Oireachtas Joint Committee on Health and Children 7 th February 2013

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1 Page1 The (ISAT) is a voluntary, non-profit making, non-political advocacy and patient support group for sufferers (and their families) of Sleep Apnoea. ISAT was formed in 2000, following a patient meeting held in St. Vincent s University Hospital in 1999.

2 Page2 CONTENTS Page 3 Page 4 Page 5 Page 6 Page 7 What is Sleep Apnoea? How many people suffer from Sleep Apnoea Sleep Apnoea in adults Sleep Apnoea in children Summary

3 Page3 WHAT IS SLEEP APNOEA? Sleep Apnoea (apnea - US spelling) is a respiratory sleep disorder where the sufferer frequently stops breathing during their sleep. Breathing cessations last for at least ten seconds and may be accompanied by a drop in blood oxygen saturation levels. The name Sleep Apnoea is derived from Apnoea a Greek word meaning, without breath. Sleep Apnoea 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 (OSA); which is caused by an obstruction of the patient s airway or weak tissue in the airway causing the airway to collapse during sleep. This is the most common form of the condition. Central Sleep Apnoea (CSA); where part of the brain that controls ones breathing fails to function routinely. This is quite rare. Mixed Sleep Apnoea (MSA); a combination of Obstructive and Central Sleep Apnoea. This is not very common. Severity of the condition is measured by the Apnoea Hypopnoea Index (AHI): Mild Apnoea: AHI within the range of 5 to 15 Moderate Apnoea: AHI within the range of 16 to 30 Severe Apnoea: AHI above 30 People with untreated obstructive sleep apnoea face very serious health risks: Excessive Daytime Sleepiness (poor work performance, high risk of road traffic accident) Increased risk of cardiac disease and stroke Increased risk of Diabetes Increased risk of Glaucoma Symptoms of untreated Sleep Apnoea include the following: Severe snoring, hypertension, diabetes, severe mood swings, excessive daytime sleepiness, impaired cognitive function, impaired short term memory, Nocturia. Treatment is by way of a Continuous Positive Airway Device (CPAP) and in some cases an Oral Appliance is successful in treating it. Both treatment options offers excellent value for money and patients are treated in their own home.

4 Page4 HOW MANY PEOPLE SUFFER FROM SLEEP APNOEA Population Studies carried out in the 1990 s 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. Taking the most recent Census information these percentages equate to the following numbers: % of population 1990 s studies Present Day 4% Adult males 70,800 2% Adult females 36, % children 4,900 29,000 Totals 112, ,800 Taking a best case scenario, there are a significant number of people in Ireland suffering from Sleep Apnoea. The large increase in the number of children suffering from this condition is of major concern.

5 Page5 SLEEP APNOEA IN ADULTS The current position in Ireland is that a number of Health Service Executive (HSE) managed and voluntary hospitals offer an ad hoc type of sleep 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 disorders beds. In many cases diagnostic testing is suspended when an acute hospital finds itself busy in other areas such as A & E. Typical of this is a current problem in Dublin where, probably 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. ISAT have met with the CEO of the Hospital, who has no money and the HSE have not responded to correspondence. Beaumont Hospital, their sleep disorders unit is located at St Joseph s Hospital, Raheny, has been closed since mid-december last as there is a perceived safety issue. Since sleep studies have been suspended there, we have a situation where up to 100 patients are 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, in Ireland. The diagnostic work is carried out by Respiratory Consultants, who give up a percentage of their time to deal with this. 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 GP. ISAT have pleaded with two Health Ministers to introduce a National Strategy to deal with this problem, to no avail. Only recently, the Road Safety Authority (RSA) has issued new guidelines to General Practitioners (GPs) on Fitness to Drive for Group 1 drivers. On page 56 of this document is a section covering Sleep Apnoea. It states that drivers who suffer from symptoms and are sleepy must not drive and must report this to their Driving Licence Authority. GPs are not qualified to diagnose this condition and with an ad hoc sleep disorders service, whose capacity is being reduced we fail to see how these regulations can be enforced, particularly if a suspected sufferer of sleep apnoea may have to wait up to 12 months to get officially diagnosed, never mind to get treated. It is an absolute must that a National Strategy is introduced without further delay.

6 Page6 SLEEP APNOEA IN CHILDREN The situation for children with Sleep Apnoea is even worse than that of adults. Sleep Apnoea in children is a very different condition to that in adults. It is frequently associated with conditions like ADHD and approx. 45% of children with Downs Syndrome are likely to develop the condition. There is no structure at all, with a number of hospitals offering ad hoc services. 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 Hospital for Sick Children, Crumlin Temple Street Children s Hospital Adelaide and Meath Hospital, Tallaght Cork University Hospital Galway University Hospital Mid Western Regional Hospital, Limerick We believe that Paediatric Units in Mullingar, Cavan and Drogheda have shown an interest. In many cases these centres cannot offer the full overnight sleep test (Polysomnogram) and rely on the less reliable Oximetry test. To give an idea of the scale of the problem nationally: In 2007 there were 433 tests carried out (Polysomnograms and Oximetry). In 2011 there were 1,793 tests carried out, 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 8 months Waiting times for Polysomnograms are over 12 months. This is no way to treat our children. A National Strategy is required as a matter of urgency. It wouldn t take very long to put one together and the cost factor could be quite low.

7 Page7 SUMMARY The diagnosis and management of Sleep Apnoea is something that cries out for the introduction of a National Strategy, both for adults and 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%. Taking 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 and as a nation these decisions must be supported. From a children s perspective, it is even more serious. To have a situation where we continue to ignore the plight of up to 3% of our children is unacceptable to ISAT, and I suggest, the people of Ireland. 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.

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