Apologies have been received from Deputies Troy and Regina Doherty. I remind members and visitors that, as our microphones are sensitive, they should place their mobile telephones on aeroplane mode instead of silent mode.
Deputy Ó Caoláin will need to leave soon, as he will be speaking in the Dáil. He has apologised.
I must speak in the Seanad as well.
Yes. I will defer our discussion on correspondence and other business of the committee until next Thursday morning, which will be a regular Thursday meeting. Is that agreed? Agreed.
This meeting has been requested by Deputies Ó Caoláin and Mitchell O'Connor regarding cochlear implants. I welcome Ms Deanna Cairns, Ms Amie Connor, Mr. Shay Kearns, Ms Denise Martin and Ms Danielle Ryan. We are pleased that they could attend at short notice. They met the Minister just beforehand. They have been campaigning for bilateral cochlear ear implants. The committee will give them a good and fair hearing as part of their series of meetings this afternoon.
I remind witnesses of the provisions regarding privilege in respect of the evidence that they are to give to the committee. If they are directed to cease giving evidence in regard to a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice and rulings of the Chair to the effect that they should not comment on, criticise nor make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.
I invite Mr. Kearns to make his opening remarks. We have received a copy.
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 for people who are born with hearing loss who have damaged hearing nerves in their inner ears. These are 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.
I thank Mr. Kearns for his presentation. The rest of the delegation can contribute during the question and answer session. I call Deputy Ó Caoláin first because he must soon go to the Dáil Chamber.
I welcome Ms Danielle Ryan, Ms Denise Martin, Ms Deanna Cairns, Ms Amie Connor and Mr. Shay Kearns. I thank them for coming to meet us. It is important that the delegation knows that this meeting has been specially convened purely to accommodate it. The committee has had a very heavy workload over the past number of months and I pay tribute to all of my committee colleagues, of all political opinions, for their hard work. I can assure Mr. Kearns that he is talking to people who have open minds and hearts on this issue.
It is timely for us to meet the delegation immediately after it met the Minister for Health. Recently, across the floor of the Dáil, the Minister of State, Deputy Kathleen Lynch, and the Minister for Health acknowledged that we had won the case that we had presented in terms of the inclusion for provision of the scheme in the 2014 budgetary arrangements. I hope the delegation will be able to confirm that the funding is still on track following its meeting with the Minister a short time ago. We want to be sure that our efforts have complemented those of the delegation. If it has concerns or fears that it has not had certainty that its needs will be met then the committee needs to reflect on that, and we will. We must focus on delivering the funding and the business plan as soon as possible.
The list of questions I had prepared was whether all necessary preparations were in place to ensure the business plan is considered and factored into next year's health budget. All the indications we have are at least positive. How is it proposed to deal with the backlog of cases - for example, those who have had a single implant - in addition to the children presenting who will be seeking an implant in both ears simultaneously? Have the consultants in Beaumont Hospital indicated a sense of how the programme will work? Are the human resources adequate to cater for the backlog, which I understand will take up to 18 months to deal with? Given the numbers involved, is that a reasonable timeframe or will it go beyond that?
Have the witnesses any concerns about the resources that will be provided to deal with the backlog in a reasonable period? Can we be certain there is a commitment to cater for all those needing this treatment in Beaumont Hospital and that the children will not be sent to the three centres in England, with all the attendant difficulties? Are the parents happy that the proposed programme will meet their children's needs?
I too welcome the witnesses. I echo Deputy Ó Caoláin's comment that the witnesses are preaching to the converted. I am not breaking any confidence by saying that in private session everybody has been very supportive of the Happy New Ear campaign.
Like Deputy Ó Caoláin, I wonder how the business case made by the group has been received. Do they believe the backlog will be dealt with? When we last met, there was talk of grouping of children. Group 1 comprised about 65 children aged five years. I am trying to imagine how long a child must wait for the implant.
