Good news (?)

I've been otherwise engaged, web-wise, over the last week or so updating 2ears2hear - a website that I had a hand in setting up along with another CI dad. The site was set up at the end of last year to raise the profile of the then ongoing appraisal of cochlear implants by NICE (National Institute for Health and Clinical Excellence) here in the UK.

The course of this appraisal has not run smooth and has kept families on tenterhooks, what with their vacillations and oscillations. First there was the excitement of last December when the first appraisal guidance report pointed to bilateral implants for prelingually deafened children, post-meningitic children and children and adults who are blind. It was a big step - but still left hundreds of children and adults out.

Ahead of the second appraisal document's publication in March 2008, someone seemed to get a little anxious about the bill and the prelingually deafened children disappeared from the list. News of the credit crunch had reached the Health Service and belts were being tightened. Lets not worry about the future and think about the bottom line now...

So when the Final Appraisal Determination (where did they get these names from?) was published last week, I must admit to not feeling too optimistic about its contents but...

Well, you take a read.

There's another week to go before final publication and this rollercoaster may have another twist, sheer plunge or two to come but it would seem that, barring appeals from the formal consultees, the proposals are beyond what could ever have been expected.

All children with severe to profound deafness to get bilateral implants along with all blind adults and those with heavy reliance on hearing due to other disabilities... Note - there's no need to make special mention of the post-meningitic; the criteria are so broad. Now that is fabulous news. It brings with it a number of concerns - of which more in later posts - but firstly, on top of that great news, there is this statement:

Sequential bilateral cochlear implantation is not recommended as an option for people with severe to profound deafness. People who had a unilateral implant before publication of this guidance, and who fall into one of the categories described in 1.2, should have the option of an additional contralateral implant only if this is considered to provide sufficient benefit by the responsible clinician after an informed discussion with the individual person and their carers.

Now that sounds like an opportunity for more ambiguity and a continuation of the postcode lottery for a significant number of individuals - those who had the misfortune to get deaf at the wrong time.

The reason is all related to the QALYs and the cost of the second implant. Two ops cost enough more than one to tip the cost-effectiveness balance and, given the approximate nature of the calculations (I'm still no nearer understanding how you actually assign numbers to quality of life with anything approaching certainty), it pushes the cost of simultaneous implantation beyond the acceptable boundary.

Anyway, my fellow CI dad Dominic has put it all far more eloquently on http://www.2ears2hear.org.uk - he's the one behind the words, I just do the grunt work with the website. If you get a chance, there are a few interesting case studies on there too including one that gives a slightly different perspective.

Thank heaven for little boys.

Back in April Tom took part in a study at the University of York. The study, being carried out by Rosie Lovett under the direction of Professor Quentin Summerfield, is assessing the spatial listening skills of children with cochlear implants. Rosie is clever - it says so here. This is a formal take on Rosie's study and here is a short ramble about Tom's small part in it.

Rosie and the Mufessor sent us the results of Tom's assessments and they demonstrate just what a marvellous creation cochlear implants are, how justified we were in pushing for bilaterals and what powers of concentration Tom has developed. This last one is a surprising but not unwelcome byproduct of the long hours of therapy, mapping and assessment Tom has endured over the past couple of years. The study in York took three hours, interspersed with three breaks, and our wee man powered through - engaged and compliant throughout.

In terms of the results - they quantified what we see every day. Tom is performing incredibly well in terms of left-right discrimination and, while nowhere close to normal hearing children, he can discern speech through quite a significant level of noise - the benefits of bilateral implantation that we were so keen on him acquiring.

When Rosie's study is complete, I fully expect it to join this recently published paper (abstract here) in the growing pile of evidence that demonstrates the bleedin' obvious - two ears are significantly (QALY and scientifically speaking) better than one.

At the end of our day out in York back in April, Rosie took a picture of Tom in the hallway outside the 'ring of sound' room - we were in an ajoining room getting our stuff together. We kept hearing Rosie giggling, with Tom joining in as is his wont.

'Tom... could you take your hands out of your trousers for this picture?'...

Rosie sent a lovely 'Junior Investigator' certificate with the report; glossy with a portrait of Tom at its centre. Mercifully, it has been cropped at the waist but, given the angle of the arms, its quite clear where his hands are.

Thank heaven for little boys.

Beyond Boundaries: Across the Andes

If you have access to the BBC don't miss Beyond Boundaries: Across the Andes. The first part aired last Friday evening and is still available via iPlayer - for the next 4 days at least (I don't think you can view this in the US unfortunately). There are three more episodes to come.

The programme follows ten disabled young people as they enjoy/endure a month-long trek across Ecuador. It is some mighty powerful TV - heroic endeavour mixed with very real displays of youthful frustration in circumstances that would test the most able bodied.

There are three deaf people in the group including Jeremy, a cochlear implant user from not so many miles from here. Towards the end of the first episode, the very real difficulties they experienced while working within a team were well portrayed and contrasted powerfully with the more obvious problems being overcome by the amputees and wheelchair bound.

Prime time cochlear implants - who'd have thought.

A bumper news day!

In the interests of preserving some sort of historic record, the last month or so has featured a few highlights worthy of record, in retrospect at least. That is to say, events that do not include 'that slave-driving company that I work for finding even more things for me to do' which may well be Nik's abiding memory of this spring.

Schools and all that

So... there was the Saga of the School Places which gripped Ruddington over the Easter period. The first we heard of it was via an email we received while in France and it darned near spoiled our holiday, let me tell you. We had applied for a place at the local infants school for next January as per instruction and the email informed us that the Local Authority had turned down our application.

I should mention that this is the only infants school in the village. It is the infants school to which the nursery Tom currently attends is attached. It is the infants school that has received funding to carry out improvements to the infants' classroom - in preparation for the arrival of a deaf boy with cochlear implants (yes, that would be Tom). It is the Local Authority that employs Tom's Teacher of the Deaf and had her train the infants school staff in all matters cochlear implant ahead of... well guess...

