Maureen O'Sullivan (Dublin Central, Independent) | Oireachtas source

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.

We know it means chronic pain as well as another spectrum of related symptoms like fatigue, cognitive dysfunction and reduced physical function. It occurs predominately in women, although it can occur in men. What is most frustrating is its unpredictability and inconsistency. A person can prepared for something he or she is going to experience frequently but it is very difficult when he or she does not know when it will come. Without being sexist about it, we know how much work women do in the home so we can imagine how much more debilitating it is for women than it is for men. When affected women get up in the morning, they do not know whether they will be able to do all the things they normally do or whether they will be struck by fibromyalgia, which means they have to rest or take to bed for the day.

We know some improvements are being made but they are not keeping pace with what is happening. Going back over decades, Governments have been guilty of taking a very poor approach to health so there is a lot of mismanagement in many sections of the health system. We have the highest spend per capitaon health in Europe yet we do not have the health system that should keep par with that. We know that once somebody gets into the health system, he or she is looked after but getting in is the problem. It must be based on need, not ability to pay.

I read one piece from Arthritis Ireland about the condition. The people who suffer from this condition are deserving of much more than what they have received. It does mean that we need a more robust and flexible approach as new illnesses appear. I agree with what has been said about the long-term illness scheme and the need for a review of it. Reading the experiences of sufferers, it is obvious that there are so many difficulties for them involving diagnosis, care and treatment. From international best practice, we know there are examples of best treatment in terms of outcomes for patients. There seems to be a growing consensus around an interdisciplinary approach whereby various methods are implemented to improve the health of the patient. That is critical for fibromyalgia because this disease affects all aspects of a person's life, emotional and physical. I think we can learn what has worked internationally and apply it here.

Recognition has been an issue. Those who have both myalgic encephalomyelitis, ME, and fibromyalgia often have the conditions for quite an amount of time without realising they have these conditions. In many cases, they are diagnosed with mild fatigue or stress-related fatigue. We know that with the majority of illnesses, early intervention is crucial in establishing an effective treatment plan. This is where there is a need for public awareness. I know there is a publication on the HSE website but one wonders about the general population's knowledge or awareness of this issue.

Deputy Gino Kenny has called for the reform of the long-term illness scheme. It does not make sense why that scheme cannot be reviewed because treatments and medicines are constantly changing. Surely the review must keep up with that. We need flexibility when those changes are needed. Deputy Gino Kenny sets out some very practical and modest calls on the Government to take steps that could improve the lives of people who suffer from this condition. Surely this is what we are all about. We want to see a better quality of life for people suffering from an illness and fibromyalgia is one of those illnesses. I always find it very frustrating when we have statements or Private Members' business because we get a lengthy paper on it and the general reaction is "Tá" or "Níl" yet within those papers there are aspects on which we could all agree. There is a need to look at some of those, even to make a start with the smaller and more modest requests that are being made for those people who are suffering.

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