A mailing to members outlined the case of a girl who had an implant which failed and then had to undergo surgery to remove the failed implant and have it replaced with a new one. This mother spoke of her daughter being traumatised and not allowing her out of sight. That left her in silence for at best five weeks. We know that one can only switch on the implant four weeks after surgery. We also know that a child must readapt to all the sounds, as the electrodes will not hit the exact same point. What a person may know as the sound of a bouncing ball behind him or her is now a sound that he or she must relearn. I had not realised that. I am very conscious that of the children with a single implant, a failed implant or none, many are living in silence. I would like to hear a more detailed response on this issue. I am getting more sceptical and I wonder if there is a clear plan to deal with the backlog and ensure the children will get the implants they need.
I welcome the witnesses. I have a number of brief questions, as most of my questions have already been asked by other members.
Mr. Shay Kearns mentioned the introduction of the newborn screening test for hearing. That is a great step forward, but we need to be able to say with confidence to the parents who have children with identified hearing difficulties that there is a clear pathway for treatment and that the children will receive treatment by a specified date. It is important that this be put in place. My next question - I know it was addressed during the presentation in the AV room - is the ongoing debate on the bilateral approach and the potential impact of the use of stem cell research and reactivating the nerve at some future date. My view is that we must deal with the here and now and do something for the children whose chances of recovery are decreasing every day. We need to act quickly.
I welcome the delegates and thank Shay Kearns for his presentation. As others have said, there is cross-party support for the case they are making. It is important that the budget funding for next year is allocated. I too would like to hear their response to the continuing problem of bilateral treatment.
Could they outline the failure rate of the implants? Is it the case that implants do not work for some children? If that is the case, is there another method or process for these children?
I thank the witnesses for appearing before the committee. It is very important that children are given the opportunity to reach their full potential. Since the national cochlear implant programme commenced 17 years ago, more than 700 patients have had the operation, with an average of 90 operations each year, comprising 42 children and 48 adults being operated on each year. Previously there was a problem in that the Minister would not meet us, but Deputy James Reilly, the Minister for Health, gave a commitment at the previous meeting a few months ago to meet with the members, and I am delighted that he honoured it. He has given a full commitment to look after this problem. Finance is an issue, and I hope the witnesses had a fruitful meeting and that things went well for the Happy New Ear campaign. Let me assure the witnesses that this cross-party committee is here to help them.
I thank the Happy New Ear campaign group for appearing before the committee. Blessed is Mr. Shay Kearns among women. The implant is the most amazing piece of technology and provides the gift of sound. For those of us who have the gifts of hearing and speech, it is very hard to imagine what it would be like to live without them. Did I pick up the figure correctly that 250 children or perhaps more had hearing difficulties?
Some 350 children qualify for treatment but the expected uptake is between 200 and 240.
What budget would be required for this level of treatment? What age group would undergo surgery? If there is a cohort of young people already in the system, how are they being dealt with? I was not at the previous presentation but I would be very interested to learn what the Minister had to say to the delegates.
We do not normally reconvene a meeting to meet groups on an ad hoc basis, but I am glad we did so because Mr. Kearns made a very interesting presentation.
There are two other speakers offering but I will call Mr. Kearns as I understand that Deputy Ó Caoláin must leave shortly.
Today's meeting with the Minister went well. He is a very busy man and we appreciate getting time with him. His response was not negative and the business case has been presented to him. He said he wanted to make it happen, but no commitment was given to say it would happen. Of course, he must review the business case.
What will it cost?
We do not know, and to be honest, that is not our concern. Our concern is what the best care is for our children. We are also concerned for any recipient of a cochlear implant in Ireland, because that is linked to what we are discussing here.
Deputy Ó Caoláin asked about the business case and the different options. I do not know the full details as we have not seen the business case. However, I know many different avenues were discussed and we were asked for our input. We pointed out that time is of the essence. The consultants in Beaumont Hospital have committed to do any amount of surgeries per week to clear the backlog. They want to clear the backlog and they feel uncomfortable that best medical practice, as outlined in the medical guidelines, is not being carried out. There are various options, such as travel and time. The issue of time is significant, particularly for children. Within our campaign group, which is five or six years old now, a number of children are approaching the age where they need to get the implant as soon as possible.
