Wednesday, 27 September 2017
Topical Issue Debate
I welcome the people who came from around the country today to protest at the Dáil. They had a presentation in the AV room, which was excellent. It was heartbreaking to hear their experiences, particularly those of one farmer whose life was turned upside down when both he and his young sons got Lyme disease. The one point I want to raise is the lack of early diagnosis. People have to get diagnosed themselves. They have to leave Ireland and go to Germany or America, and must raise a fortune if they do not have the money themselves. They have to beg, steal or borrow it. When they get the diagnosis, they come back to Ireland and it is not recognised here. That is wrong. It should be recognised here. The HSE should be doing more for early detection of this problem and should be recognising it.
The figures that are being given out by the HSE are totally wrong. We know they are wrong because for the numbers they are saying that have Lyme disease, we have that many in Kerry already, not to mind the rest of the country. We have people from Rathmore, Killarney, Killorglin, Castleisland, Cordal, Duagh and many other parts of Kerry who are affected with this terrible disease. A young girl, who gave all her years to qualifying in college, is in Germany being treated for Lyme disease. As Deputy Michael Healy-Rae said, they have blood tests here and the tests come back saying they do not have Lyme disease. Every other kind of disease is attributed to these patients rather than Lyme disease. When they go to Germany, it is recognised and accepted that they have Lyme disease. Many of them have to stay in Germany or go to America.
This disease should be recognised. If they have to go for treatment to these countries, let the HSE pay for it. Other diseases are paid for and this disease has to be recognised and treated accordingly.
Lyme disease is currently the fastest-spreading tick infection in the world. Some 50% of Lyme disease cases in Ireland are detected in the south west. What is also very disturbing, as my two colleagues have said, is that there is a lack of standardisation regarding detection. The Government and the State have not adopted the same urgency that Germany has, which is foremost in the world in respect of detection. People have to go to Germany and get their tests done and get the treatment that should be done in this country. They can also go to Portadown in the Six Counties and get it done that way.
I am asking the Minister of State to agree on a form of standardisation within the EU as regards the treatment and detection of Lyme disease. If that is agreed and done, it will be a way of resolving the problem for so many of the people who travelled here today to try to get this issue addressed.
I thank the Deputies from Kerry for giving me the opportunity to update the House on this matter. Lyme disease is an infection caused by a spiral-shaped bacterium called borrelia burgdorferi. It is transmitted to humans by bites from ticks infected with the bacteria. The health protection surveillance centre of the HSE has extensive information concerning Lyme disease on its website. The infection is generally mild affecting only the skin, but can occasionally be more severe and highly debilitating. Many infected people have no symptoms at all. The most common noticeable evidence of infection is a rash called erythema migrans- a red, raised skin rash, often called a bulls-eye rash. People can also complain of flu-like symptoms such as headache, sore throat, neck stiffness, fever, muscle aches and general fatigue.
Lyme disease is diagnosed by medical history and physical examination. The infection is confirmed by blood tests which look for antibodies produced by an infected person’s body in response to the infection. In general, it is accepted clinical practice in Ireland, the UK, Europe and North America that laboratory confirmation is unnecessary for a confidently made, clinical diagnosis of erythema migrans.
In Ireland, treatment by most clinicians is based on that laid out in evidence-based guidelines for the management of patients with Lyme disease published by the Infectious Diseases Society of America in 2006. Lyme disease can be very successfully treated using common antibiotics. These antibiotics are effective at clearing the rash and helping to prevent the development of complications. Antibiotics are generally given for up to three weeks. If complications develop, intravenous antibiotics may be considered.
