Recently I was contacted by a deaf man called Christopher Robertson, who told me about his cochlear implant situation.
Christopher (below) wrote that his current cochlear implant only has around half of the electrodes working, which has led to many problems for him in being able to hear people.
However, he has been told it is not “clinically advisable” to have a replacement implant, with the hospital saying that he still has “measurably good hearing” from the device. Furthermore, he is also not able to have a second implant for his other ear.
Christopher said:
It is very frustrating being like this at the moment as I don’t hear all the sounds. I work full time and have difficulty hearing my colleagues and sometimes I have to ask repeatedly what they are talking about.
Even my wife and I struggle to have conversations as I don’t hear her first time. Like when the TV is on and have a conversation, I used to understand what she said. Now I have to lip-read and ask my wife to repeat what she is saying.
I started to feel down because I don’t talk too much, to save me having to keep asking people to repeat themselves. Instead I keep things to myself. I have noticed I get frustrated easily when not hearing right.
I contacted University Hospitals Birmingham NHS Foundation Trust, and they confirmed that he has not been offered a replacement implant and also that he is not able to have a second implant.
They said: “in cases where patients receive measurably good hearing benefit from an existing cochlear implant, it is not clinically advised to have the device removed (explanted) and replaced.”
Regarding having a second implant for his other ear, they said: “Bilateral (one in each ear) implants are not approved for adults by NICE except for people with additional sensory disabilities e.g. registered blind. Hence it is not possible to get funding approved for cases that are outside NICE Guidelines.”
Christopher does seem to be in a no-man’s land, stuck with an implant that only offers him half of the benefit that it should do.
On a personal level, I know how hard it is to adjust to a new type of hearing aid, or to go from analogue hearing aids to digital.
Hearing via an implant that only offers half the electrodes must be a very difficult adjustment to make, and it’s an understatement to say that his situation is far from ideal. Considering the effect on his life, at work and at home, I really think that he deserves a better service – a fully working cochlear implant – to help him hear the maximum he is able to hear.
In a statement, University Hospitals Birmingham NHS Foundation Trust said:
We are sorry to hear that Mr Robertson is unhappy with the level of hearing benefit he is currently receiving from his cochlear implant. The care and support of our patients remains our priority and we would urge him to discuss his concerns direct with the Hearing Implant team.
All of our patients receive highly specialist treatment dependent on their individual needs, as advised by the clinical decisions of our expert Multi-Disciplinary Team. The Trust is bound by NICE guidelines in the range of treatments it can offer and we work within these guidelines to deliver the best available treatment and devices to ensure maximum benefit to our patients.
I’d be interested in hearing from any other readers who have similar problems. I’m also hoping on Christopher’s behalf that his hospital change their minds on his situation soon.
Charlie is the editor of Limping Chicken, as well as being an award-winning filmmaker. He directed the comedies The Kiss and Four Deaf Yorkshiremen go to Blackpool, and three instalments of the documentary series Found. As a journalist, he has written for the Guardian and BBC Online.
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Katie
October 24, 2016
Have the hospital confirmed that the implant is not working properly? This is shocking, you can’t expect the poor man to go through life with a half working cochlear implant.
Editor
October 24, 2016
It was confirmed, yes – Charlie
mjfahey
October 24, 2016
I didn’t realise the power that the hospital has over a person’s well being, this article has opened my eyes and I hope my CI continues to work well. I am a bit puzzled has to why the electrodes are not working…surely they are checked before implantation. If they are faulty how come the makers have not stepped in to sort this out… a CI is supposed to last up to 20 yrs at least. Is there a medical reason Christopher cannot have a ‘re implantation? If not, it is not fair to leave him in this situation… this should be sorted by either the makers (what brand of CI is this, let’s shame them into sorting it) or the government/NHS who are probably holding the purse strings tightly!
mjfahey
October 24, 2016
Actually is it not possible to actually do just that…. name and shame the people who are refusing to help Christopher. The CI is one of those miraculous things out there in the public eye that give deaf people the ability to hear again…. nothing ever goes wrong, or if it does its kept quiet. Christophers case needs to be publicised and questions need to be asked. It sounds to be more about money than anything else… so the CI should be under warranty.
