Mr. Shay Kearns:

My apologies for the delay. I, along with parents of children with cochlear implants, am here to discuss the topic of bilateral cochlear implantation in Ireland, particularly with regard to children born with hearing loss. A cochlear implant is a technology that provides people who are born with hearing loss, or who have damaged hearing nerves in their inner ears, through tiny hair-like fibres that transmit sounds into brain waves. It is implanted into the inner ear and enables people to regain a level of hearing that allows them to speak and to hear what is being said to them.

Ireland's implant programme was set up in 1995 and is linked to a group of 28 cochlear implant centres located between Ireland, Northern Ireland and the UK. The centres are governed by the National Institute for Clinical Excellence, NICE, medical guidelines. In 2009 the NICE issued a report that supported the provision of bilateral implantation as a minimum standard for implant recipients. As of today, Ireland's cochlear implant centre is the only one of the 28 centres that does not provide a bilateral implantation programme.

The standard practice of bilateral implantation stretches beyond Ireland and across the world. To put the matter in perspective I shall give an extensive list of some of the countries within Europe that provide a bilateral programme. These include the UK, Norway, Denmark, France, Germany, Sweden, Switzerland, Holland, Belgium and Spain, as well as countries further afield such as Iceland, Australia and the US, and, in particular, as near as Belfast in Northern Ireland.

The NICE guideline recommendation in 2009 included a request to review the bilateral programme. A review was completed in 2012 and its results were issued in April 2013 which favoured a bilateral implantation programme. The most evident results were in the areas of sound localisation, speech perception and a general higher quality of life.

Let us consider a child trying to distinguish what his or her teacher is saying in a noisy classroom and, as an adult, moving to a working environment yet still struggling to localise or perceive sounds. For a child to progress and reach his or her potential, enter employment and give back to the State, a second implant is very important. The issue is about more than simple hearing. It is about providing these children with the opportunity to reach their potential, integrate into mainstream society and make a positive contribution to the State.

The April results highlighted the urgency with which second implants should be provided. Children will gain the greatest benefit if they receive a second implant within the first four to five years. That is critical because the hearing nerve must be stimulated. A single implant stimulates the hearing nerve on one side but the hearing nerve on the other side may become redundant. The benefit to be gained from a second implant within four to five years reduces with each passing day. A person can go from an ability to distinguish what people say word for word to just hearing a mumbled sound, so time is of the essence.

I am speaking here about sequential implants, where one follows the other. Simultaneous implantation means two implants are provided at the same time. The easiest thing to do would be to roll out a simultaneous implantation programme and ignore sequential implantation.

I wish to point out that sequential implants are very important. At present, 350 children qualify for sequential implantation and it is expected that between 200 and 240 may avail of it. The remainder fall into a number of different categories. As I said before, adults may not want a second implant because their window of opportunity has passed and they will not benefit from the procedure. Time is not on our side.

On many occasions the lead consultants for cochlear implants in Ireland have requested support for the roll-out of a bilateral programme. Due to longer waiting lists and an increased number of families involved, parents have voiced their concerns and support. I am glad to say that the consultants, Dr. Laura Viani and Dr. Gary Norman, together with senior members of the HSE, led by Ms Laverne McGuinness, have engaged positively with parents and have worked towards a solution. That is significant because three different parties were involved and conflict can arise when multiple parties are engaged in negotiations. However, in all of the meetings that we had with the HSE and the consultants, everybody agreed that the programme needs to happen and move forward.

Following the meetings a business case was compiled based on a report. The HSE agreed to bring over two specialists from the UK, Professor Gerry O'Donoghue and Ms Julie Brinton, who assisted in the roll-out of the UK and France bilateral programmes. They have ratified what Irish consultants have said and identified what needs to be done. The business case has been submitted. My group has come here today to lend our support. We want action taken as soon as possible. We also wish to highlight the urgency of the programme. The backlog will continue to grow as long as the matter is not addressed. Staffing levels in Ireland's implant centre are a fifth of those in a comparable implant centre in the UK that covers a similar headcount. Equipment is being provided by parents through private fund-raising.

Recently the HSE rolled out the successful newborn hearing test screening that will identify children with hearing loss. I know how effective the scheme is from personal experience. My six-week-old daughter was born on a Friday and underwent the newborn hearing test the next day, Saturday. It is important to follow the test with follow-on care in order to give children an opportunity to move forward and reach their potential. There is no point in identifying them today but leaving them to enter an inadequate system.

The solution is simple and everybody wants to reach the same destination. We need the committee to lend its support to the business case and secure approval and funding in order to allow consultants to get on with what they do best, their job. There is the statistic that 90% of deaf children are born to hearing parents and each child will probably be the first deaf person his or her parents have met. Therefore, one can be sure those parents will raise this issue continually. After I leave this office they will be back here knocking on the door.

Deafness can happen to anyone. Little did I know three years ago that I would be seated here to talk about cochlear implants to the committee. These are normal children with a sensory loss that can be treated. A cochlear implant is a wonderful piece of technology and the children have an opportunity to receive them. An implant is a wonderful gift that the Government can provide to children. I ask the committee to lend its support to the business case and push it through.