Seanad debates

Wednesday, 4 February 2015

Commencement Matters

Disease Incidence

10:40 am

Photo of Thomas ByrneThomas Byrne (Fianna Fail)
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Gabhaim mo bhuíochas leis an gCathaoirleach as ucht an deis an t-ábhar tábhachtach seo a ardú. Bhí sé ar an sceideal an Déardaoin seo caite ach ní raibh mé anseo in am. Bhí me ceithre nóimead déanach an lá sin.

I rise this morning to raise an important issue that has caused considerable concern in the area of Duleek, County Meath, particularly in a small part of the village, and, according to media reports, in Mornington, which is about seven miles away. I refer to a number of cases of a disease called Guillain-Barré syndrome, which I will call GBS for short. The best description I can give of GBS is from a victim of the condition who wrote a little booklet on his experiences before he knew other people suffered from it in his area. He said:

That immune system of the body attacks the nerves going to and controlling the muscles. Instead of the signal from the brain telling the muscle to move, it goes to the outer skin where it feels like pins and needles, or severe nettle stings, all the while happening. The illness starts at the toes and feet, moves up the lower legs and sometimes reaches the neck area. Even the face and eyelids can be affected. All bodily functions are knocked out as it comes up the body. Bowel, bladder and lungs can also be affected.
Clearly, it is a serious disease, but fortunately it is a rare one. I understand that one can expect one or two cases per 100,000 people, not per annum but in total. There have been four confirmed cases of Guillain-Barré syndrome in the village of Duleek. I have met two of the people confirmed to have it, who are recovering. They are neighbours, and the other two confirmed cases live close by. There are two other cases in which GBS may be implicated, and the people affected live very close to the people who have been confirmed as sufferers. I am unfamiliar with the case in Mornington which was cited in media reports. Mornington is seven miles from Duleek.

The literature available on Guillain-Barré syndrome states that it is very rare, but there is also literature available that suggests that it can appear in clusters. There have been references in the literature to clusters occurring in China and Arizona. Environmental causes have sometimes been linked to outbreaks or clusters, but other issues are also involved. There is a medical trigger for GBS, which is usually an infection. I want to know why so many cases have occurred in one small area.

The clusters that have become apparent in other areas were over a period of many years and number only slightly more than the number of cases discovered in the small village of Duleek. This apparent cluster in Duleek, County Meath, and the general east Meath area appears to be quite significant. These people have been badly affected by GBS in the past year or two.

There are environmental concerns in the region. I will not outline them today, because it is not my role to blame anyone, if blame can be apportioned. Having talked to people who suffer from the disease, and in one case a person two years after he or she first acquired the disease, I know they are keen to discover the reason for the number of cases in the area. They are also keen that nobody else should suffer, because they have suffered hugely.

It is a deeply worrying time for everyone. I live within three miles of the two victims confirmed to have the illness - the two people I have met. The matter is deeply worrying for people in the area. We would like the HSE to conduct an investigation, which I understand has been agreed to. An investigation should include the EPA and Irish Water, because water has been blamed in some cases. I am not saying any one thing has caused it or has anything to do with the incidence of GBS. I am saying we should investigate all possible causes and do as much as possible. Another case of GBS has been discovered in the general Cavan-Meath vicinity. The case has been mentioned to me but I will not say where it is because I do not have the information first hand.

The incidence of GBS is of concern. Some of the clusters that have been reported in the literature over the years encompassed large areas, perhaps the same size as County Meath.

However, this is a very small area and if there are other cases in County Meath, it paints an even more worrying picture. I seek answers and for this investigation to proceed as quickly as possible within a short timeframe. It should bring in all the statutory agencies that may be relevant to it and try to get answers for these people.

Those who have been in the acute hospital services as a result of this have nothing but praise for the staff. It is important to mention this because this is an extremely rare disorder and the staff in Our Lady of Lourdes Hospital, Drogheda, have received high compliments from the two men I have met who are victims of this syndrome. I wished to put that on the record because the staff often get forgotten. However, the big issue in this regard is to ascertain whether there is a reason for this and, if so, to put an end to it.

