How to get bilateral cochlear implants for a child (it’s not easy)
This is likely going to fall under the category of “not very interesting to lots of poeple”, but it also falls into “health economics”, and that’s something which in one way or another will affect a lot of us, at some time. (Say, when you’re old and need a care bed..)
Through this blog I’ve come into contact with two fathers of deaf or deafened children (here’s one; the other’s not blogging it) who have had a single cochlear implant. But they’re interested in the possibilities of doubling it - because, some studies suggest, if you have two CIs, you’re better at localising the source of a sound, and distinguishing a sound amidst noise. (The folk at Addenbrookes tell me it’s mixed. But anyway.)
The fathers want to find the answer to the question: how do you persuade your Primary Care Trust (PCT) to OK the extra spending - about £68,000 once you include the cost of the implant and the surgery - involved in a second CI?
I’ve thought about this quite a lot. Here’s one argument you could try: if someone came into Accident & Emergency with two broken legs needing surgery, would you stop at mending one? Would you say “Sorry, it’s too expensive to mend both”?
That’s an OK argument - except it strays into the “mending things” line of argument. Deaf children aren’t broken. No, they’re not; they’re deaf. CIs give them “access to sound” (to use the charming phrase) but don’t stop them being deaf. Take off the CI to play on a slide or have a bath, and you don’t get any access to sound.
So here’s the long and short of it. Deaf children do get care - lots of care from all sorts of people: social workers, teaching assistants, disability living allowance, and so on.
Care is expensive. It costs.
So here’s the argument. You can justify a second CI if you can show the PCT that the cost of putting in the CI - and its associated care - is less than the cost of care for a child with a single CI through its life.
The second part should be fairly well known. Proving the first part is the hard one. There aren’t many studies on bilateral CIs around. But that is how you do it.
So - over to you, guys.
- These posts might be related (the database thinks..):
- Two ears better than one, especially for cochlear implant makers (25 September 2006; score: 118.5%)
- I might watch through my fingers: cochlear implants live on the Net! (6 July 2007; score: 111.51%)
- My own call for papers - on cochlear implants (8 May 2006; score: 93.47%)
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July 24th, 2006 at 9:19 am
I’m one of those Dads and have an appeal date fixed for 1st August when I get the opportunity to make the case to the PCT face-to-face. We also have the added twist of Tom’s post-meningitic state which is increasingly being recognised as the exception when bilaterals are funded. Here are my thoughts on the issue. The world of cost-utility analyses is a murky place full of vague accounting and ’statistics’ you can make say anything.
Perhaps the more telling argument is - “You gave us two hearing aids when he was diagnosed as bilaterally deaf - why not two implants?”
July 25th, 2006 at 6:36 pm
There is more to this than cost-utility analyses but I sympathise and empathise with your feelings.
The University of York and the University of Nottingham both have excellent Health Economics departments with very strong links to NICE. Perhaps browsing some of their materials would give you a greater armoury on your appeal date? Or at least a better understanding of their jargon?
Good luck.
August 6th, 2006 at 12:05 am
Hi Charles,
Did you see this article?
http://www.timesonline.co.uk/article/0,,2-2295387,00.html
The Times August 02, 2006
Deaf toddler’s parents win NHS battle
By Nigel Hawkes
Hospital trust refused to pay for boy to have implants in both ears,
then relented after pressure
THE parents of a toddler who has become deaf in both ears were told by
NHS bosses that he could have the hearing restored in one ear, but not
in both.
However, after The Times asked North Dorset Primary Care Trust (PCT)
to justify the decision, it relented and agreed to operate on both
ears. The trust denied that the call from The Times had any influence
on the decision, which it says it had been considering carefully for
some time.
Kirsten and James Harvey, from Stalbridge, Dorset, were relieved that
they would not have to spend £8,000 of their own money so that
Matthew, who is 2, could hear in both ears. The trust had argued that
one cochlear implant would meet Matthew’s clinical needs, but that two
was a matter of parental choice, for which it was not prepared to pay.
“The benefits of having both implants done together are immense,” Mrs
Harvey said. “They do this in other countries in Europe, but not
universally in the UK.
“Matthew’s whole development depends on him being able to hear and we
think the money should have been available in the first place.”
Yesterday she said that she was delighted by the latest decision, and
said that it should be an example to other trusts around the country,
many of which are unwilling to pay for both implants.
