Not quite there yet...

This was supposed to be the entry that opened with an excitable, emphatic 'We're in Edinburgh!'... but...

Instead I'm sat at a borrowed picnic table that's serving as a temporary desk, surrounded by empty shelves and wondering just how the English house-buying system ever evolved into this drawn out torture. Like with any of these things, it's the uncertainty that gets to you. Our buying process is currently suffering from information constipation - there seems to be a hold-up a couple of links down the chain that wasn't as close to not being a hold-up as we were led to believe... so plans have got out of sync and, well, we now have the minimalist space we once dreamed of (and there's a little too much echo), a rather limited array of crockery... and I am typing at a picnic table. As you might have guessed, we're a little ahead of ourselves and the majority of our possessions are packed up and gone.

Tom, for the most part, is coping very well with these unsettled times. There's been the odd wobble - the questions about whether he'll still be going to his school and whether Mrs Charlton and Mrs Henson will be there - but for the most part he's finding the process exciting. We were nervous about the whole process. There's a story my parents like to tell about moving house when I was around two - I refused to remove my coat because I wasn't stopping. The length of time that this went on for has, I think, crept up over the years. But we have been sensitive to the little guy's feelings and Nik has done an incredible job of preparing him. We learned very quickly that packing stuff without his knowledge would meet with an adverse reaction and so he has been involved at every step. He helped make the boxes up (and hid in each one), pack some of his toys (his first line one morning was 'I've packed some more of my toys!' after we'd left an open box in his room) and load his push-along car on the van.

The biggest sigh of relief came with the dismantling of the beloved racing car bed. Tom dived in with his screwdriver and, in five minutes, the job was done. He's even loving the whole camping on the floor thing. All we've got to do now is move...

So why Edinburgh? Well, if you're in the UK and follow such things, this might be reason enough but we have a few others too. The company I work for has opened an office in the city (on the Royal Mile no less) and, after four years, I am done with working from home. Nik did her studying in Edinburgh, loves the city and she has family there too. For Nik and I then, the city is perfect but what about the wee man?

First and foremost, there is a pretty solid financial incentive. When we move, Tom's 'private' implant will no longer be our responsibility and will become state funded. I've checked. Twice. Just to make sure. If Tom had had meningitis in Scotland, under current legislation he would have had bilateral implants automatically and we discovered that this level of support applies to incomers too.

So that's good news for him... the sort that leaves a bittersweet taste given the number of children and adults with single implants in this country who don't have this option open to them (and NICE are yet to rule either way - current expected date September 2008 with a 4th appraisal committee meeting on 17th July). We have always counted ourselves fortunate in being able to push ahead with the second implant in spite of the decision made by the PCT and have prepared ourselves financially but this is an enormous relief and provides some stability and assurance. Until the NHS goes belly-up that is.

We've also found a wonderful school a few minutes walk from where we're going to be living. It looks like a fabulous fit for Tom - a little offbeat, small and focused on the individual. It's worthy of its own post but here's a primer on Rudolf Steiner schools. I've just watched one of the dvds posted there and discovered that Tilda Swinton is a Steiner parent. Now I'm not one to get starstruck but she does say the very thing I was going to finish on - the school makes you wish you went there and you can't get a much more positive recommendation than that.

2 ears 2 hear

I made contact with Charles Arthur soon after Tom came out of hospital - his son had a cochlear implant around the same time as Tom and it is great to read about the progress he's making. Charles' wife Jojo Moyes has written a piece for The Daily Mail supplement that is well worth reading - 'How Lockie broke through a wall of silence'. I hope you don't find the paragraph that follows the piece too alarming - I'm not sure about the relevance of the 'downstairs security check'.

On a slightly more self indulgent note, I've been contributing to getting a website off the ground that may be of interest to cochlear implant watchers. Hatched last summer as an attempt to get a few things out in the public domain about bilateral implants in time for the outcome of the NICE evaluation, 2 ears 2 hear has been launched. Written in conjunction with another parent of an implanted child, the website has a number of intentions: to support parents in their efforts to get what is best for their children from their PCTs, raising the profile of the issues surrounding bilateral cochlear implantation and to put some pressure on decision makers in the run up to the final publication of the NICE recommendations.