One has to admire the foresight, planning and communication at work there.

We came home to find a village in uproar. Okay, not quite; Tom was one of 17 children turned down, including Joe-the-boy-next-door, the daughter of 'that couple from ante-natal' and the daughter of the greengrocer. The school was full - its 60 places (class sizes are restricted to 30 by law for the first couple of years of school) taken up by children living closer than us. We tapped in to the 'word on the street' and the ruthless cut-and-thrust of school places was made plain to us. Stories of grandparents' and shop addresses being used on applications surfaced. Ruthless tactics for appeals hearings were shared and honed. Things were starting to look ugly.

Just as the torches were being lit and the posse rounded up however, our righteous indignation was punctured by the news that the school had found room (an extra classroom that it had misplaced or something) and there would be no need for the banners and marches.

So that's all fine then... but one might imagine the number of times phrases such as 'What is WITH these people?' passed our lips. It makes you think that this county just isn't THERE for us at the moment...

On a lighter note

Apropos nothing, Tom suddenly remembered our visit to Sundown last spring. In particular, he remembered a ride on a particularly tame river ride with a few strategically placed water jets.

'Yes! It wet daddy's teeny-tiny hair!' accompanied by thumb and forefinger held very close together.

Over the coming years I suspect that my son will say much less kind things about my rapidly disappearing hair than this.

A Grand Day Out

And bringing you right up to date, today Tom took part in a study being carried out by Rosie Lovett and Professor Quentin Summerfield at the University of York. Given this link, I'm guessing the project is sponsored by Deafness Research UK. The study is one of a number trying to fill the gap in terms of published research regarding the benefits of bilateral implantation.

Rosie's study involved Tom playing numerous listening games in the University's 'ring of sound', testing his ability to detect the direction from which a sound is coming and hearing in noise.

We'll get his official 'results' in the next few weeks but it certainly looked to us like he was performing pretty well.

We'd prepared Tom for his trip to see Rosie and the Professor, telling him about the exciting games they had lined up. He was a little overwhelmed when we got there, turning mute and hiding behind the furniture, and more than a little impressed with 'the Mufessor'.

As he eased himself into the day, Tom's cheekiness returned although he stuck resolutely to this title for Prof. Summerfield even after being invited to call him Quentin. On the first of many trips to the toilet during the day, he declared proudly 'this is where the Mufessor wees!'

Not so NICE

In December and January I drew attention to the publication of the draft recommendations on cochlear implantation from NICE, the body responsible for publishing the guidelines that steer healthcare spending in the UK. The first appraisal consultation document looked promising; bilateral implantation was being recommended for all pre-lingually deafened children as well as the deaf-blind and post-meningitic children. It was all coming too late for Tom, of course, but the future was looking a little brighter for many families.

Looks like we got ahead of ourselves there...

NICE have just published their second appraisal consultation document in which they back-track on this recommendation, explicitly dropping pre-lingually deafened children from the list of those deemed suitable for bilaterals and stating:

Bilateral cochlear implantation is not recommended for children and adults
(...) except in the context of research designed to generate
robust evidence about the benefits to functional hearing and health-related
quality of life of simultaneous or sequential bilateral compared with unilateral
cochlear implantation in those with severe to profound deafness who do not
receive adequate benefit from acoustic hearing aids.

And we were hoping, and campaigning, for a widening of the criteria to include post-lingually deafened children, who would equally benefit from improved hearing in the classroom, and adults. This is the UK's opportunity to catch up with the US and many other countries, display a little bit of common sense and act. What has caused this U-turn?

If you are in any way involved, or interested, please consider responding to NICE through their website. They need telling.

Last man standing

In parallel with all of Tom's successes and developmental achievements over the past 18 months another story has been unfolding. As Tom's every achievement has lifted us further away from the desperation and hopelessness we felt in April 2006, our celebrations have been tempered by the ongoing struggles with the Primary Care Trust (PCT; the local branch of the NHS) around funding. In a partially successful exercise in self-therapy I avoided the subject here - I fought hard to get you regular readers; the last thing you needed was me harping on about how hard done by Tom was when there was obviously so much to be grateful for.

That wasn't the only reason I refrained...

Way back in August 2006 when we first appealed against the PCT's decision not to provide simultaneous bilateral implants a print-out of this blog appeared in the papers distributed for the appeal hearing. I don't think Nottinghamshire PCT's budget stretches to a full-time 'blog-watcher' (jeez, I sincerely hope not - that would be one irony too many) but I didn't want to risk any chances we had of securing some sort of funding result by bad-mouthing the Chief Executive on a daily basis here.

The situation has moved on and my mood of restrained optimism has moved with it so, at the risk of being repetitive, let me give a brief resume of events to date so as to put the latest news into context.

1. Tom contracted pneumococcal meningitis in mid-April 2006. About 24 hours after first displaying symptoms we now know to be the onset of the illness, our local GP sent us home suggesting he had a tummy bug.
2. After Tom's profound hearing loss was diagnosed he was rapidly referred for cochlear implantation. The implant team asked the PCT for simultaneous bilateral implantation. The East Midlands Commissioning Group said no - he could just have one even though the recommended treatment for post-meningitic deafness was bilaterals all the way.
3. Tom had his first implant on 15th June and was activated a month later. We initiated an appeal against the PCT's decision not to fund simulataneous bilaterals. The appeal date was set for 1st August 2006.
4. Our appeal to the PCT is rejected on the same day that the Times report a successful outcome elsewhere in the country. We initiate the complaints process with the Healthcare Commission - the outcome is not expected for 4- 6 months.
5. Also in August, the National Institute for Clinical Excellence (NICE) began their technology appraisal of cochlear implants. The scope included the cost effectiveness of bilateral implantation. They are scheduled to report their recommendations in April 2008. NICE recommendations effectively dictate spending policy across the country. It is in their absence where PCTs are left to their own devices.
   
