Members have copies of my presentation. I will not read it verbatim but will follow its logic. We have included some background information to put our call for newborn screening into context. Even though newborn hearing screening is not a complex procedure, it is done in fewer than 40 centres and that number is being reduced under the new health plans.
At present, approximately 66,000 babies are born in Ireland each year. Approximately 85 of these will be deaf and a further 150 will have various levels of hearing loss. They will join an existing community of 5,000 deaf people and 100,000 hard of hearing people. We provide services to this community daily. The adult life experience of a deaf person, which has not only been researched and documented but also experienced by us on a daily basis, is one of low language acquisition levels, poor reading skills, high levels of illiteracy and reduced educational achievement. Research indicates an average reading age of nine years among deaf children with normal levels of intelligence. That obviously develops into poor levels of employment and long periods of unemployment. A deaf person will earn approximately 67% of the average industrial wage, usually because communication difficulties mean they never receive promotions beyond entry level. It is a matter, therefore, of under-employability.
Owing to the higher levels of mental health and anxiety disorders among deaf people, we also provide a mental health and deafness service. It is not widely known, although it is well documented, that deaf people suffer from poorer general health, principally because of the communications issues which arise between doctors and patients. When a patient visits a doctor, poor communication means that general issues are often not addressed. It is also the case that deaf people do not visit doctors as often as the general population. In summary, we are talking about a life of social exclusion and reduced chances.
We should be trying to prevent these problems from arising rather than constantly trying to fix them. In that regard, delays in diagnosis are a much more disabling factor than deafness itself. With early diagnosis, communication patterns can be developed between parents and children, hearing aids can be fitted and other early interventions can be made, all of which make for a better life outcome.
The problem as we see it is that in Ireland since the 1950s, hearing loss has been screened by means of a distraction test, in which a sound is made to make the child look at the tester. However, because children often fail to respond to the test for reasons such as inattentiveness or sleepiness, the Health Service Executive estimates that 50% of deaf children are missed. The test also results in the frequent referral of children with perfect hearing for audiological testing. One might as well flip a coin. While the test was of some use from the 1950s until the 1970s, modern technology allows for the fail-safe detection of hearing loss hours after birth. We should be testing at that stage rather than waiting for six-week or nine-month clinics. In the south east, there were no developmental clinics for a period of two years, with the result that an excessive number of referrals were made to the regional audiologist. Expensive audiological time is, therefore, being used to screen out those who do not have hearing problems rather than dealing with children who do.
The average age of hearing loss in Ireland has increased over the past 30 years from 13 months to between three and four years. That is partly due to a lack of organisation within the audiology service. Previously, a single national service was provided which worked very well, but the service has become fragmented. In 2005, the majority of children in north Dublin who were fitted with hearing aids for the first time were of school age, according to the HSE. In effect, we are wasting people's life chances. It has been our experience that parents suspect hearing loss from an early point in their child's life, yet they must wait up to four years before receiving confirmation. The child, therefore, fails to develop adequately. In other words, it is the delay, not the deafness, that disables.
The reason for that is because neuronal pathways, or the brain's pipework, are developed in the first year to 18 months of life. Once these pathways have developed, the neurolinguistic ones in particular, a person's capacities are defined for life. At birth, a child has almost 100% potential but by the time we start working on the neuronal pathways, they are already set or diminished to some degree, so we have to play catch up. The child's development is, therefore, wasted and his or her future chances are affected. We suggest screening for newborns principally because detection will be early enough to inform parents on how to improve the situation. Hearing aids or cochlear implants can be fitted as early as four months and parental anxiety would also be reduced by early detection.
With regard to the economic loss to the State, it is estimated in the UK that the lifetime cost of a deaf person is £1.2 million, while in the US the cost is estimated at more than $1 million. As someone with a background in health economics, I would not dispute those figures. The cost to the individual in terms of lost income or social opportunities is also high. Research in the US and the UK demonstrates that universal newborn hearing screening pays for itself in less than four years and thereafter saves money. Researchers have predicted on the basis of a 75-year average lifespan that savings of $7 billion could be made in the US. In Ireland, the HSE estimates that it would save the annual equivalent cost of 50 public health nurses, who could be gainfully employed in other areas. At present, 80% to 90% of audiologists' time is wasted on people incorrectly referred to them when they could be rehabilitating deaf children.
