult, and this is someone who is trying to work. This lady finishes her letter by saying he is not a lazy person and never has been and that she cannot comprehend why this Government is doing absolutely nothing about this.

That was in January 2019. Since my election to this House, and particularly in the past ten years, huge efforts have been made by the various organisations that represent those who suffer from fibromyalgia. In the Minister of State's own words, all she is doing here, with respect, is explaining that she is listening to Members and that she understands the symptoms. She went on to talk about primary care services, disability services and so on. In reality, however, these people suffer in silence. Their quality of life suffers greatly. As other speakers have said, because of the medication, the pain and the fact that they cannot fully participate in their work or lives, they also end up on antidepressants. The time has come for the Government to recognise this disease and the fact that the World Health Organization recognised it in 1992. Once recognised, a pathway to care must be put in place that is easily accessible and supported by a medical card and an understanding at primary care level in order that the services can be provided without hassle and with the full support of the patient.

On Sunday, 7 April, from 10 a.m. to 4.30 p.m., in the Woodford Dolmen Hotel in Carlow, there will be a presentation and a full day to try to assist those with fibromyalgia to understand what they are going through and to give them the necessary supports. While all this is going on in the public domain, supported by people who understand the disease and are campaigning to have it recognised, the Government is doing nothing. Debates such as this are extremely useful because they help to highlight the issue, and I thank Deputy Gino Kenny and other Deputies for ensuring that this debate was held in this Chamber. However, the measure of this, from the public's point of view, will be the action the Government takes, having listened to all of what was said here today. What every single speaker said could be repeated over and over again because it reflects the experience of the individual who is suffering continuously the pain we are all talking about.

There is a need to inform GPs and set out a pathway to care and to support financially the care that will be required. There is also a need for the Government to finally take action on the 1992 decision of the World Health Organization, take its head out of the sand, listen to patients and take the appropriate action arising from this debate.

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