6. September 2006 and vaccination against pneumococcus - the bacteria that caused Tom's meningitis - is included in the national immunisation programme. It has been drastically reducing cases of meningitis across the western world for some years - not in the UK until this date though.
   
7. Given the risk of ossification, we decide to proceed with a second implant for Tom, opting to pay for it privately. This takes place on 23rd September 2006. Throughout this period we read about, and speak to, numerous families going through the same process. Some are successful, others are not.
   
8. In April 2007, a family in neighbouring Derbyshire were successful in their appeal for bilaterals for their 10 year old post-meningitic son. Because of the similarities to our case, and as our counties share a common policy, I felt it worthy of a mention to both the PCT and the Healthcare Commission who were 7 months into their investigation.
   The PCT informed me that they weren't about to change their decision. The Healthcare Commission were a little more polite and added the information to the pile, thus extending the investigation by another four months.
9. August 2007 and the Healthcare Commission send us a long and rambling letter addressing each of the (many) objections I had made to the PCT's appeal decision a year previously. The upshot was that the PCT had been perfectly at liberty to make the decision they did. The Healthcare Commission doesn't question policies - just that you've followed them correctly.
10. During the summer our focus shifts from Tom's language development - which was (and still is) racing along - to his balance and coordination. It becomes evident that the legacy of the brain damage suffered as a result of the meningitis is greater than we originally thought.
11. The arrival of the bill for the second year of Tom's care for his 'private' implant spurs us into throwing ourselves against the brick wall that is the PCT one more time. We write with the assumption that recompense isn't likely and request that they take over the aftercare of the second implant - an annual cost of around less than £3000 for the next two years and less than £2000 after that. The case is referred to the Individual Case Review Committee, an august body that will only accept submissions from clinicians, who will hear the appeal on the 13th December. We talk to our implant team, community paediatrician and GP (family doctor), all of whom make strong cases on our behalf.
    They cite his additional needs due to the meningitis, a powerful (and terrifying) example of which was published this year, as well as pointing out the unusual stance that Nottinghamshire PCT were taking given national trends.
    Guess what? They turned us down again. It isn't the NHS's responsibility to take over the care of a privately funded procedure. Forget everything else.
    
12. Today, NICE published their Appraisal Consultation document - essentially their draft report.
    They recommend, and I quote:

Simultaneous bilateral cochlear implantation is recommended as an option for the following groups with severe to profound deafness who do not receive adequate benefit from acoustic hearing aids as defined in 1.3.

• prelingual children
• children and adults who are registered as blind
• children and adults who are at risk of ossification of the cochlea (for example after meningitis).

which - if I read it correctly, would give Tom simultaneous bilaterals on two out of the three counts.

I have yet to ask the PCT what they make of it for fear of using up one of my 'lives' (I can ask the Case Review panel to take another look and appeal that if necessary). My pessimistic fear, and I think you might agree that I have grounds for this, is that the PCT will treat this news in isolation, state that it only applies from the date of publication and retrospective 'tidying up' is out of the question. You have to hand it to them. Each decision, without considering the whole case, the context of national trends or research, has been defensible. They haven't broken any rules.

The point I'd like to leave you with is this. I had a chat with the coordinator of CICS a night or two ago. She has knowledge of the vast majority of implantees across the country, logging their circumstances and status re: uni/bilaterals.

She couldn't name one other post-meningitic child who has not had PCT-funded bilateral implants over the last couple of years at least. We've tried to find them to compare notes - it's what you do in this club.

Do you know where they are...?

TV time again

For those of you in the East Midlands area of England (as defined by those fine folk at the BBC) Tom and I will be making an appearance on your TV screens tonight.

East Midlands Today runs from 6.30pm and Tom was looking, and being, so darn cute that I wouldn't be surprised if the whole show wasn't just an endless loop of him. I understand that owners of the finer satellite systems can choose which region they watch and the show is available on the internet for 24 hours after broadcast. It'll probably be somewhere around here.

UPDATE

You'll have to take it from me that there were lots of cute shots of Tom bothering the cameraman and ramming his legs with a toy car... ah well...

You've got until around 6.30-7pm GMT on Wednesday 7th to see my insightful contribution to the national debate on bilateral cochlear implants - as I thought, its available on the BBC East Midlands Today webpage - it even has it's own link 'Fight for cochlear implants'.

The main thrust of the story is, as it should be, Mike Batt and his family. Mike was the first child to be implanted in the UK - back in 1989 before the NHS would fund and in the face of much opposition from the deaf community. He's got his first class honours degree and is off making his contribution to the national coffers - paying the state back for... oh.

You'll have to take it from me that I said lots of erudite things that didn't make the cut - powerful arguments exposing the ridiculousness of the funding lottery etc. etc. You might be able to imagine how much I spewed forth (if you've delved into these pages at all). I also said a number of things that, out of context, might not hold much water so I'm kind of glad they didn't get out...

National Healthcare (abridged)

There has been a soupcon of emotion around these parts over the last day or so, much of it stemming from an appointment we arranged for Tom yesterday. In the context of the appointment we didn't find out anything that we didn't suspect already but the act has been the equivalent of merrily flicking the scabs off a number of old emotional scars that Nik and I like to keep to hand.

The appointment was with a children's physiotherapist who specialises in assisting children who have suffered brain injury.

There's scab number one right there.

Ever since the darkest days were pushed behind us and we were no longer waking to find that Tom was still in a coma, the small matter of the lesions that revealed themselves on Tom's MRI ('felt to be secondary to meningitic end arteriolitis') had been placed carefully to one side. The horrific imaginings that we had tortured ourselves with following the ICU consultant's carefully worded explanation had simply not come true. Although profoundly deaf, Tom was unchanged in terms of intelligence, character and capacity to speak. Within a couple of months he was walking on his own again and nagging fears there were abated. He was the same boy.