NICE kind of beat us to it with the publication of their draft recommendations last month but there is still a few months to go before the final report. As I've written before, if these recommendations had been in place when Tom was deafened, he would have qualified under two out of the three published criteria. We believe these recommendations don't go far enough. With them as they stand there is tacit acknowledgment that two implants are better than one but the additional cost of the second operation appears to tip the cost-effectiveness balance along with the gradual decline in likely effectiveness that is associated with failing to stimulate the auditory nerve.


Tomwatch update

Two weeks in and nursery school is still pretty appealing. We have had our first taste of on outcome of parenting a school age child - we only know as much as Tom is prepared to tell us... and that is highly variable. And often seems to deviate from reality.

A recent visit from the physiotherapist confirmed what we were suspecting - Tom is making excellent progress. He is far more stable and physically adept in terms of his gross motor movements (hark at the scientific terms) and becoming gradually more confident with a range of activities. The question I always ask is 'how far can he go?' and, like most of the questions we ask to professionals, it is met with a much qualified, carefully phrased 'don't know'.

What can be said though, and this saddens me however frequently it needs mentioning, is that Tom would be making far less progress if we had taken the NHS approach and accepted well enough.

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...?

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.

Conversations about cochlear implants

I’ve been talking to people about cochlear implants this week. No surprise there really, although I am being a little more selective and trying not to instigate such conversations with everyone I speak to. I think it particularly unnerves the guys in the sandwich shop. I am jesting – I have it much more under control than that. I hope, anyway.

Yesterday’s conversation was a telephone interview with a reporter from Trent FM, a local commercial radio station. Well informed on all matters cochlear, Matt the reporter asked some fairly searching questions, my rambling answers to which have been sliced and diced into some semblance of usefulness and was put out on the air in news bulletins during the course of yesterday. I have no real idea how it turned out as I was in meetings in London all day but the nagging suspicion that I sounded like a buffoon lingers. Nik assures me that I didn’t and they even used some excerpts of Tom chatting in these video clips so I’m sorry I missed those.

The questions were fairly wide ranging although the focus – the bits that stand out most prominently in my memory at least – concerned matters of cost, bilateral implantation and PCTs. I have no idea which sentences made the cut but I didn’t envy him the task of trying to make sense of my tortured, multi-clause ramblings.

One thing I did try to include in my answers was the whole issue of habilitation and speech therapy, a topic that was at the forefront of my mind following a visit to AV on Monday. The media coverage of cochlear implants tends to focus on provision and cost; who’s got one and who’s got two; which Primary Care Trusts (PCTs) cough up and which don’t. I’ve been guilty of the same. These are the emotive subjects that have an immediacy people unfamiliar with cochlear implants can grasp and, hopefully, share in our outrage. But getting the implant is far from the end of the story.

Access to long-term, high quality speech and language therapy is of vital importance to the successful use of cochlear implants, particularly for young children. Inside ‘the club’ we understand that but access to it isn’t guaranteed. It’s another area subject to local variation in state provision. It is something that is also hugely dependent on parental involvement and commitment.

We haven’t had much cause to complain in this respect because, for a change, we got lucky. Tom’s Teacher of the Deaf (from the Local Education Authority), Tania Sorenti, is fabulous in every respect. The Meningitis Trust have assisted with the expense of additional therapy via Auditory Verbal UK; a group of people who, I think, should branch out into parenting courses such has been their impact on us as a family. Tom continues to be a happy, fun-loving and largely compliant two year old. While he is clearly blessed with fabulous genes from his mother, I’m certain that the clear messages he gets from us contribute to this. We use spoken language to plan, negotiate and defuse and it’s paying off.

At the weekend we watched while Tom tried out negotiating for himself with the son of some good friends of ours. In an attempt to regain possession of his beloved ‘Lightning McQueen’, Tom found another car lying in the garden, took it over to Patrick and asked him to swap. No attempt to snatch or wrestle the car back, just language. Patrick was having none of it, of course – he too is in thrall to the Power of Pixar – but we were very proud and are now building Tom’s skills further such that he will offer strictly time-limited loan schemes. I fear a future in politics in the offing.