MW
October 24, 2016
I have no experience with cochlear but with hearing aids. I am currently going into dispute with my local ENT. I feel I am getting a lower level of service where my care needs for a good quality hearing aid are being compromised by cost saving and the silly rule book. I suffer badly using digital hearing aids and since they stopped using analogue ones I am not a happy person still seeking out a hearing aids that does not distress me.
Your article make for sad reading. Not getting all the fact – I am wondering if Christopher had made a formal complaint, approach PALS, put this on Patient Opinion blog to name and shame, Raised this with Care Quality Commission to check if their action was reasonable, Alert CCG under their Quality Alert System (this can be done via GP Practice) . Tell your local Healthwatch. Raise this with your local MP.
It is a sad situation that we no longer have an effective advocacy service but I am not sure what Birmingham has to offer. Could Ear Foundation http://www.earfoundation.org.uk/ help with sign posting – they accommodate children’s but might help? What about http://www.bid.org.uk/advocacy/advocacy Also, http://www.deafplus.org/where-we-are/birmingham/. I am not sure if http://www.pohwer.net/ still operates in your area covering East and West Midland but they are very good.
It feels like I am getting a car with three wheels and told to get on with it. It doesn’t wash and I feel Christopher has been badly served. I feel everything tends to be money- led. The NICE rules aren’t set in stone it is just that certain people of a particular mind-set with attitudes use the rules rather than be proactive in seeking a solution. I know of a deaf person getting two cochlear – he just happens to be in the system to know how to get it. Customer care doesn’t matter in the NHS and vulnerable people do tend to lose out..
I would advise calling up a multi disciplinary team meeting to discuss the situation and you are entitled to ask for that. Don’t be fobbed off but do try and get a representative to be your supporter – don’t do it alone. They do need to be brought to account leaving you were you are in your current situation which has impacted your quality of life.
Do take a look at this document and try and use some of the language they use in the booklet Commissioning Services for people with hearing loss. https://www.england.nhs.uk/wp-content/uploads/2016/07/HLCF.pdf
Oh Dear
October 25, 2016
“I suffer badly using digital hearing aids and since they stopped using analogue ones I am not a happy person still seeking out a hearing aids that does not distress me. ”
I agree with you. Digital aids are terrible compare to my old analogue aids. I got 4 of them and the NHS are refusing to repair them.
Sue
October 24, 2016
Who made the implant? I agree with the previous post, name and shame!
Tim
October 24, 2016
The NHS is being starved of funds because people keep putting a cross next to ‘The Conservative Party’ at General Elections.
A vote for the Conservative Party is a vote for these things to happen to your neighbours.
Sadly, so many people are suckered into hating their neighbours, that they continue to vote top harm others.
Clive
October 24, 2016
Appalling! My CI was faulty and I had it “explanted” and replaced. If Christopher is not getting the full benefits of his CI then something has gone wrong. I would take this further by speaking to the consultant and if necessary go down the NHS Complaints Procedure to get this reviewed. Have a look at this link:- https://www.england.nhs.uk/contact-us/complaint/ . A local NHS Complaints Advocate should be able to help with this. Good luck.
Molly Berry
October 24, 2016
The Nice guidelines are just that, guidelines. I know several people who have two implants on the NHS, one where the power was leaking causing facial twitching, so that many of the electrodes had to be switched off. This left this implant user in a similar place to Christopher, so she was given a second one in the other ear.
I am sure if they were pressed, a second implant could be authorised, if there are no medical reasons he can’t have a second implant.
Linda Richards
October 24, 2016
Some excellent advice there. What bothers me is …. How does a child know if her/his implant is fully working? Especially a very young child -a toddler? How does the child’s parents – especially Deaf parents – know if the implant is fully working? Are they told? Or are they fobbed off? (After all, they’re deaf so what they don’t know…. And all that.).
I’m bothered about the last bit because there are Deaf parents with very young children who are implanted who don’t seem to realise how much ‘auditory training’ and ‘speech training’ they need to do but if they can’t hear or don’t have or use speech, how does it work for them? And what’s the point if the implant isn’t fully working?
Too many failed implants and yes, we should know what make this is and where this took place.
Clive
October 24, 2016
How is this relevant to Christopher’s unfortunate situation?
mjfahey
October 24, 2016
The thing is the auditory team can monitor whether the implant electrodes are working via the computer programmes which map the child’s progress very closely. The team work very closely also with the parents and teachers etc to make sure there are no problems.