But yesterday's appointment brought it all back. The physiotherapist's assessment was that yes, our friend Deborah was on the nose with her diagnosis and Tom has some core stability issues which he does his level best to accommodate and conceal. There is also a degree of hypotonia - or poor muscle tone - which wikipedia identifies as a possible outcome of meningitis, presumably because of damage to the area of the brain that coordinates skeletal muscle.

As I said above, this isn't really news although it does shed a different light on how we move forward. Up until now, as is obvious from this blog, the focus of our attention has been Tom's hearing and his learning to make the most of his cochlear implants. His progress with these has, and continues to be, outstanding. Now we must help Tom in whatever way we can with this challenge.

There is another old wound that has been opened by these events though... Linda, the physiotherapist who came and assessed Tom and is starting to work with us on exercises and games to help him? She's a private physiotherapist.

Tom made two outpatient visits to the children's centre for physio before he was discharged over a year ago. He had only been walking again for a couple of months and was much more unsteady than he is now. Yesterday we discussed the prospect of getting Tom re-referred in the light of her assessment but Linda, a former NHS physio herself, suggested it would be pretty unlikely that he would be regarded as a priority and seen any time soon.

Well that felt good and left us in good cheer...

I must state again that we are eternally grateful that we still have our son. To the doctors in A&E who quickly diagnosed the meningitis that our GP had missed, we thank you. The doctors, nurses, OTs and physios who cared for Tom (and us) through that three week period - you are all wonderful, dedicated people who gave our son exemplary care and started him on his road to recovery.

The cochlear implant team at Nottingham had Tom on the operating table within 8 weeks of losing his hearing and switched on in twelve - incredible work that set up the success story that is our son's language development since.

But it is beyond this acute phase of Tom's treatment that the cracks show and the hurt begins.

I used to be a big fan of the movie and TV series M*A*S*H. Beyond the political references and marvellous satire, the depiction of doctors doing heroic patch-up work as rapidly as they can has stuck with me and is brought to mind now. Whether it be the budgetary constraints, competence or lack of will, there seems to be a point where a patient is considered 'patched up' and 'well enough' to be dispatched back to the trenches. Presumably the necessary target has been met and that patient adds no more value to the hospital or PCT's ratings. Whatever the reason, it is too soon.

Tom was considered 'well enough' with one implant and 'well enough' with a degree of hypotonia but is he? It is patently obvious that more could be done as we have found. Through the generosity of a charity, family and friends (and the fact that we have good jobs) we have been able to do more - to continue Tom's recovery.

And the main reason? Because we've got enough money (just).

Enough to pay for a second implant, enough to pay for Auditory Verbal therapy and now we will find enough to pay for private physio.

This isn't a case of parents making exaggerated requests for superfluous treatments because they regard their child is special in some way - these are obvious needs identified by respected professionals... and turned down by others.

I don't have an answer for this... I recognise that the vast majority of health professionals we have been in contact with would have loved to carry on Tom's treatment but thinly spread resources just won't stretch. What I hate though, is the inherent waste, the failure of processes, the inconsistency of provision and the deceit.

Something has to change because this isn't quite right.

A Tracey Day

'Not a Karen Day?' Tom inquired over breakfast.

'No it isn't' I confirmed. Karen days are fine (Karen being Tom's adored childminder) he just likes to know what's coming so that he can adjust his list of demands accordingly.

'Its a Tracey day!!' - Tom suddenly remembered what we'd been talking about yesterday evening. It has been a while since we've visited the implant team but Tom hasn't forgotten the drill.

'I say to Tracey 'Can I play with your cars please?' and Tracey says to Tom 'Of course you can'' Tom rehearsed this opening speech a few times before we got there and I scripted a few extra bits such as 'It might be nice to say hello first' while hoping that Tracey didn't fluff her lines.

I needn't have worried. Tom adores audiology sessions - these people with their fancy room, computers, loudspeakers and all those wonderful games. The simple truth is that it is evident to the audiologists (only one of whom is called Tracey. Susan sits in the booth doing her bit without getting any of the glory) within a minute of us walking in that everything is just fine. Despite it being close to six months I would guess since we were last there, Tom is immediately at ease and rabbiting about every aspect of the day thus far that has caught his attention.

The session involved a variety of tests on both ears and Tom concentrated for pretty much the full two hours although he was unable to stifle a yawn towards the end and we began to suspect he was sabotaging the exercise a little. The results were, however, fabulous. Tom is hearing down to the 30db level and is differentiating between similar sounds heard through a loudspeaker - 'horse/house', 'cup/duck' and the like.

I've said it before but its worth reiterating - these implants are an utter marvel.

Our route home took us past the hospital where Tom was admitted with meningitis and where we all spent those long tortuous days and weeks, not knowing where any of it would end or what we could hope for. I don't plunge into any kind of regressed depression when I pass there these days which is a good job considering how frequently we are nearby or visiting. I do think back though.

'That's Mr Twigg's hospital!' shouts Tom and I chuckle with a degree of relief. I'm sure Mr Twigg will be surprised to hear that it's his hospital but it'll serve for us. Mr Twigg is Tom's orthoptist - he has lots of funny toys he puts on the end of pencils that light up. We visit his clinic frequently for delightfully non-invasive, utterly routine tests and if that's all that comes to Tom's mind when he sees that hospital then its more than alright with me.

There doesn't seem to be any recollections of events such as these. I hope it stays that way and that when he reads what I've written here it will seem like a slightly scary thing that happened to someone else a long time ago. He is starting to become aware that he has 'special ears' and we are building his understanding as carefully as we can but the sad stuff that got him to that point is for us to carry and protect him from.

Apologies for the slightly reflective tone at the close - in the midst of the brightness that Tom's astonishing progress continues to be there will always be these reminders.

A response to Fintan's comment

Hi Fintan,

Here are my answers to the questions you posed in the comment on the post ‘Radio Shows that should know better’. I hope it goes some way to demonstrate that we did not pursue cochlear implantation lightly but that it wasn’t a difficult decision for us, or many other parents, to take.