Misinformation concerning the long-term effects of Lyme disease is causing real harm to people who may seek inappropriate treatments. There is no evidence that viable borrelia burgdorferi persists in patients following confirmed Lyme disease. I am aware of people travelling to other countries and spending large amounts of money on treatment for so called "chronic Lyme disease". Chronic Lyme disease lacks an accepted clinical definition, and in practice the term has been applied to a wide variety of patients. These symptoms are very common in the general population, and the evidence does not show that they occur any more commonly in patients with a history of Lyme disease. The diverse natures of these symptoms, which can have both physical and psychological causes, are shared by many conditions. The majority of patients referred for chronic Lyme disease have no objective evidence of the infection, and most often have an alternative medical diagnosis or a functional syndrome such as fibromyalgia or chronic fatigue syndrome. As diagnosis and treatment of Lyme disease are available in most of the larger hospitals in Ireland, there is no need for anyone to travel abroad to access them. I advise anyone suffering from these symptoms to seek advice from their family doctor and referral for appropriate evidence-based treatment.
What I am going to say is in no way a personal attack on the Minister of State, but I am outraged at that response. Telling people who have gone abroad for treatment to Germany - who cannot get a diagnosis here and who are seriously ill - that they have fibromyalgia is outrageous. I thank the people who travelled here today from around the country and particularly my own friends and colleagues who came from County Kerry. If they were in the Chamber to hear the Minister of State say what he just said, they would be outraged beyond belief. His statement is telling these people they are not really sick.
We heard from patients who were told by their doctors that maybe it was a bit of a problem upstairs they actually had. They then went away and got a diagnosis of Lyme disease. They were treated for Lyme disease. The good gentleman farmer we met today, a lovely man who broke all our hearts when we heard his story, thankfully is on the road to being cured. His child's fingernails had fallen out and his hair was falling out. Now he is cured. If the Minister of State were to tell those people that they had fibromyalgia, they would be outraged.
I am not directing this at the Minister of State personally. I know there would have been people in the HSE who had to okay this and it is their wrong, not of the man who uttered it today. It is not his fault but this is balderdash. This is nonsense. This is not the answer to the debate that myself and Deputies Danny Healy-Rae and Martin Ferris wanted to bring to the attention of the Minister of State. It is not the answer.
The problem is with the person or people who wrote this reply for the Minister of State. The former Taoiseach, Deputy Enda Kenny, in a reply to me, recognised that something had to be done to improve the service, medicine or whatever for these people.
It was wrong to suggest there was something wrong in people's minds but this is what many of them were told. It has to be changed. How is it that they can be cured in America and Germany but we cannot cure them here, or even diagnose them? We cannot even accept the results of blood tests from Germany. What is wrong with the HSE and the health service? Why do we have to fight like this to get rights for these people?
It is well known where the ticks are coming from. They are coming from deer and the country is overrun with them. Anyone who has any contact with the national parks or forests are picking them up there and something needs to be done in that regard too. People need to be warned that they may be liable to pick these ticks up if they go into these areas. The HSE needs to wake up.
I thank the Minister of State for a non-response. I do not mean this in a personal way as the response was clearly written by a civil servant to protect the inadequacies of the HSE and the injustices perpetrated by it and the State. Everybody we spoke to today has had a family member with the illness or has had it themselves. Everybody we spoke to told us that the German model is the most efficient and the best to follow to deal with the illness. I did not realise it was so simple but intervention with a treatment of antibiotics at an early stage is a solution. We need to set up specialist centres to deal with it and it is within the power of the Government to do that. The rubbish we have been given by way of a response today, and which the Minister of State was given to come into the House and read out, does not in any way address the issues. It is hiding behind the HSE and a profession that has been discredited by what has happened to the people we met today.
I ask the Minister of State to go back into the system, starting with the setting up of a specialist centre to identify the cause, and work with the German model, which is the most successful in Europe and probably the world, to resolve the issue.
I accept that no Deputies are being personal in this matter. I have heard their concerns and know that all three are very genuine. I am not going to get involved in the clinical argument as that is not my role or function. However, I will take the concerns, raised on the floor of the House, back to the Department and discuss them with the senior Minister, Deputy Harris, to see if I can get further explanatory notes for the Deputies. I will take on board their concerns and I acknowledge they are talking about real people. It is their duty to represent them inside this House and I will do my job to ensure their representation goes all the way back to the Department, where it matters.