Thomas Pringle (Donegal, Independent) | Oireachtas source

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.

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