Fintan's comment is in block quotes - my reply is in italics.

Hello,

Lets hear 2 sides to every story... ah well I cant join the debate.. no transcript.

You nearly lost your child through meningitis and your doing what you think is best for Tom after all you are a parent.

I would tend to wait till technology improve before implanting people .. but happily they do have guinea pigs.

The technology is progressing at an enormous rate - with his processors Tom is able to interpret the full range of speech sounds and is completely ‘peer appropriate’ in terms of his language skills. He sings, he shouts, he mimics. He has an array of 'silly voices' that he uses to make us laugh and get his own way. His voice is an incredible tool that he makes use of every minute of the waking day.

Considering the impact that meningitis can have on the cochlea in a very short time span (the fluid channels often turn to bone making implantation difficult or impossible) and the key language development phase that Tom is in, waiting was just not an option. Happily, Tom got to join the thousands of guinea pigs around the world and got to speak.

I have a few questions to ask is..

1) did you meet any implantee before Tom was fitted?

Yes, we met a number. None wanted to remove their implants.

2) were you aware risk of meningitis after having a implant?

We are only too aware of the risks of meningitis both with and without implants. We watched our son lie in a coma for four days and were told that he may not progress much further. The grand irony is that, in the UK, the vaccine that would have prevented Tom contracting the illness (and, of course, being left profoundly deaf) became part of the national vaccination program in September 2006; five months too late.

What you seem to be unaware of is that all children who are about to be implanted are given the meningitis vaccine too so any risks are vastly reduced.

3) Do you actually think that Tom will never get a job ,have family because of his Deafness?
What exactly is he missing out apart from not hearing music.

I think Tom’s deafness will have an impact on his career choices regardless of whether he had implants or not. I think having his implants and developing spoken language will greatly increase the number of choices open to him. Whether that is a comment on how prejudiced society is, I don’t know. Clearly there are injustices done but it is not my place to campaign for rights for the deaf on the back of son’s disability. I want him to have choices.

4) are you aware that you are saving tax payers money by implanting Tom and sending him to a Hearing School than having to send him or set up a Deaf school?

I am only too aware of that fact. Do I think that is the reason why children are implanted? I suspect it is one of a number of factors that contribute to the calculation of the Quality Adjusted Life Year (QALY) but is that a reason not to implant?

5) Have you asked that when going for a brain scan (for example a motorbike accident)that a implantee will give false readings...

I know that Tom can’t have an MRI without having his implants removed but I suspect that, if circumstances were so serious that such a procedure was necessary, I think we’d be worrying about far more than his implants.

Can you see why some people are against it for example... why bother getting the whole family to adjust when adjusting a implantee is the easier option.

I do understand people’s concerns and, without wishing to appear trite, I hold with the phrase ‘I disapprove of what you say, but I will defend to the death your right to say it.’.

I do, however, take issue with regard to ‘bothering getting the whole family to adjust…’. In the twelve weeks that Tom was without sound we, his parents, started learning BSL as did his grandparents who were around a great deal of the time. They were all committed to lessons and learning but the harsh reality is , for the extended family, when you are not exposed to it every day it would be very difficult to progress. This would put communication barriers up between Tom and his extended family, isolating him from them. That can’t be good.

You do your best to make it sound the poor choice but when ‘the easier option’ brings this much joy to our family I’ll opt for that every time.

Loads of research being made to *cure* Deaf people and as you can now see the research into downs syndrome where you can abort them in womb.
Can you imagine (for argument sake) that you can detect Deafness in a womb and you have the option to abort it.. As you know that any child with a disability is too much work for parents and the cost of help is prohibitive.

Sweeping statements like that don’t help any debate. Children with disabilities cannot be described as ‘too much work for parents’ and hinting at eugenics doesn’t help either. Cochlear implants are about giving people access to sound and, as a natural consequence, spoken language. They are not forced on anyone and they are not about taking something away.

So there is always a debate on who CI benefit? the implantee or the parent?

It is clearly a benefit to society as a whole – I don’t think there is really a debate there. What’s good for the parent is going to be good for the child and vice versa.

I wish Tom good luck in the future and hopefully by the time he is 16 and leave to get a job all discrimination will have ended..

I thank you for your good wishes and hope he isn’t the victim of any discrimination too.

More on the Today Programme

In response to a number of complaints from parents and professionals regarding this interview last Tuesday (24th July), Friday's Today Programme on Radio 4 interviewed Dr. Kaukab Rajput from Great Ormond Street. You can listen again (until 3rd August) to the relevant section at:

Listen again - Friday

There is a transcript available at:

I Look so I Can Hear - Cochlear implants in Children

I don't think the interview goes anywhere near far enough to undo the impressions left by the first piece. There are numerous factual inaccuracies in the original piece that weren't addressed and, by dwelling on risks associated with surgery rather than the potential outcomes, Dr. Rajput doesn't go far enough and doesn't sound particularly convinced herself.

So, as an attempt to provide some balance, here is a section of the transcript from the original interview with Paula Garfield of Deafinitely Theatre interspersed with my comments in italics.

“Well, adults and young people who make the decision for themselves is
absolutely fine by me when they are able to make their own choices.

This is a point that Dr. Rajput starts to make but needs much more emphasis. If it was left until the point children could make the decision then the chances of success are greatly reduced. In infants and young children the brain is growing and developing. It is much more able to adapt to new inputs, as from an implant, and make sense of them. The point is, that by having our children implanted, we are giving them choices not taking them away. We do not deny their deafness but to deny them the opportunity to hear?

But, what I am not comfortable with is babies who are implanted as early as possible because deafness is not a life threatening illness and a Cochlea Implant placed in the
head of a baby has many, many risks

the surgery normally takes around two hours and almost always under three (not the seven stated elsewhere in the interview). The risks associated with it are those related to general anaesthesia and precious little else. There is some suggestion of an increased risk of meningitis which is addressed via a vaccination prior to surgery. There is also a very low risk of contact with a facial nerve - something that any surgeon knows about and knows how to steer round.