As for auditory training… this takes place with any child whether an implantee or hearing aid…and indeed hearing children also have a level of auditory training from birth.
The problem Christopher has is not about the training, it’s about the fact that all parties KNOW the electrodes are faulty but they are not realising how much of a negative impact it is having on his life. To me this is a cost cutting exercise where Christopher loses… it is not right and needs stirring up in the public eye.
DeafLinguist
October 25, 2016
This is not right.
It *is* possible for people to benefit from implants without all the electrodes working (occasionally the odd electrode may not function, the array may not have been fully inserted, or the patient may ask for an electrode or two to be switched off if it is causing overstimulation – it’s usually possible to identify the specific electrode causing the issue), but half not functioning????
I’m almost wondering if the parameters for ‘measurably good hearing’ have been set too narrowly in his case. I understand that speech perception is possible with only 8 functioning electrodes, leading me to wonder if this has been accepted as the threshold for acceptable results. In the quiet of the soundproof booth it may be possible to understand speech, but results in the real world will be very different indeed – and any audiologist worth their salt knows this.
The hospital should involve the specialists of the relevant CI company who will check the functionality of the internal device, and offer their recommendations. If it is faulty then their intervention would probably mean that a replacement is offered at no extra cost to the NHS (who were obviously in that case sold a defective piece of equipment). If the array is unsuitable for his specific cochlea then all the CI companies have alternative arrays that can be used for particular issues in cochleae (e.g. shorter arrays, different spacing).
As a very happy CI recipient I would be devastated if I were in Christopher’s situation and hope that we read a much happier follow-up story. Please keep us posted.
Oh Dear
October 25, 2016
As usual it’s the Tories fault. Grow up.
mjfahey
October 25, 2016
@Oh Dear. Do you read the papers,listen to the news, walk down your local high street and see the number of homeless on our streets… or are you one of those who’s mummy and daddy is supporting you through life.
The NHS cuts are certainly Conservative policy… and this possibly reflects on Christopher’s plight…
Vanessa Rose
October 25, 2016
Have shared the story Chris, really pleased somebody else is helping you with getting this sorted.
You truly deserve the best hearing you can get. Cochlear need to this sorted for you ASAP. X
Cathy
October 26, 2016
I still have digital aids, which are now more or less obsolete, after a recent hearing test showed that I have lozt a considerable amount of hearing in my right ear.
The audiologist said you are now a candidate for a CI, which did not fill me with joy. Iam aware that you cannot have MRI with CIs and that is a big worry as I have recently had one. Secondly, after reading about Christopher’s plight, I feel CIs are nowhere near as good as people make out. And certainly no good when the electrodes fail!
How can the NHS leave someone in this state? What is the point of CIs when they end up as useless as hearing aids?!? And how DARE NICE have the audacity to decide who can hear well and who can’t?!
I think this story has finally made up my mind: I am definitely not having a CI. The risk of being even worse off than with hearing aids is not worth it, whatsoever…..so sorry, Christopher.
Robert Mandara
October 26, 2016
Cathy, I understand your reservations – they are basically the same reasons why it took me almost 20 years to decide to get cochlear implants. I encourage you to do some thorough research before ruling out implants though. For example, you will find that it is possible to have MRI scans with most cochlear implants now, albeit only up to a limited (and reasonably high) strength. In the event that you need to have a stronger MRI scan, the magnets can usually be temporarily removed in a relatively simple surgical procedure. You need to hear every day of your life. Why sacrifice your hearing on the off-chance that you might one day need a high-strength MRI scan.
There is obviously a risk that you will feel that your hearing is worse with an implant than with a hearing aid. But when you reach the point that the hearing aid isn’t helping, you have nothing to lose and everything to gain! If you can meet with cochlear implant recipients face-to-face, you will most likely find that they are hearing better than you are. For my part, I can only say that I wish I’d had my implants 20 years earlier (that is, if today’s technology had been available back then)!
mjfahey
October 26, 2016
Your choice Cathy, that’s one of the things the CI teams insist on.
But if you are not hearing with aids and can do something about it… why not think about it a bit more… nothing ventured nothing gained… and in your case nothing to lose!
Hopefully this article may get Christopher some help and he will get ‘re implanted…which is what he really wants.