Deputy Naughten asked a question about stem cells. A question every parent asks is whether this is the best option. This decision must be based on the information to hand. Stem cell technology may never get to a point at which it can be offered widely to patients. Therefore, at the moment, a cochlear implant is the best solution for hearing loss for anybody. If it is not done within a certain window or timeframe, that opportunity is lost.
What is that timeframe? Does it depend on each child?
It is difficult to say. It depends on each case, but it has been proven that if the hearing nerve is not stimulated within six to seven years - a report issued in the UK this year says four to five years - there is significant loss in benefit of a cochlear implant. This can range from being able to hear clearly what I am saying now to just hearing a mumbling sound, but not understanding it. The person is aware there is a sound, but has no understanding of what the sound is.
I would like to make a point regarding stem cells. We are between seven and ten years behind on cochlear implants, so I cannot see stem cell research having an impact. It is only research currently, but if it produces results and comes into play, I do not see Ireland being the first to take it up. I believe our children will be well into their 50s before the research produces results that can be taken up. Therefore, I do not see stem cell research as relevant to our children. In years to come, if it is the best option and has been fully researched and proven, that is a route deaf children could take. At the moment, and for the foreseeable future, cochlear implants are the best option available to our children.
With regard to stem cell research, we have been told that it will be at least 20 to 30 years before they will be able to test it on humans. As Mr. Kearns mentioned, the auditory hair cells in our kids' ears are damaged. The research is only being carried out on mice currently and while researchers can grow the hair cells, they cannot stop the growth in them. Therefore, it is a long way away from even being tested on humans. We must decide that our children need to hear through both ears now, not in 30 or 40 years.
Are the witnesses satisfied that this is not just a medical argument to persuade people to go for the bilateral implant?
It is proven best practice and the research has been done. As recently as April this year, a UK study underlined the benefit of a bilateral programme. The issue that this is a piece of technology that can break down was raised. Perhaps Ms Cairns will say a few words on that.
My son Billy had a fault in his implant, when it short-circuited just after the implant was fitted. He was left as he was for two years and made no progress and they decided to remove it. I found the hardest decision I had to make was to agree to change the implant, but it was not. His surgery went well and was so much easier than the first time. However, Billy then had to wait from four to five weeks for the swelling to reduce before his implant could be switched on. That was the hardest part. I had to telephone Beaumont after two and a half weeks to plead for it to be switched back on. He went from being a happy child who played with his toys to one who signed to me they were broken and became aggressive. I put him back into preschool, thinking that would improve his behaviour, but the staff were crying and telling me he was a different child and was lashing out at others.
When our children had their first implant, they were profoundly deaf and knew no different. The process was harder on the parents. However, Billy had been profoundly deaf, then had an implant and had hearing, and then his implant was removed. I could not explain that to him. If he was a normal child, I could tell him he could have it back, but it was impossible to explain to him that he had to wait three more weeks. That was the hardest thing for me. If he had had his second ear done, he would not have had to return to silence for that time. We do not realise how much these children rely on their implant until it is taken away. I would not like anybody else to go through what we did.
I asked about the period of time required to deal with the backlog, being mindful at the same time that new cases are presenting. Is the 18 months mentioned too ambitious?
We do not know until the option is selected. At a guess, it could range from two to five years.
Are the options based on cost?
Ultimately, the options chosen will be based on cost. One of the options is to travel to the UK. If it comes down to time - for example, if my child is five and I am told it will be five years before he gets his implant - there is no question that I will travel in order to get it sooner. However, this is not ideal. All of us here would say we would prefer to have it done in Ireland. Having one ear treated in Ireland and another treated in another jurisdiction raises issues. Tuning is one of the major issues, particularly if one implant centre is responsible for one implant and another responsible for the second. There is also an issue with parents having to travel to both centres, particularly considering the number of days they need to do so. That is an enormous task but it has been done. Parents have done this privately but it is not ideal.