10:50 am

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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I thank the Senator for raising this issue, because although the condition is rare, it is highly traumatic and upsetting for those who acquire it. Guillain-Barré syndrome is an autoimmune disorder in which the body's immune system attacks part of the peripheral nervous system. It usually occurs a few days or weeks after a person has had symptoms of a respiratory or gastrointestinal viral infection. The syndrome is slightly more common in men than women and can affect people of any age, including children. The syndrome is rare, afflicting only approximately one person in 100,000. It is estimated that 50 to 100 people are affected in Ireland annually. However, as Guillain-Barré syndrome is not a notifiable disease, there is no requirement for doctors to report cases. Guillain-Barré is called a syndrome rather than a disease because, as the Senator pointed out, there could be a lot of reasons and it is not clear that a specific disease-causing agent is involved. A syndrome is a medical condition characterised by a collection of symptoms, that is, what the patient feels, as well as signs, that is, what a doctor can observe or measure. As the signs and symptoms of the syndrome can be quite varied, doctors may, on rare occasions, find it difficult to diagnose it. Two thirds of people with Guillain-Barré syndrome are known to have experienced an infection before the onset of the condition. Most commonly, these are episodes of gastroenteritis or a respiratory tract infection. Approximately 30% of cases are provoked by Campylobacter jejuni, with a further 10% of cases attributable to cytomegalovirus. Despite this, only very few people with Campylobacter or cytomegalovirus infections develop the syndrome. Links to other infections are less certain. Most people make a full recovery within a few weeks or months and do not have any further problems. However, some people may take longer to recover and there is a possibility of permanent nerve damage. There are therapies that lessen the severity of the illness and accelerate the recovery in most patients.

I have been informed that officials from the Health Service Executive met members of local environmental groups from the Louth-Meath area on 28 January in Navan. These groups voiced concerns that a number of the cases were related to environmental issues in the Duleek area. However, it was clarified that the majority of confirmed cases of Guillain-Barré syndrome are linked to a previous episode of infection, a vaccination or a surgical intervention, rather than to environmental factors. The department of public health in the north east has agreed to follow up on these cases to try to identify possible causes for this apparent cluster of cases. This will include meeting with the individual patients in the near future to further that investigation. I hope that when these meetings take place, the concerns regarding whether this is water borne or whether there are other environmental issues will come up and, if there is need for further investigation, that this will be taken on board.

Photo of Thomas ByrneThomas Byrne (Fianna Fail)
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I take this opportunity to encourage anyone who may be a victim of this syndrome and who has not come forward to go directly to the HSE. They need not approach me, another politician or any local group. Such people can go directly to the HSE and ask that they be interviewed in this regard. The Minister of State has mentioned gastroenteritis, which I believe is associated with Campylobacter jejuni, as well as respiratory tract infections, and I suppose that some of the environmental concerns come from that. While nobody knows what is causing it at present, it is important that nothing is ruled out. We all are beginning to find out information on this subject about which none of us really had any knowledge until this matter came to light a few weeks ago. However, to be of help to the Minister of State, my understanding, based on some of the literature I have read, is that the vaccination issue arose back in the 1970s and it may no longer be relevant today. However, much research remains to be done. Certainly, however, I wish to ascertain what, if anything, can be done about this. I am not putting pressure on the HSE as such. It already has agreed to carry out an investigation, which is important, but it should be done as quickly and as comprehensively as possible.

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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It strikes me that the Senator is correct that it will be increasingly common, especially with the advent of Facebook and so on, that people will be able to communicate better with one another. I assume that people who developed this syndrome in the past would have felt quite isolated and would not have known there were other people with the same difficulty.

Photo of Thomas ByrneThomas Byrne (Fianna Fail)
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In this case, two neighbours did not know that they suffered from it.

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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Exactly. In the context of not knowing that other people suffer from a condition, Facebook and similar types of interactions most definitely are a help. On the other hand, like the Senator, I would not rule anything in or out because we are learning all the time. Equally, however, this makes the case for ensuring our water system is clean and safe.