After both his implants Tom stayed in for one night. In the US it is now routine to send implantees home the same day.

and the Cochlea Implant is then there for life. The child doesn’t have the choice of taking it off when they have had enough,

the internal part can be explanted if there are problems but there are precious few who need or choose that option. Any implanted person can, however, take the external device off whenever they want. Indeed, I watched an implanted girl and her mother give an incredible presentation a few weeks ago. As soon as the girl had finished doing her piece she sat at the back and flicked her coils off so she could concentrate on her book without having to listen to her mum embarrass her with stories of her younger days.

when they experience tinnitus maybe as a result of it. It’s stuck there.”

The RNID, in this factsheet, point out that most people experience a reduction in tinnitus post implant

This blog is hardly Radio 4 in terms of its audience but every opportunity to point out such inaccuracies like this must surely be taken.

Radio shows that should know better...

I was a bit late in the day getting to this. Obviously I aways listen to the Today programme on Radio 4 but yesterday, what with being Daddy Daycare and all, I had to forego...

Anyway, wouldn't you know it, yesterday's (Tuesday 24th July) show featured an item on cochlear implants. You can hear it until Sunday on http://www.bbc.co.uk/radio/aod/radio4_aod.shtml?radio4/today_mon - the item is about 2 1/4 hours in (around 8.19) - the controls allow you to jump in 15 minute increments.

A play, expressively titled 'Playing God', was being discussed. The playwrite, a deaf woman who's comments were being translated, had a position on implants for children that you mightn't have too much difficulty gathering from the play's title. I'm one of the folk 'playing god' with my child's hearing.

Also interviewed was Emma Nicholson, a Liberal Democrat MP who is partially deaf herself. She weighed in with some heartily ill-informed comments too, largely based around concern about the young age of some implantees.

I have no problem with people having opinions different from mine it's just that, too often with cochlear implants, they are couched in language that brooks no alternative and it was these opinions that were broadcast on a national radio show that is largely regarded as setting the day's news and political agenda with no airtime given to the counter-argument. And when I say counter-argument I mean scientifically proven benefit and factual accuracy.

There are so many untruths and leading opinions in the piece that could leave those who have no understanding of cochlear implants feeling that surgeons in this country were inflicting terrible pain on children for no reason. The desire to give a child the opportunity to develop spoken language and operate in the hearing world (which the vast majority of their parents occupy) is presented as a fool's errand and detrimental to the child's wellbeing.

Those of us 'on the inside' of the cochlear implant world thought that the climate had changed. For us the battle lines are drawn on issues of number of implants (two for all children at least please) not on whether parents should be able to make the decision on their child's behalf. The item actually suggests that the decision should be left until the child is able to contribute to the decision - a stage when the benefits are greatly reduced because of a lack of auditory stimulation to the brain in the intervening, developmental years. These are the facts that need to be put before the opinion-formers when they are listening to inaccurate reports such as this.

Just go and listen - and then write to Radio 4 and possibly your MP too.

World of Sound

A new UK site championing cochlear implants has appeared.

World of Sound has started life with a featured campaign, that of the 'postcode lottery' that currently exists with regard to funding. The opening lines say you can:

Read about the funding issues surrounding cochlear implants and the different viewpoints of a parent, PCT and professional.

You might recognise the parent who shared his views. It was written sometime last autumn I think - funny how little has moved forward for us on the Healthcare Commission and funding front since then (when I say funny I mean not remotely humorous and actually an ongoing source of frustration).

The site presents an even-handed approach giving the PCTs and implant programmes the opportunity to explain their positions re: funding which they both manage do without any mention of bilaterals or the vast difference between the process (and likelihood of funding) for adults and that for children. Seeing as these are the requests that are most inconsistently dealt with across the country, for me it seems a gaping omission. Will someone new to the world of implants grasp that from what is presented here?

Because of this it made me wonder who the target audience is. If you are in the process of being assessed for implantation then you are immersed in much more detailed information than you will find here. You will only come into contact with your PCT if you are unlucky enough to have your implant programme's request turned down and then, well your business case might well be incredibly professional (as the representative from a PCT recommends) but if your PCT hasn't got the cash...

In fact, the more I ponder the PCT's position as written here the more I despair and I'm trying not to do that as much these days.

So if it isn't for prospective implantees who is the site for? It gave me another place to tell Tom's story which can't be a bad thing but in terms of moving the debate on around postcode lotteries, I'm not sure it succeeds. For those who aren't up to their necks in all things cochlear there needs to be a little more 'back story' to put the viewpoints given in to some perspective and I would like to see an editorial point of view?

Coming down on one side or the other is not as straightforward as it might seem though (he says, answering his own question). While Cochlear (who sponsor the site) appear to have a position on bilateral implantation (they regard it as the 'standard of care') they remain careful not to upset the people who, usually, have to buy their kit or those who have some influence over which device a recipient chooses.

Overall, any attempt to bring the debate to more people is a good thing and, given the complexity and subjectivity of the topic in hand (and the fact that I got to rant with Tom being a user of the Other Brand), I'm prepared to cut the World of Sound a little slack with their position astride the fence. I wait to see how it develops.

I think I've joined a cult...

There were a few occasions on Saturday where I thought we might have accidentally joined a cult.

There were a number of telltale signs. The most telling is that the system in which we believe, in which we trust, is regarded as unorthodox by the ‘authorities’ and, if we do find support and interest from ‘establishment’ figures then it is spoken about in hushed tones. Despite the opposition we might expect, we were encouraged to evangelise about our belief and the way it had helped us even if we met with resistance and hostility.