We couldn’t imagine doing any less for Tom. The feeling of utter helplessness that is experienced when your child is beyond your care is something I never wish to feel again. Everything we have done since then has that time, that period in our family’s collective past, as a counterpoint. We are seizing every opportunity to ENable our son, to enrich his life and to make sure his deafness has no detrimental impact. The profound side-effect is that he is become increasingly eloquent.

Rob Rummel-Hudson mentioned ‘Holland’ a post or two ago; a poem that attempts to prepare parents of disabled children for a world of different expectations. He came to a conclusion that I would have to agree with, having myself gained initial comfort from the copy of that poem that is pinned to the wall of PICU in Nottingham’s QMC. Tom wants Italy and he shall have it.

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?

Bilaterals in the News

Bilateral implants have made the national news this weekend courtesy of this article in the Guardian.

The parents of a six-year-old girl who was born profoundly deaf are complaining to the Office of Fair Trading after the NHS refused to provide her with a second "bionic ear" implant, leaving them with a £30,000 bill for the operation.

Six-year-old Sarosha Byrne from Nottinghamshire will today undergo an operation to receive the cochlear implant to fully repair her hearing. But her primary care trust has refused to foot the bill in what her parents say is a postcode lottery affecting more than 3,000 children.

The case is now the subject of an OFT inquiry after her parents complained that Cochlear, the multinational company which makes the implants, is charging £5,000 more for the device in the UK than it does in other countries.

The cochlear implant costs £12,563 in the UK compared with £7,770 in Sweden. Parents here also have to pay £19,000 for the operation to insert it.

I’ve talked at length to Sarosha’s father Dominic on numerous occasions - that is the way of it when you join elite clubs such as ours. The circumstances of our children’s deafness and treatment have differences; Sarosha was born deaf and had her first implant four years ago whereas Tom lost his only a year ago and was implanted shortly after, but the similarities and shared challenges are more numerous. She is a shining example of what progress can be made through appropriate therapy (Auditory Verbal courtesy of those nice people in Bicester), good professional involvement and parental dedication as, we think, is Tom. In addition, many of our battles with the authorities have followed parallel courses.

We started talking soon after Tom was first implanted; the Byrnes’ had been fighting for bilaterals with a different Primary Care Trust (PCT) and we compared notes frequently. Back in August of last year we were even interviewed for the same Times article – a postcode lottery piece that was written as a follow up to this successful appeal but wasn’t published. Now their story is being told but with a few extra frustrating and painful chapters.

Cochlear’s pricing structure is not geared to rip off private patients like the Byrne’s and ourselves. In the UK, Cochlear’s main customer by an overwhelming majority is the NHS – it is them they’re dealing with. Does the health service know about this huge price differential between the UK and elsewhere? Is there an explanation to offer? Are they doing anything about it or just leaving it up to people like Dominic and Shamim?

There is, of course, a double whammy. Sarosha and Tom were turned down for second implants for a smokescreen of reasons around how ‘unproven’ bilateral implantation is. Apparently, there isn’t the proof that hearing out of two ears isn’t better enough than hearing out of one (except when it’s treatable by relatively inexpensive hearing aids). Excuse me for sounding facetious – I just need to shorthand my way to the point. The reality was budgetary; the amount the (NHS) Implant Team charges the (NHS) PCT for a second implant isn’t much less than they charge for the first (in the region of £30,000 for the first year) partly, one must presume, because of the cost of the device. So the inflated cost contributed to the initial refusal and then has to actually be found because you're the dedicated family who reads the evidence and knows what counts and what's at stake.

We didn't choose Advanced Bionics because of the price - when the device is given via the NHS, as the first was, the decision is made based on everything but. As it turns out we chose a company who made it considerably easier to afford the second implant than Cochlear but we'll still be cheering on the Byrnes' in their fight. The manufacturers have a role to play in the drive towards increased access to bilateral implantation. Their costs feed into the dreaded QALY equation and could well tip the balance.