Three or more solutions were put forward in the business plan. The costs of all of these will be examined and based on the pros and cons, one of the business plans will be selected, one that will suit both the hospital and the HSE funding-wise. We must take into account that if they provide options for us to travel and if this would make it easier for the backlog to be cleared so that the simultaneous programme can be started and got working properly, we are all willing to make the sacrifice and travel, but obviously that is not the best option for us.
The good news is that if a simultaneous programme is rolled out in 2014, what will be offered to us will be a once-off solution. This is a once-off problem. We have a group of 350 whose issues need to be addressed, and the sooner the better. The issue will have been addressed then and will not arise again if the simultaneous programme is up and running correctly.
Every week, more children are being added to the backlog.
How many new cases arise each year?
There are about 90 operations each year, between adults and children.
Deputy Ó Caoláin has to leave us now.
I am happy with the responses to my questions and reaffirm our shared commitment on this. It is not just one view represented here and as an Opposition voice, I am happy to confirm that. When our witnesses get to have smiles on their faces on behalf of their children, we will reflect that for them. Good luck and well done.
Deputy Robert Troy also asked for this group to be brought to the committee, but he is unable to be here and has sent his apologies.
Deputy Troy asked me to come here and represent him. He was involved with the group and worked with the committee on getting them here and is sorry he was unable to be here. I am very impressed with the clear and excellent submission made.
There is no point in reiterating what has been said already. The witnesses have explained the case very well. I commend them as parents. Their children are very fortunate in having such caring parents who go to so much work, and I hope their campaign will be successful. I know the effect of a child not hearing properly. It is happening quite a lot, and although some would not have the same demands, any difficulty at all puts the child back in a classroom situation. What the witnesses are doing is wonderful work and I would support the committee in anything it can do.
I welcome the witnesses here today and thank them for their presentations. Everyone here is very supportive of their cause. Given that our nearest neighbours all tend to use bilateral cochlear implants, the question of best practice surely arises in terms of how medical equipment is procured and what medical equipment is provided. How does the HSE ensure it is in line with international best practice? Has any calculation been made on the long-term cost to the State of assisting people with impaired hearing in terms of additional services, supports and assistance - resources that might be avoided were bilateral cochlear implants provided at a young age?
I am very sorry that I could not get here earlier. We had another health related debate in the Seanad until a few moments ago.
I have a couple of technical questions. What is the life expectancy of an implant when it is put in a child? Does it have to be replaced? What is the longest follow-up data we have on them?
They are only around about 30 years or so, but it is expected that an implant will be replaced at least once in the person's lifetime. It is a mechanical device, just like an iPod or whatever, and so these things break down eventually. There is no mechanical device in the home that will not break down.
It is quite a long life-span. If I recall correctly, it is about 30 to 35 years. Therefore the estimate of once in a lifetime is accurate.
We have not got to the stage in Ireland where anyone has had to have them replaced.
I have a developed a little bit of nerve deafness myself over the last decade and have permanent tinnitus for the last 12 years, so it is an area of personal interest to me as well. Perhaps this is on the fringe, but I think I can recall some kind of opposition to the idea of cochlear implants, and not one that I would have bought into at the time. It was more like a quasi-political opposition by folks in the hearing-impaired community. I thought at the time that it was a very unwise line to be following. Has that been sorted out?
One of the things which reduces waiting lists in the HSE and in many other health services is private insurance for many patients. Do private insurers cover implants?
In Ireland it can only be done through the public system. A person cannot pay to get the operation done in Ireland, unless he or she goes to England. That is not an option.
If a patient goes to England, he or she will have one ear as an Irish ear and one ear as an English ear. Cochlear implants are so technical. Patients have to go in for tuning sessions. They change the programmes on them constantly. The patient will hear one type of sound from one ear and cannot balance the implants the way he or she could if both were done in the same way.
We have had examples recently of private health insurance companies departing from their responsibilities and not covering things they should cover, while covering silly things like homeopathy.
In the Senator's opinion, homeopathy is silly.