There were other, more subtle, indicators that completed the picture for me but I’ve always had an imagination that leans to the fanciful. We met in a large Edwardian house on the outskirts of Oxford (perfect cult territory), everyone smiled continually and, most suspiciously, there was a great deal of communal singing. Even our responses; general elation with occasional lapses into tears, fit the cult theory to a tee.

So what were we up to? We were attending the far-from-sinister Auditory Verbal UK Parents’ Conference, held near the organisation’s premises in Bicester. Of course Auditory Verbal (AV) Therapy isn’t actually a cult but, in the UK, it remains a fringe practise. The AV approach to speech and language development with deaf and hard of hearing children is not outrageous; in fact it strikes us as mostly common sense. So why can’t a well proven approach be considered the norm in the USA and elsewhere not be part of the mainstream here in the UK?

We didn’t even hear about it though ‘official’ channels - it was only via the international CICircle discussion forum and exchanges with other parents that we heard about Jacqueline Stokes and her team. The same goes for the John Tracy Clinic in California – an organisation that promotes verbal communication and run an excellent correspondence course.

Too many of our early interactions with ‘official’ therapists and health professionals have left us feeling deflated at a time where one would hope for optimism and talk of Tom’s potential with these new implants. Realism shouldn’t be excluded but the extent to which expectations are lowered is far from helpful. There is little attempt, bar one notable exception, to challenge us as parents to anything like the extent that Jacqueline does. Is this approach borne out of a fear of failure? A knowledge that the state just can’t guarantee the quality of its practitioners or its provision?

It was only at AV that our role in Tom’s development was really challenged in a vigorous and inspiring way. The way of the state is much gentler and easily missed or dismissed. It seems ridiculous to me now, how ‘British’ their approach is and yet, perversely, how understandable (to a British psyche). Weighing up the best interests and life chances of the child against the fear of causing offence? Sorry, we don’t ‘do’ tough love here. You do what you can and we’ll be here occasionally.

As a parent of a very sick child, or one who has just been diagnosed as deaf, you are very raw. Feelings can be hurt easily but, at the same time, you are desperate to wrestle back some control. After all the tests, diagnoses and interventions there is, at last, something you can do and surely there isn’t a single parent in that situation who wouldn’t want to do everything they could? While there may be moments where you don’t feel you can do any more, that is far from being the prevailing sentiment. We don’t deny that our child is broken but we will do everything in our power to minimise the impact on his future. Sod Holland - we want Italy... and Holland (for those Dutch relatives of mine).

We heard numerous therapist horror stories on Saturday from other parents that left us feeling reasonably lucky in our interactions with professionals. Many could be aggregated under the heading of ‘Don’t get your hopes up’ while others talked of being made to feel grateful for any intervention. I don’t know how prevalent such attitudes are but it should be plain what impact they have on parents and families who have just been confronted with the news that their child is deaf.

As I’ve written before we have been incredibly lucky with our Teacher of the Deaf, Tania Sorenti. She was willing, nay excited, to collaborate with us as parents and our choice to use AV UK. She has undoubtedly contributed to Tom’s enormous progress. I only wish, after hearing other parents on Saturday, that there were a few more of her to go round.

It is so important to say this over and over: cochlear implants are astonishing devices but without appropriate intensive therapy from driven, enthused professionals who believe your child can achieve pretty much anything, then there isn’t much point.

An important piece of history

Stumbled across a link to this article in the Australian Herald Sun over at the Deaf Blog (who I wish would stop that video kicking off on loading the home page).

A short excerpt:

Holly McDonell is living proof of the difference science can make. The 24-year-old has just graduated with first class honours in law but two decades ago she was the world's first Cochlear implant recipient.

As she celebrated the 20-year anniversary of the breakthrough Aussie invention with the surgeon who made it possible, Ms McDonell reflected on the implant that transformed her world.

"Without the implant I am completely deaf but with it I can hear just as well as everyone else," she said.

This is a technology that is unlocking doors in such an astonishing way. This is the sort of story that fuels parental ambition and that Tom will spend his teenage years wishing his dad had never seen.

Nagging doubts put to rest

Cochlear implants and music appreciation is an interesting sub-topic and one that has given us some cause for thought. With so much of pre-school and early school years featuring action songs and the learning of rhymes, we feared Tom's hearing would be a significant barrier to participation. In the paranoid parents' brain I foresaw a dispondent son standing on the edge of a circle while all around him his peers Dingle Dangled their Scarecrows and Wound their Bobbins Up.

Michael Chorost, in his article 'My Bionic Quest for Bolero', addresses the issue in an engaging manner without skirting round the science of it. The limitations of the 'channels' of sound offered by implants makes distinguishing between note close together on the scale impossible. There is promise of more with Advanced Bionic's HiRes 120 Strategy .

We aren't quite at that level of need yet. The 16 channels (well, 15 in the left ear) that Tom is getting seem to be more than sufficent for him to get the tune, the all-important actions, most of the lyrics and a huge smile on his face.

As for the other nagging doubt - to explain it I have to admit, in a slightly guilty middle-class parent way, that Tom likes a bit of TV every once in a while but I've always had the impression that Tom wasn't really understanding much of what he heard. The quality of the sound is different to natural voices and there aren't always visual cues to aid understanding so I assumed it was just the bright colours and rapid movement that was holding his slack-jawed attention.

Watching Tom at AV therapy yesterday allayed this fear and much more besides. I watched most of the session with tears in my eyes; I was so moved by what Tom could do. It was such a simple exercise (as is so much of what we learn with the marvel that is Jacqueline Stokes). Jacqueline played an audio story on an old style mono cassette recorder which Tom and she followed with the book proper, stopping frequently to talk about what was heard and how it related to the story.

Tom was utterly inthralled; attentive, excited and hearing everything. He didn't miss a trick and, when the story was finished he wanted to plough on into the next one. The story held his attention for upwards of 20 or 30 minutes and then, with very little encouragement, he proceeded to recreate the story with toys for another half an hour.

Just to make anyone aware who's joining this story at this point (and remind the rest of you); Tom is deaf, relying on cochlear implants... and he's not quite three years old.

