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Fibromyalgia: Statements (Continued)

Thursday, 4 April 2019

Dáil Éireann Debate
Vol. 981 No. 5

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(Speaker Continuing)

[Deputy Gino Kenny: Information on Gino Kenny Zoom on Gino Kenny]  I am no expert on fibromyalgia and I can only try to put myself in the shoes of somebody who has worked with chronic pain and fatigue. I cannot imagine that kind of constant pain. Relying on opiate-based medicine is not desirable and the long-term side-effects are completely detrimental. Alternative medicines should be found, particularly for treating chronic pain. Other Deputies have implied that it is extremely disappointing that with respect to chronic pain and the proposed access programme, medicinal cannabis was not suggested as a treatment. That is extremely disappointing.

I hope we can get one thing from this debate. We can have flowery debates and great speeches with nothing ever happening. After these statements, will the Minister of State meet a representative of each party so we can progress this matter? We are Deputies representing many people in this country who have fibromyalgia. Will the Minister of State meet representatives of each party in the next two to three weeks?

Deputy Paul Murphy: Information on Paul Murphy Zoom on Paul Murphy 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 Men that 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.

An Leas-Cheann Comhairle: Information on Pat the Cope Gallagher Zoom on Pat the Cope Gallagher Deputy Pringle is sharing time with Deputy Maureen O'Sullivan.

Deputy Thomas Pringle: Information on Thomas Pringle Zoom on Thomas Pringle I welcome these statements on fibromyalgia but I wonder how much attention the Government will be paying to Deputies' contributions. I know a large number of constituents are coming to me at my clinics in Donegal in absolute despair not only because they are dealing with an illness that is debilitating but also because their condition is not recognised by the State, particularly when it comes to accessing social welfare supports. Fibromyalgia is called the "invisible illness" for a reason, namely, it is difficult to diagnose and the causes are still not fully understood. It is invisible because there are no visible symptoms other than someone being bedridden due to pain or having his or her daily activities curtailed. As it is the so-called invisible illness, people undergoing diagnosis or applying for social welfare supports are made feel like they are liars. Fibromyalgia is not listed on the long-term illness list but it has been has been included on the international statistical classification of diseases and related health problems published by the World Health Organization since 1992. As it is not listed on the long-term illness list, people with fibromyalgia are essentially invisible to the State.

I spoke with Ms Caroline Tait, chairperson of the Donegal support group for people with fibromyalgia, who gave me a very in-depth account of the reality for someone who suffers with the condition. She stated that just getting someone to diagnose the illness in the first instance is an uphill battle. A person needs the diagnosis of a rheumatologist but the waiting list for that is so long, a number of years in some cases, that some people end up going to see a clinician privately in order to obtain a diagnosis. Not everyone has the means to do this and some cannot even get the condition recognised by GPs. If people are on medical cards, they cannot go to different GPs to get treatment. A long list of medication awaits someone once diagnosed with fibromyalgia and some of them do not work. Some people are being prescribed medication that is for other conditions, such as epilepsy, or antidepressants, which can lead to addiction or other side-effects. Furthermore, many people end up having to give up work due to fatigue and the pain they suffer. As many people have problems acquiring medical cards, their partners are put under increasing pressure to be able to afford the number of medications these people end up having to take. We know the level of suffering people with fibromyalgia go through and it is unnecessary.

First and foremost, the condition needs to be recognised as a disability. I repeat some of the calls made in the motion on fibromyalgia from a number of months ago and I urge the Government to once and for all establish an effective and sustainable model of care to diagnose, manage and treat fibromyalgia. It should develop a model of care that is based on international best practice and implement a strategy to set up a framework to help those living with fibromyalgia. The Government must conduct a review of the long-term illness scheme, which has not been updated since 1970, or 49 years ago. Perhaps for its 50th anniversary it can be updated. The Government should carry out a dedicated and rigorous review of the underlying causes of the condition while rolling out a comprehensive education programme for those working in social welfare who deal with people with chronic illness. This is vital in order that people can be treated with respect. The Government should also invest in community, primary and secondary care, as committed to in the Sláintecare report. Finally, the Government must do what is necessary to make this "invisible illness" visible and acknowledge what people are experiencing while living with fibromyalgia.

Deputy Maureen O'Sullivan: Information on Maureen O'Sullivan Zoom on Maureen O'Sullivan I acknowledge the tremendous work that has been done with certain illnesses. I refer to cancer, heart disease and even certain kinds of stroke. We know that with the work done and that the illnesses to which I refer do bring with them the death sentence that they used to bring. There are, however, illnesses in respect of which the relevant treatment has not advanced to the same degree and which has not kept pace with the progress made in treating cancer and heart disease. I can think of the people who suffer with Crohn's disease and colitis, as well as those we are discussing today. I acknowledge the work of Deputy Gino Kenny on this.

Like Crohn's disease, fibromyalgia is a debilitating illness that affects quality of life.

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