No. Homeopathy is garbage. In other countries with more of an emphasis on an insurance-based system, do they tend to cover it? Most Americans have private health insurance-----
American insurance companies cover it.
If we had complete open access to unlimited resources to do all the implants we need to do, how many would be done annually? How long is the waiting list now?
They do about 90 per year in Ireland.
What do the witnesses think is the need?
I think they are addressing the need right now. The backlog is made up solely of sequential implantation cases, so that is people who have already received an implant. The usual cycle from the point of identification of hearing loss to the point of implant is about one year. During that year there is a long assessment process. An implant is a once-off procedure and an irreversible surgery. The consultants have to be 100% sure that the child's hearing loss is permanent, is severe to profound, and that the child will not gain enough benefits from hearing aids to give them the ability to speak. The assessment takes nine months.
It takes nine months from the first time the child goes to Beaumont Hospital until he or she gets the operation.
They do not like to do surgery before the child's first birthday.
Is the budget currently for the single procedures?
Yes.
That was my question. Why can two implants not be done at the same time? What age would a child be when the implant is put in?
The hope is that eventually they will be done at the same time. That would be the best option available. It is just that we want our children to have the second implant put in, as they already have the first implant. In answer to Deputy McLellan's question on costs, I think this will eventually save the State money.
That is the point I was making.
If a child is given these implants, money will be saved on speech and language therapy, FM systems at school and so on. It will put them into the workforce eventually and they will pay taxes and give money to the State. There is a high rate of depression among deaf children and deaf adults because they are socially excluded. Our children could be socially excluded if they cannot speak to people in a work environment, and we do not want that to arise. This will save the State a lot of money eventually.
Arising from today's meeting with the Minister, is there a follow-up meeting organised? Is there a timetable in which the Department can get back to you?
We have not scheduled a follow-up meeting, but we know that the Estimates process has been brought forward this year as the budget is in October.
The budget will be delivered on 15 October and we had our Estimates here last week.
That is the key date for us. We would have loved a commitment today, but I am sure there are many like us.
At the moment, the business plan has been submitted and we are just waiting on Laverne McGuinness in the HSE. She is the person who decides. Hopefully in October we will hear if the money has been provided.
I think a message should be sent to the Minister expressing our collective opinion on this, urging him to make the right decision in the budget.
Is that agreed? Agreed. We might also copy Ms Laverne McGuinness of the HSE in that message.
We should also urge the Minister to expedite the backlog. We have heard that it could take anything between two to five years, and we would like to keep it less than two years.
Yes.
We need agreement sooner rather than later. The longer it takes, the bigger the backlog will be.
The current budget is about €4 million and I think the witnesses were looking for €5 million to clear the backlog.
We are not looking for money. We are looking for the right care to be provided by the State. Money is irrelevant for us. It is not a number. It is a standard of care that needs to be addressed. I understand that there are financial constraints, especially in the current climate, but if we review the business case, I do not think the number is outlandish. It is a very achievable goal. We should not be committed to a certain number. It is all about the care.
I have one more question.
How safe is it to get two ears done together? I had the laser job done on my eyes 15 years ago and I was afraid to get the two done together so I had one done on one Friday and the other the following Friday, in case something went wrong. What is the success rate for getting both ears done together?
They are not working.
Is there any chance that one could damage something else by putting them in?
Their ears are profoundly deaf. They will never work again. That is the only reason they receive cochlear implants. They cannot break them any more than they are broken.
In other words, time is very important.
Yes.
What Ms O'Connor said a few minutes ago about the long-term effects for speech and language, education and people being made to feel a part of their workplace, is a seller on this. She could not have explained it any better.
We have a proposal agreed by the committee that we will do that. As Deputy Ó Caoláin said, as a committee we do not normally meet delegations but in this case, given the exceptional situation and the importance of the matter we are discussing, we decided to hold this special meeting on the issue, which happened to coincide with the delegation's meeting with the Minister. We hope it will bear fruit for its campaign. It has our support and the committee will advocate for it on a cross-party basis with the Minister, the Department and the HSE.