In 2004, the Programme of Action for Children published research on the introduction of universal neonatal screening which stated that the ensuing benefits for children with severe hearing loss made a compelling case for the introduction of a programme. It also argued that a programme should be introduced as a matter of urgency. Unfortunately, we have not yet experienced any such urgency. Universal newborn health screening also appears to cost much less than the distraction test.
There has been some discussion over whether one should target screening for high-risk children. That idea is being touted. All research, including Irish research, shows that targeted screening, which catches only 6% to 8% of babies at risk, will miss 40% to 50% of deafness cases. Therefore the cost of one deaf person missed more than covers the cost of doing this universally. The only way to do it is to include the whole population. With UNHS there is equipment with a little probe that one puts in the baby's ear. Within two to three seconds it sends a pulse down, checks whether the cochlear works and receives a pulse that gives a read out. The baby can only pass or fail and it takes only seconds. It is non-invasive, takes only one person and does not require a skilled audiologist, qualified nurse or an ear, nose and throat, ENT, person. It can be done at a much less costly level and could be done at maternity hospitals or, given the current discharge times, on quick follow up in the community. It can reduce the age of diagnosis to below three months and the age of fitting a hearing aid to four to six months. That is a significant improvement on the current situation. It is a low-cost, highly accurate and specific test and the beauty is that it is easy to implement and does not require much training.
It has been noticed that people who are screening need to be dedicated screeners, because they improve as they go along. Initially they will send approximately 4% more people for audiological diagnosis than are deaf. My colleague Mr. Brendan Lennon tells me that in Northern Ireland, where they have been doing this for several years, they are referring less than 1% more people than are deaf, which is much different from the 95% we have.
We are the laggards in Europe. Even the accession states have UNHS. Nigeria recently announced that it would introduce it. We have been working on this since 1992, when the equipment was not as good as it is now. Since 2001 we have failed to make any impression on the Department of Health and Children. We have had a little more success with getting the HSE to understand that this should happen. Everybody agrees it should happen but it does not appear to be anybody's job to push it along.
It will cost approximately €5 million per year to implement this with another €1 million to be invested in audiology and early intervention services. Within four years that cost is recouped and after that a saving is made. The €5 million it costs to implement is not an additional cost but a displacement of the existing wasteful costs and a step towards a more efficient system. The report on introducing neonatal screening sets out what the programme will require in terms of co-ordinators, screeners and administration and the protocols to be used. It sets out what should be done and how to do it, but has not committed any resources. Last October the HSE made a commitment to us that this would begin this year. I can understand that its structures do not allow it to introduce this. Rather than seeking the almost 60 posts mentioned in their budget, the HSE is seeking two and has, after a year and half, identified the funding for two posts. Unfortunately it cannot find, within its 100,000 staff, two posts it can sacrifice to this. This will not happen within the HSE.
We suggest, and we ask the committee to recommend, that a budgetary line be put under this, that it be set up and run as a project with deliverables, outcomes and supports and that it start this year. War-torn Croatia, which has a similar population size to Ireland, rolled out newborn screening in 12 months. We are still deliberating. We did not come this morning to make a case to the committee that screening is right. We came to seek a practical solution. How can we move to activity? Every politician in the House has supported this. Many have tried to get the Department of Health and Children to commit. Responsibility is floating between the Department and the HSE, and the HSE has not decided which section might take responsibility. I do not believe it can be delivered within the next five or six years just by hoping the HSE will find money in its budget and people in its staff. If it does, it will put in qualified staff, either audiologists, of which there is a shortage, or public health nurses. I suggest we operate a project with ring-fencing and clear operational time-lines, and get it moving. I hope this committee will support the case for UNHS and the practical solution to get it moving.