Julie Brinton, head of the South of England Cochlear Implant Centre at
Southampton University, where Matthew will have his operation, said:
“Cochlear implants are a wonderful, amazing technology. They transform
people’s lives. They’re unbelievably important. And having two, rather
than one, is an advantage.
“They can hear where sound is coming from better, which can be
important in things like crossing the road. And they can distinguish
voices better against background noise.
“Adults who have had two implants say that it’s like being back in a
three-dimensional world. If a child were simply hard of hearing, you
wouldn’t dream of just fitting one hearing aid. You would fit two.
“We would very much like to give Matthew two implants — it’s the right
way to go. But we understand the PCT’s position. They have difficult
decisions to make and they argue that if the money is spent giving one
child two implants, another may not get an implant at all.”
The procedure is expensive — £36,750 for one implant, of which £15,500
goes on the hardware, and the rest on the operation and diagnostic and
follow-up care.
If a second implant is fitted at the same time, the extra cost is
about £8,000. But if it is fitted later, during a second operation,
the cost is much higher.
Ms Brinton said that research in Britain had shown that adults with
two implants were better able to locate the source of sounds, and had
improved sound perception. The data on children came mainly from
research conducted in the United States. This indicated that children
given two implants before the age of 3 achieved normal language
levels, whereas in the past they would have had to use sign language
to communicate.
August 13th, 2006 at 10:21 pm
[A comment lost because I’ve been away in the past few days: author - John]
>>
cochlear implants destroy deaf children’s lives
deaf children had no choice in this matter
parents did selfish thing to destroy children by giving cochelar implants
breaching human rights.
>>
August 13th, 2006 at 10:24 pm
My response: it is really hard. But CIs don’t destroy lives. On holiday, we met - completely by accident - a girl aged 10 who had a CI aged 2; she can speak and take part in activities with children her age without any problem.
The real breach of human rights would be to deny the opportunity to get access to sound and spoken language. A CI is removable if it truly is intolerable. It would be interesting to see how many people choose to have CIs removed once they reach adulthood. I think there were fears about children rejecting them when the idea was new in the 1990s. Now that’s gone.
And you can still use sign with a CI, just as hearing people can use sign.
August 22nd, 2006 at 5:44 pm
Benefits of bi-lateral are much more than just the obvious cost benefit, or the sound-booth measurable difference. As I’ve investigated whether to get a bilateral for my 6-year-old son, I’ve spoken to many, many adults and parents of children with bilaterals.
Here’s what I’m being told, over and over: Science (sound-booth tests) says it’s a 10-20% benefit. However, science can’t measure how much less exhausted I (or the child) am at the end of the day - how much more I (or the child) feel willing to participate in groups, how much more conversation I’m getting. All of this eventually translates into costs, later in life.
If I ask the scientists, they say the benefits (measurable) are
* Improved distance hearing
* Improved incidental hearing
* Improved localization of sound
* Improved performance in sound-to-noise settings
Ask the recipients themselves, or their parents, they add:
* Improved enjoyment of music
* Improved hearing in group settings (isn’t life one big group setting - especially childhood?)
* Exhaustion factor, read above
Some studies show that uni-laterally deaf children are ____ 10 times _____ more likely to fail a grade in school. Uni-lateral implant recipients seem to me to fit into this category.
By the way, my son gets his second implant on Sept 8 (in the US. follow his blog at: http://www.achancetohear.com)
Good luck, and best wishes.
August 24th, 2006 at 1:14 pm
Parents … do not destroy deaf children lives … Charles says it would be interesting how many adults will remove their implaints when they become adults … what about their childhood destroyed by having no choice but obey or making parent happy ….
hearing people need cochlear implants to wake up … not deaf children.
deaf children do have human rights, to make their own choice … they can learn sign language to communicate … parents are too lazy to learn sign language so force children to have implants. I disagree with your comments how to get implants - train your children properly by learning sign language and dont waste your time!
August 24th, 2006 at 1:16 pm
deaf children do have human rights, to make their own choice … they can learn sign language to communicate
August 27th, 2006 at 9:14 am
I have seen the actual statistics somewhere (which I had a reference) and the number of people who removed their CI when reaching adulthood, or just stopping using it, was less than 1%. So, we’re saying, that more than 99% of children approved of their parents’ decision to implant them with CI’s.
We have to be realistic - a 2 year old make his own decision? My three year old can’t decide whether to eat her Yoghurt or to play with her pet rabbit, let alone something like a CI.
