Deputys, Senators, Ministers
My name is Shay Kearns, I’m here together with parents of children with cochlear implants, to discuss the topic of bilateral cochlear implantation in Ireland,and in particular children who are born with hearing loss.
A cochlear implant is an amazing piece of technology that provides the gift of sound back to people born with damage to the hearing cells within the ear. Quite simply it replaces the damaged hairs within the ear and transmits sounds into brain waves enabling a child / adult to regain their hearing.
Irelands Implant Programme is linked to a group of cochlear implant centres between Ireland, Northern Ireland and the UK. There are approx. 28 centres in total.
This group of implant centres are led by the “National Institute for Clinical Excellence” (NICE) guidelines. The NICE medical guidelines recommended in a report back in 2009 that supported the provision of bilateral implantation as a minimum standard.
As of today, Irelands cochlear implant centre is the only centre (out of that 28) that has not been enabled to provide bilateral implantation to the children and adults in this state even though it is medically proven to be best practice.
The standard practice of bilateral implantation stretches beyond Ireland and the British boundary - This is not an exhaustive list but to give you an idea on the approach taken by other countries. The following countries provide bilateral implantations as standard practice;
UK, Norway, Denmark, France, Germany, Sweden, Switzerland, Holland, Germany, Belgium, Spain, Iceland, Australia, USand as near as Belfast in Northern Ireland.
As part of the NICE guideline recommendation in 2009, it requested a review of the bilateral programme in 2012. This was completed, and the results presented recently in April 2013 are overwhelming in favour of bilateral implantation given the benefits to the recipient.
This is most evidentin the areas of sound localisation; speech perception and general higher related quality of life. Consider a child in a classroom and moving on as an adult to a working environment struggling to localize or perceive sounds.
This issue is about more than simple hearing, it is about providing these children with the greatest opportunity to reach their potential integrate into mainstream society and be a positive contributor to this state.
The April results also highlighted the urgency with which a second implant should be provided, with children gaining the greatest benefit if received within the first 4-5 years, with the opposing impact of lost benefit the longer the delay with each passing year.
In Lehmans terms, this simply means the difference between hearing a clear voice or being unable to hear at all.
It is in the area of sequential implantation where time is of the essence, the longer this is left the worse it gets for both the child and the medical professionals as waiting ques get longer and the demand for SNA’s gets higher.
Time is not on our side
The lead consultants for Ireland have requested the support to roll out a bilateral programme on many occasions over the past number of years but to no avail.
Due to the longer waiting lists and the increased numbers of families involved, parents voiced their concern and support and I’m happy to say, the Consultants and Senior members of the HSE have engaged positively with parents to discuss and work towards a solution to this area.
This significant part of this – All parties agree this issue needs to be resolved ASAP
Following on from tose meetings, the HSE brought over two specialists in the area of bilateral programmes last May, Prof Gerry O’Donoghue and Julie Brinton who assisted in the roll out of the UK and French bilateral programmes. Both are highly qualified in this area and have ratified what was known, that Irelands Cochlear Implant is not meeting International standards.
Following on from that review, Prof Gary Norman (Clinical Lead Audiology) has compiled and submitted a business case outlining how and what needs to be implemented.
We need you, as members of the health committee to help support this business case with funding for an urgent roll out of a bilateral programme and to address the backlog of current implant recipients, with particular focus on young children.
Current staffing levels in Irelands Implant centre are at a fifth when compared to an implant centre in the UK covering a similar headcount, and equipment is being funded for by parents by way of private fundraising. They are just about managing to operate to provide adequate single implant care to the Republic of Ireland.
The HSE recently rolled out the hugely successful new-born hearing test screening which will help identify children with hearing loss at the earliest possible stage.
This is an excellent step forward however its benefits are lost if we do not provide the adequate care once we have identified these deaf children. We will only see larger backlogs of children needing the correct care treatment and piling more pressure on an Implant Programme that is already at its peak.
This does not make any sense and is simply not acceptable.
The solution is a very simple one, they need the appropriate budget to provide an acceptable minimum standard of care to the deaf children of Ireland. As supported by Gerry O’Donoghue’s review, this will include improved facilities, equipment and staffing (speech and language therapy is key to the success of an implant) in order to cope with the demand of a bilateral implant programme. Let us make that commitment and let the specialists do what they do best.
90% of deaf children are born to hearing parents. That child will be the first deaf person they have met and you can be sure those parents will also raise this issue and continue to fight for the right care for these children until it is addressed.
The same situation can happen anyone in this room.
These are normal kids with a sensory loss that can be treated, they have every right to be heard as they do to hear.It is simply the right thing to do!
In conclusion,
- Ireland is lagging way behind not just Europe but the rest of the world in its approach to Cochlear Implantation as highlighted by recent expert reviews.
- This is an area that can make a real positive difference to the members of this state (this is simple fact proven in many other countries)
- A business case has been submitted by the HSE, this needs to be supported by the Dept of Health.
- Time is of the essence, as each day passes the waiting list gets longer and the benefits are lost
- There is a real opportunity to make a change for the good within this country; a small investment now will reap massive dividends in the future.
- Look at what you can do to contribute to making this happen and support this proposal in full
Thank You