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Fibromyalgia: Statements (Continued)

Thursday, 4 April 2019

Dáil Éireann Debate
Vol. 981 No. 5

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Deputy Caoimhghín Ó Caoláin: Information on Caoimhghín Ó Caoláin Zoom on Caoimhghín Ó Caoláin I express my thanks to Deputy Gino Kenny for bringing forward this issue for address today. I was pleased to sign Deputy Kenny's motion on fibromyalgia on behalf of Sinn Féin.

Ms Rachel Lynch from FibroIreland and Ms Joan Byrne from ME Advocates Ireland have reached out to me personally and to my party over a long number of years and we have always been more than willing to listen to their issues and try to advance what they seek to achieve. I thank them for their perseverance in advocating on behalf of all those contending with fibromyalgia in their lives.

On the HSE website, fibromyalgia is described as a long-term condition that causes pain throughout the body. In 2008, a declaration was passed in the European Parliament that recognised fibromyalgia as a disease. The World Health Organization had, years previously, also recognised fibromyalgia as a disease.

Fibromyalgia is an invisible condition. It does not show up in scans or blood tests, yet clinicians recognise that it is chronic, leading to muscle and joint pain, sleep disorder, mobility and lifestyle impact. Many sufferers go undiagnosed. Despite recognition by medical professionals of the existence of the condition, there remains, crucially, little recognition of it by the Health Service Executive. The effect of this is that fibromyalgia is excluded from the long-term illness list and without a pathway of care towards a treatment when it is recognised that a person is suffering from the condition.

Without proper recognition of fibromyalgia, many patients remain locked out of the social welfare system. On top of this, even after accessing basic social welfare provision, many remain out of reach of additional benefits, such as free travel and a medical card, to which those who have a recognised long-term illness are automatically entitled.

As Deputy Gino Kenny's motion states, it is estimated that between 90,000 and 180,000 people suffer from fibromyalgia in Ireland. Despite this significant number, there are no nationwide or specialist treatments available for patients. It is vitally important to highlight that many of those suffering with the condition are women, with a ratio of six to one on the basis of female versus male assessment.

To try to address this situation, it is essential that the Health Service Executive and other State agencies sit down together and decide, once and for all, on the basis of the clinical evidence available, if they are willing to officially recognise fibromyalgia as a disease. I make it very clear that there is only one answer that can be reached in such an undertaking. If this is to be the case, an adequate pathway of care, a treatment programme, an awareness campaign and associated funding must be put in place, including specialist clinical teams to treat the condition. This could also lead to the commencement of the collection of data, establishing best practices and expanding knowledge of the condition which will lead to better approaches and better treatments in time. Training and development for medical professionals is also crucial to aiding earliest recognition and diagnosis and the consequent treatments of patients.

One of the asks in the motion prepared by Deputy Gino Kenny and colleagues is that patients be facilitated in accessing medicinal cannabis as a treatment for this condition. Sinn Féin is certainly not opposed to this request, especially where there is clinical evidence to support the request and a prescription from a consultant or suitably qualified medical professional is available. It is something that simply should be done.

I thank Deputy Gino Kenny for bringing this issue forward. I also thank all those who are advocating for recognition of fibromyalgia and the changes in prescription practices that must come about. We in Sinn Féin remain open to assisting in any way we can steps towards recognition of and relief from this cruel and life-debilitating condition.

An Leas-Cheann Comhairle: Information on Pat the Cope Gallagher Zoom on Pat the Cope Gallagher Bogaimid ar aghaidh anois chuig an Teachta Gino Kenny, who, I understand, is sharing time with Deputy Paul Murphy.

Deputy Gino Kenny: Information on Gino Kenny Zoom on Gino Kenny I welcome everybody in the Public Gallery to this important debate. I thank the Business Committee for agreeing to take statements on fibromyalgia, which is an important subject. I presume this discussion has been arranged on foot of the motion on the issue I submitted last week. I am disappointed with the number of Deputies who have turned up thus far. Many people are watching and listening to this debate and, more important, waiting to find out what the Government will do to address the issue. It means a great deal to many people who have this condition and they want to know what we, as legislators, will do.

For far too long, there has been an unhealthy silence on conditions such as fibromyalgia and myalgic encephalomyelitis, ME, which are all too invisible in the case of those who live with them. Although this is a cliché, people look perfectly healthy but inside they have to suffer from the chronic pain and fatigue that comes with fibromyalgia. While this debate has moved on in recent years, people who suffered from fibromyalgia, particularly women who are more often affected than men, were written off medically as hypochondriacs or, worse, people suffering from psychosomatic disorders. This was an insult to the sufferer and the condition.

I thank Ms Rachel Lynch and Ms Ursula Hakman from FibroIreland who have helped me understand fibromyalgia. I did not have much knowledge of the condition or of ME. Through their knowledge and experience, they have helped me and others to gain a greater understanding of the condition. I hope today will be the beginning of a much wider debate on fibromyalgia and its recognition as a disability in the State. Bizarrely, given the current discussions on Brexit and the artificial Border in this country, fibromyalgia has been recognised as a long-term condition in the North since 2016. If fibromyalgia can be recognised in the occupied part of Ireland, why can this State not recognise it? There is an ongoing debate in Britain on its recognition and while it is progressing, it has not yet gone far enough. Fibromyalgia must be recognised as a disability as this would result in patients having better access to services and medications and better dealings with the social welfare system. There are horror stories about people with fibromyalgia and ME being put through the ringer by the system. If fibromyalgia is not considered to be severe enough, the sufferer has to fight the system, which can make the condition even worse for those who live with it.

Other Deputies alluded to the long-term illness scheme. It is extraordinary that not one condition has been added to the scheme for 49 years. Surely fibromyalgia fits the bill for being added to the long-term illness scheme. The only reason I can think of that it is not on the long-term illness scheme is funding. It is as simple as that. While those with the condition may have a GP-only medical card, they must cover other expenses such as therapy and medications. It is ridiculous that the scheme has not been extended in 49 years. While that is a separate issue, it is incredible. Fibromyalgia is recognised as a condition in France and has been included on the country's long-term illness scheme, which means patients can get medication and so on.

There is major misunderstanding of this condition and addressing that is half the battle. The reason for this debate is to create a greater understanding of the condition because misunderstanding compounds fibromyalgia. To dismiss the condition is unforgivable.

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