Mr. Dan Smith:

The Irish Sleep Apnoea Trust, ISAT, was formed in 2000. We are non-profit volunteers, and we do not receive any State funding.

Sleep apnoea, which we spell the old Greek way, namely, A-P-N-O-E-A as opposed to A-P-N-E-A, the American spelling, is a respiratory sleep disorder in which the sufferer frequently stops breathing while he or she sleeps. Breathing cessations last for at least ten seconds and may be accompanied by a drop in blood oxygen saturation levels or even a cardiac event.

The name "sleep apnoea" is derived from "apnoea", a Greek word meaning "without breath". It is a very serious medical condition, which in its severest form can cause premature death.

There are three main types of sleep apnoea: obstructive sleep apnoea, which is the most common and is caused by an obstruction or collapse of the airway; central sleep apnoea, a neurological condition in which the brain forgets to tell the body to breathe, which is very serious but very rare; and a mix of the two.

Severity of the condition is measured by the apnoea-hypopnoea index, AHI, which measures cessation of breathing per hour. Anything within a range of five to 15 is mild, 16 to 30 is moderate, and above 30, which equates to a cessation in breathing 30 times every hour during sleep, is severe.

There are serious health risks involved with this condition, including excessive daytime sleepiness, which leads to poor work performance and a high risk of road traffic accidents; increased risk of cardiac disease and stroke; increased risk of diabetes; and increased risk of glaucoma. The symptoms include severe snoring, hypertension, diabetes, severe mood swings, excessive daytime sleepiness, impaired cognitive function, impaired short-term memory, and nocturia, which involves frequent bathroom visits during the night.

Treatment is very simple and is by way of a device called a continuous positive airway pressure, CPAP, which splints the airway open by an airflow which is set at a particular pressure. There is also a device called an oral appliance made by a specially qualified dentist, which draws forward the lower jaw. This has proved effective in dealing with mild and possibly moderate apnoea.

Population studies carried out in the 1990s indicate that 4% of the adult male population, 2% of the adult female population and 0.5% of children suffer from sleep apnoea. More recent studies indicate that up to 10% of the adult population and 3% of children suffer from sleep apnoea. In the case of children there is a very close link to those with Down's syndrome, 45% of whom are likely to develop sleep apnoea.

In terms of figures, studies in the 1990s found that there were up to 112,000 sufferers in Ireland, and the figure could be as high as 360,000. If we take the best-case scenario, there is a significant number of people here with the condition. The large increase in the number of children suffering from this condition is of major concern.

I will now deal with the condition as it relates to adults and then in the paediatric area. The current position is that a number of HSE-managed and voluntary hospitals offer an ad hoc type of service. There is no national structure or framework for dealing with the condition in the public health system. The type of service offered varies from hospital to hospital, with only one HSE hospital offering dedicated sleep disorder beds. In many cases diagnostic testing is suspended when an acute hospital finds itself busy, usually through a busy night in the accident and emergency department. Typical of that is a current problem in Dublin in which possibly the largest unit in the country, at St. Vincent's University Hospital, has had its staff reduced and is facing the prospect of a vastly reduced service from June of this year; it is looking at halving the service. The ISAT has met with the chief executive officer of the hospital, who has no money, and the HSE has not responded to correspondence.

The Beaumont Hospital sleep disorder unit is located at St. Joseph's Hospital, Raheny. I might add that that public unit was funded by private sources.

It has been closed since mid-December last as there is a perceived safety issue. I do not know what it is. Since sleep studies have been suspended there, up to 100 patients have been left in limbo. There are similar problems throughout the country. It should be pointed out that there are no sleep medicine consultants employed by the HSE. The diagnostic work is carried out by respiratory consultants, who give up a percentage of their time to deal with the condition.

There are many clinical studies available which prove that sleep apnoea patients who are being successfully treated are less likely to develop cardiac conditions, are up to 33% less likely to have a stroke and usually have fewer visits to their GPs. ISAT has pleaded with two Ministers responsible for health to introduce a national strategy to deal with this problem, but to no avail.

This year, the Road Safety Authority has issued new guidelines to general practitioners on fitness to drive for group 1 drivers. On page 56 of this document, there is a section covering sleep apnoea. It states drivers who suffer from symptoms and are sleepy must not drive and must report this to their driving licence authorities. General practitioners are not qualified to diagnose this condition. With an ad hocsleep disorder service whose capacity is being reduced, we fail to see how these regulations can be enforced, particularly if a suspected sufferer of sleep apnoea has to wait up to 12 months to be officially diagnosed, and longer to be treated. It is an absolute must that a national strategy be introduced.

The situation for children with sleep apnoea is even worse. Sleep apnoea in children is a very different condition from that in adults. It is frequently associated with conditions such as ADHD, and approximately 45% of children with Down's syndrome are likely to develop the condition. There is no structure at all, with a number of hospitals offering ad hocservices. There are no sleep consultants employed by the HSE. As with adults, a number of respiratory physicians coupled with respiratory scientists offer very limited services. The following hospitals offer some degree of service: Our Lady's Children's Hospital, Crumlin; Temple Street Children's University Hospital; the Adelaide and Meath Hospital, Tallaght; Cork University Hospital; Galway University Hospital; and the Mid-Western Regional Hospital, Limerick. We believe the paediatric units in Mullingar, Cavan and Drogheda have shown an interest. In many cases, these centres cannot offer the full overnight sleep test - a polysomnogram - and rely on the less reliable oximetry test.

Let me give an idea of the scale of the problem nationally. In 2007, 433 tests, both polysomnograms and oximetry, were carried out in paediatric units. In 2011, 1,793 tests were carried out, representing an increase of 414%. The number of children on non-invasive ventilation increased by 627% over the same period. Waiting times for oximetry testing are in excess of eight months and waiting times for polysomnograms are over 12 months. It is no way to treat our children. A national strategy is required, be it produced jointly or severally.

The diagnosis and management of sleep apnoea cries out for the introduction of a national strategy, both for adults and for children. From an adult perspective, the introduction of fitness-to-drive guidelines for group 1 motorists places additional pressure on what is a fractured clinical service that has been starved of resources over the years. The proposed introduction of fitness-to-drive guidelines for group 2 motorists next year will create an even bigger strain on the service, as it has been proven by a number of recent studies that the incidence of sleep apnoea in professional drivers is as high as 28%. From this perspective alone, there is an undeniable case for a national strategy to deal with sleep apnoea. After all, these guidelines have been introduced by a national regulatory body. As a nation, we must support these decisions. From a children's perspective, it is even more serious. For us to ignore the plight of up to 3% of our children is unacceptable to ISAT and the people. There is absolutely no excuse for it. With the use of modern technology and committed people, the cost factor of a national strategy can be controlled.