Robert Mandara
October 26, 2016
It seems to me that Christopher is enjoying “measurably good hearing” in much the same was as someone could be said to enjoy “measurably good walking” with a half-size crutch.
As has been mentioned, it is quite normal for electrodes to fail or for some of them to be deliberately turned off. However, it isn’t normal or acceptable for 50% to fail. Is it that he can only hear the low or high frequencies, or is every other electrode defective? What isn’t clear at the moment is how badly broken an implant must be before it gets replaced. When Christopher chose to get a cochlear implant (no small decision), he did it in the reasonable expectation that he would get a fully functioning device, not a broken one. He deserves it to be replaced. The primary reason that the implant hasn’t been changed seems to be that Christopher is hearing too well. Do the test again and be sure not to respond to the beeps next time!!!
Christopher could try naming and shaming the manufacturer and/or hospital, via the newspapers. Before that, I would suggest that he tries to talk directly to the manufacturer to sound them out for their view. If they are unhelpful and Christopher eventually manages to get a new implant, he should obviously switch brands at that point.
A drastic alternative would be to move to another region where the service is better, or even to move abroad to get a second implant. I live in Finland and, as a result, I have two cochlear implants rather than just the one that I would qualify for in the UK. Two ears are much better than one.
Please let us all know how this story ends Christopher! Best of luck!
nathan
October 26, 2016
I am not pleased to see that this thread has descended into political bashing of the tories. We should grow up and be above that sort of mud slinging. The NHS has not decreased its spending since the tories came into power and fact increased it with inflation.
What appears here is a case of the hospital sticking to the wording of guidelines too much which is misguided in this particular case and unacceptable.
Can I suggest he goes back to his GP and explain the situation that his implant is not working properly and then hopefully the GP would write a new referral and authorise funding for a new electrode to be implanted.
Good luck
mjfahey
October 26, 2016
Stating facts is not slinging mud Nathan, My CI was due to be upgraded and has been put on hold for FOUR more years! Why? Straight from the horse’s mouth… Government cutbacks!
It’s very likely the same thing with Christopher… so maybe Robert has the right idea… tell lies to the audiologist and say his implant is not working at all!
If this sounds familiar it probably is… many people are told to make it worse than it is when claiming DLA, now PIP i.e. pick your worse day and go from that…
Nathan
October 26, 2016
The NHS always had kept it’s purse strings tight – even when Labour was in power . Nothing new here so no need to resort to political mud slinging because it is an actual fact, that under whatever government the NHS is under , the purse strings are always tight! ! Same applies to dla / pip. I think most cases it’s just a case of hospitals following guidelines too much ..ie if aids are working why change . Also NHS hospitals now have a new funding systems where they get their funding from CCG of which budgets is controlled by the GPs – So whilst the hospital may have funding to maintain patients (fine tuning aids , ear moulds , batteries etc ) keeping to guidelines that aids and CI is working , it is actually the GP who authorises the actual referal ( hence subsequent funding ) for a new CI/ hearing aid .
I suspect in your case (mjfahey) , you are not being offered a new CI because your current one is working perfectly fine and you are still benefiting from it – the NHS is not in a position to freely fund new CIs when your exisiting ones still works perfectly fine . Imagine the NHS freely funding hundreds and thousands of CI for the stake of an ‘upgrade’ when the money could be better used implanting deaf people with broken CI or no CI. Hearing aids are different to CI – they are very very cheap to replace and upgrade every 3 years.
mjfahey
October 27, 2016
Hmm, Ok yes, I’m so happy with my CI that I brushed off the info that I won’t get the upgrade yet… I agree it’s better to spread the money on others getting the same privilege. But your thoughts that the Government is not controlling funding of NHS, DWP spending is totally wrong. The whole country is suffering under this present Government… every single day new statistics are being revealed which show the effects.. Today’s were… Child Homelessness up 58% since Conservative came into power… 70 % more families with children homeless in the same period. Sorry I see this on the streets everyday, I can’t help but comment about it. It makes me very angry.
Sorry go on about it. The main thing here is Christophers plight however it’s caused, needs sorting asap.
nathan
October 27, 2016
I agree there is a lot of political issues such as homelessness etc , but your assumption that the government controls NHS funding is wrong. They provide the funding but it is the CCG – Clinical Commissioning Group are the ones who control the funding. Look it up.
With regards to other political issues – this is not the place to discuss it.