As to parents being too lazy to learn sign - just because a child has had an implant, it does not mean that she or he does not need extensive rehabilitation and that in itself consumes time. Apart from that, it also costs money. I personally know of a mother of 2 implantees who does not work so she can rehabilitate her 2 children, notwithstanding the financial pressures caused upon them. So, I would put it the other way around, that parents of implanted children are ready to involve themselves and commit themselves to what is, frankly, a tough journey.
October 6th, 2006 at 9:12 pm
I run a free advocacy program for hearing impaired individuals who have been turned down by their insurers for treatment. Over 60 % of our cases are for bilateral cochlear implants, another 12 % are for any CI when the insurance contains a blanket exclusion. Getting insurers to pay for it is a battle, but it is a very winnable battle, please visit our web site for more information including information about US implant center bilateral implantation statistics and references to scientfically published articles that support bilateral implantation
October 16th, 2006 at 4:47 pm
I am the mother of a child that was born deaf (connexion 26 mutation) and his father and I chose a CI and an oral program for him. I can tell you that it is a lot more work than learning sign language. In the past our state always sent children off to the school for the deaf at the state capital — over 2 1/2 hours from our home. It would have been easier for us to do this but he would have never been a part of our family. In fact we had to fight tooth and nail for his right to hear using a CI and to obtain appropriate education resources and trained staff. Instead we made the decision to go oral with a CI and our child does not act “tortured”. He loves his implant and in fact gets very upset when his “ear” doesn’t work (cord messed up or battery dies). He is 3 1/2 now and will be getting his second one soon. The thing about CIs and the brain is that the children cannot make the decision later as adults and expect the same results. The brain starts to reassign neurons after age 2 - 3 1/2 so the same results cannot be expected. As parents we made the best decision for our child that we could. The CI still leaves him the ability to turn it off later if he feels “tortured” but if we had waited till even 10 years old — our child could not make the decision to “turn on” neurons that had been reassigned to other senses/functions.
August 11th, 2007 at 2:07 pm
My daughter was implanted 7 years ago and loves her implant. Yes the journey was tough, but I would do it again… she would do it again and she does. She desperately wants a second implant, says/signs so herself. She knows what she wants, always has done. One problem, the hospital won’t let her have one. They recon that she won’t gain anything now … to late they say. For crying out loud, she is only 9. I know myself the difficulties that I had and still have with hearing in one ear. Always asking for folk to repeat, never quite hearing everything. Now I have physical problems in that my neck locks up constantly as I have my head at a strange angle to hear in meetings. I’m constantly in and out of physio sorting out my neck, and why is that… cos I hear out of one hear. Unbalanced hearing. I won’t give up hope that I can give my daughter what she wants which is the second implant, I will keep fighting with the hospital/PCT, but I can’t afford to raise the cash to go privately and risk the whole families security to do so.
August 24th, 2007 at 1:48 pm
i have a six year old daughter with one CI, she is doing so well and doesnt want a second CI but as a parent i’m thinking about it. If she’s doing well at school and home and is fairly happy why put them through it again??
confused parent……
September 8th, 2007 at 2:10 am
I have a 7 yr old daughter doctor suggested cochelar implant but her MRI & CT SCAN do not show problem in cochlea. is it necessary to go for cochelar implant ? Any email ID where I an email her MRI and CT Scan report and get guidance on what yo do ?
September 29th, 2007 at 11:32 pm
I didn’t realize my six year old with 1 CI would need 3 - 4 times the attention that my hearing 7 year old did when she was in yr 1. I had enrolled on courses and volunteered for two different fields of work as i thought she is happy full time at school now, how wrong could I be!….. but wait…. if i have to spend literally the whole evening trying to teach her 3 - 4 letter spellings and other literacy and numeracy, EVERY day of the week, then what are the teacher of the deaf and speech therapist doing at her school? Being a single parent makes it worse! I have given up my courses and chances of being trained professionally and have committed wholely to her. we’ve always used sign language and now, have to try and wean her off it, boy this is tough!
On the other hand, she’s working just as hard to learn, bless her. You feel like wearing every new word they start saying, like a trophy, as well as feeling happy for them of course.
Any six to seven yr old CI children in the ‘’Kumon'’ English programme?? successful or plain waste of time and money?
Would appreciate advice regarding this area.
April 25th, 2010 at 4:10 pm
matthew is doing extremely well now.(he’s my nephew)