He is loving sound - he's also learning words that we haven't taught him (this is where it starts to get dangerous) and experimenting with the language he's learnt. His progress is such that we've scaled down to once every two months with Jacqueline. There's the transition to school to manage but I'm beginning to suspect that Tom won't be the quiet one on the edge of the circle - he'll be the irrepressible one that the teacher needs to shut up.

Spin the wheel and place your bets...

And so it goes...

Nicky received a phone call yesterday that left us both delighted. The fact that it also struck a particularly raw nerve makes it worthy of comment here. Another family in the CICS club that we have come to know had just been through their bilateral implant appeal hearing. Their son, deafened by meningitis at the age of eight and implanted (on one side) for a year and a half or so, has been given the go-ahead by their local PCT (Primary Care Trust). A PCT, by the way, that shares a border with ours but, hey, there are no prizes for proximity in this particular lottery.

The news that one more deaf child will benefit from bilateral implantation is an event to be celebrated but we would have to be supremely altruistic not to feel a pang of frustration at the astounding randomness of it. The weight of evidence is not greater in Derbyshire than it is here and I'm pretty certain their case didn't differ too much from ours. How can I be certain? Because we spoke at great length in the days leading up to the hearing and shared everything we had used ourselves with them.

Wait, it gets better.

A family in the South of England got a bilateral implant for their daughter on appeal in autumn last year. Their PCT were persuaded by an excellent letter written by the mum, accompanied as it was by useful references and web links. The letter was reprinted in the CICS newsletter, hopefully so that it can be sent to the ever-dwindling number of recalcitrant (and/or broke) PCTs who still claim there is insufficient evidence.

I bring your attention to this one because the article that accompanied it contained lines such as this:

I've always thought that families who have a deaf child are a part of a bigger spiritual family. Jason, Nicky and Tom Broekhuizen are living proof of this belief, as if it wasn't for that late night phone call and all their insight I'm sure that the outcome for funding would have been different.

This is not an attempt to 'big' us up; any insight we have is simple research and the painful experience of going through the process. We families are all in the same boat and we will happily talk to anyone about our experiences. Its not even as if we're charmed in any way either ('natter to me and all your implant wishes will come true') as other families will testify. The point is, of course, that as close to the same case as makes no odds has been made to several PCTs with profoundly differing outcomes. This is not a stunning revelation but that doesn't mean that it is any less galling or any less absurd.

I have tried to understand healthcare legislation once or twice and it bored me to tears (you'd think it was done that way deliberately). I am sure, somewhere 'in the beginning', that there were some semi-solid reasons for allowing different PCTs to decide for themselves which services their citizens could have access to but didn't anyone foresee this sort of situation?

There's something basic about wanting to be treated fairly - some of my clearest of memories of school teaching are of kids protesting vehemently about perceived unfairness - and it is that injustice which keeps us fuming. If no-one in the country had access to bilateral implants it would undoubtedly be easier to accept. Undoubtedly we would be lobbying like crazy for parity with the US or most of Europe but it wouldn't be quite as 'in your face'.

I'm at a loss. What next then? Any ideas?

Easy like Sunday Morning...

Here's a little movie Tom and I made the Sunday before last. I'd like to pretend that it's the kind of things we get up to every weekend. It makes me out to be quite the dynamic, funtime dad. Participatory food preparation in the kitchen followed by amusing games.... it's all educational play in our house.

Yeah right.

The closest we get to fancy kitchen action most Sunday mornings is slumping in front of 'Big Cook Little Cook' re-runs. I don't know what got into us that day - a combination of good sleep and those poppy seeds we were chomping on. Rest assured, normal service has since been resumed.

If any of Tom's speech therapists watch this; I really didn't help him out too well with the questioning about the breadmaking did I? Sorry Katherine, Jacqueline and Tanya. I will do better next time.






Sunday Morning Movie on Vimeo

Baby's first...

Tom has abruptly entered a period of determined self-sufficiency - but on his terms.

For example - all stages of the toast-making process are preceded and punctuated by a forceful 'Tom-tom do it!' or 'You do it!' (he means 'I' - he has a very individualistic understanding of personal pronouns and uses them liberally and in defiance of common conventions) but when it comes to actually sitting and eating the stuff, the only way its going to be finished before Christmas is if its offered up to his busily chattering mouth.

Getting dressed is another area where Tom is making a bid for autonomy. Its very cute watching him get in a tangle of vest, pyjamas and processor harness - unless its one of those rare occasions when work-at-home dad has to catch a train to the big smoke. He knows... of course he knows.

So yesterday morning, during the daily dress-a-thon, Tom achieved a first which the baby book seems to have missed out of its list of dates to be celebrated - he reattached his magnetic headpiece.

'Tom-tom put your ear on!'

It makes sense to us.

Seminar Postscript

I wasn't the only parent speaking at the Ear Foundation on Tuesday and, on re-reading my last entry, I feel its important to give them a mention as they, like us, never gave up even when those who support bilateral implantation were saying it was too late.

Tricia Kemp, southern coordinator of CICS spoke passionately and incredibly eloquently about her son who, born deaf, didn't receive his second implant until he was 18 and is benefitting. Aside from the bilateral dimension, Tricia's son's story is particularly thought-provoking. They sought an implant when they weren't offered in the UK and had to travel to Germany in 1991 amid incredibly negative reactions from professionals. We have made some progress in this field then...

Another Mum, Annie Wilson, had brought along a video of her 11 year old explaining for himself how his second implant, carried out only a year or two ago, is helping him. It was very touching and unfortunate that the conference as a whole didn't get to see it. Maybe she'll post it on Vimeo (the thinking person's smut-free alternative to Youtube)?

Tom's story is short and relatively painless compared to some. We never use the word 'lucky' to describe our situation - but on the big scale of unfortunate-stuff-that-happens-too-often, maybe we did OK.