Ms Linda Glennie:

I thank the committee for the opportunity to make this presentation. The Meningitis Research Foundation represents around 1,200 families in Ireland that have been affected by meningitis and septicaemia. I am here to talk about meningococcal infection which is the leading cause of meningitis in Ireland. As members of the committee can see from the first slide, the people of Ireland suffer far more from this illness than anywhere else in Europe.

The next slide tells us a bit more about the disease. It is a deadly, disabling and disfiguring disease. Meningitis happens when bacteria inflame the protective covering of the brain, resulting in swelling. This can cause damage to brain tissue which can be irreversible. Septicaemia happens when bacteria attack the lining of the blood vessels leading to shock, which is rapidly fatal in 20% to 50% of cases. Widespread clotting throughout the body can cause amputations and damage to organs.

The second photos shows that is what is happening to the little girl's tissues. Unfortunately, that little girl went on to lose both legs and parts of both her hands to meningococcal septicaemia. It is the leading infectious cause of death of children in Ireland. There are long-term after-effects for about one in three survivors. For obvious reasons, it is top among illnesses feared by parents. This is because it is so devastating and because it strikes so suddenly, mainly at healthy children, so one cannot predict who will be affected. The onset is so rapid that there is only a brief window for effective medical treatment. Because the effects are so dire, the cost can be staggering.

The third slides deals with the after effects, which differ depending on whether the person has been affected by meningitis where the damage is mainly neurological or due to damage to the ear. In the case of septicaemia, the damage is obviously down to tissue and organs. The effects range from very damaging and permanent effects, in the worst cases where children have such severe brain damage that they are never able to lead an independent life.

Even children who are less severely affected can have the sort of subtle cognitive and psycho-social problems that will have an educational impact and will limit their educational attainment. This will have a major impact on their quality of life and the lives of those around them.

I will touch briefly on the fourth slide, which deals with work done in the United Kingdom which examined very severe cases of meningitis and septicaemia. One can see that the cost - not only the cost of the distress caused but also the cost of treating these children, plus the long-term medical costs to the State of specialist equipment and specialist education as well as direct social care costs - can amount to more than €5 million over a lifetime for a child severely affected by meningitis or up to €4 million for a child affected by septicaemia. There are also high costs with regard to litigation. Fortunately, this is rare, but it is a disproportionately high cost both in terms of the number of cases brought and, even more so, in terms of the payouts.

Early diagnosis and treatment are vitally important. Major advances are not likely through improvements in this area because it is so difficult. With regard to early symptoms, people know about the rash. We have done a great deal of work over the years to draw attention to and educate the public about the symptoms so that people can get help early if they think that they or their children have the illness, but the early symptoms resemble milder illnesses. Even the best-trained general practitioners will miss cases. Some 50% of cases are sent home the first time they present to their general practitioner. There is only a short window for effective intervention and it is difficult to improve matters based only on earlier diagnosis and better treatment. Hopefully, the guidelines put out by the Health Protection Surveillance Centre earlier this year will make a big difference in enabling better diagnosis and better treatment, but in terms of making major advances, the solution is prevention.

The seventh slide shows the impact that the Hib, Haemophilus influenzaetype b, vaccine has had over the years. The record of meningitis vaccines in Ireland shows what immunisation can achieve. Hib, which was once the leading childhood cause of meningitis, has now been almost eliminated.

The following slide shows the incidence of meningococcal disease in Ireland when the MenC vaccine was introduced. Meningitis C was once nearly as common as meningitis B and it has now dwindled to only a handful of cases. As Dr. Bonner stated earlier, there have been no deaths from meningitis C since 2008. That has been a triumph. It is fantastic. Pneumococcal vaccination has also had an impact. It has reduced the number of cases of pneumococcal meningitis in young children, which is great.

For decades group B streptococcus has been the leading cause of meningitis and although cases, coincidentally, are at a fairly low point, the disease circulates unchecked. There is nothing to control it - we have 100 cases this year and we could have 200 cases next year. One can see that over the past decade, we have seen 100 to 200 cases a year resulting in five to 15 deaths, and probably 30 to 60 persons with long-term effects that can prevent them growing into adults who can have a reasonable quality of life, contribute to the economy, etc. In this report from the Health Protection Surveillance Centre, the author stated that meningitis will remain a major public health problem until a MenB vaccine that is effective in children is available. However, we are actually at this point at last. Last month the European Medicines Agency announced a positive opinion on the first ever MenB vaccine, and a licence is due next month or in February. We are hopeful that at last the means exist to put an end to this terrible disease. We have high hopes for it and we urge the Government to ensure that the vaccine is introduced without delay. The committee has seen how fantastic the MenC vaccine was.

It took seven years from the time that the pneumococcal vaccine was licensed for it to be introduced.