Of course, the NHS has an even bigger part to play with its internal market and inefficiencies but that's for another day.

Rant over.

Tom media watch

For those of you who get a kick out of seeing Tom mentioned around the web - or maybe that's just me - the local paper - The Nottingham Evening Post - namechecked him in this follow-up article to the Guardian piece (hope the link survives - they can be a little flaky).

In a slightly more exclusive publication, The Ear Foundation's Spring Newsletter, Tom has made the front page. Admittedly, it's the back of his head but they did take lots of photos of him and Nicky which are featuring in their Steps Together resource material. That shouldn't be the only reason you decide to purchase this incredibly useful pack, fabulous though the pictures are.

Waiting Again.

Early next week, after 7+ months of (presumably) gradual ascent in someone's in-tray, we should hear the outcome of the Healthcare Commission's Independent Review. I have touched on their place in the grand scheme of things a couple of times at least (I wasn't so hot on the labels in the early days). They're frequently described in the press as the 'Health Service Watchdog' which isn't a bad description but, considering the size of the Health Service, I wish they had more than one dog to watch it.

So we had to complain about our treatment, or lack of it, by the local PCT. We compiled what I'm tempted to call a dossier about the PCT's exchanges with us, particularly the appeal panel session itself and the increasingly isolated position of our PCT with regard to bilateral implantation and meningitis.

I don't know how this will end. In retrospect, it seems to me that we took something of a scattergun approach to the complaint, including as many possible angles in the hope that one of them was the required trigger. Like I've said before, these dealings with bureaucracy feel like a particularly cruel children's guessing game. There is a right answer, they're just not going to tell you the question and will, if the mood takes them, change the answer if you get too close with your guesses.

I'm not sure what range of actions are open to the Healthcare Commission. We give short shrift to the dream scenario, where an outraged 'Commissioner' demands the PCT apologise and reimburse us for Tom's second implant forthwith. Instead we kid ourselves that it's a done deal and the outcome will be along the lines of 'while it is unfortunate, the PCT were within their rights to...'. And so we prepare for the next step.

Notes from a Seminar

The Ear Foundation held a major seminar on Tuesday (6th March) - 'Bilateral Implantation: Two implants - always better than one?'. The agenda was littered with speakers who are big names in the field of cochlear implantation and audiological research, not just in the UK but across Europe and America. Somewhere down near the bottom of that list, representing a parent's take on all things bilateral, was me. Seeing as we live a stone's throw from the Ear Foundation and Tom is one of the few bilaterally implanted kids in the country (apparently there were around 50 this time last year so it's safe to say there's still well under 100) such opportunities are bound to crop up.

It was a fascinating day; if you ever get the chance, and have an interest in the scientific dimensions of cochlear implantation, then listen out for Rich Tyler (here's a recent lecture), Gerry O'Donoghue (another lecture) and Paul Govaerts to name but a few.

I didn't, however, spend the whole day with my jaw hanging at the sheer cleverness of this cochlear implant stuff. I've moved on from that; after all, Tom is living proof that it is a phenomenal technology that can change lives. We've been waiting for the literature to catch up. More important were several inter-related issues that surfaced during the course of the day... things that place our recent history into stark perspective.

Whichever way you look at it, there is now more than enough evidence of the published, quantifying scientific kind that bilateral cochlear implants work and add considerable benefit to those who aren't assisted by hearing aid. Some of it, admittedly, has emerged since the request for bilaterals for Tom was turned down back in June 2006 but, largely speaking the professionals have known for plenty long enough. There is also a mountain of anecdotal evidence that describes how binaural hearing (hearing in both ears whether it be a mixture of hearing aid and implant or just implants) enriches people's lives by placing them back into the world of sound in a way that unilateral hearing can't match and that is very difficult to quantify.

Essentially, you will struggle to find anyone working in the field who doesn't feel that bilateral implantation, particularly for young children with their years of language development ahead of them, would enhance the quality of recipient's lives in a deeply profound way. One of the key messages from the conference is that's a given and the earlier the better.

So, as there doesn't seem to be much dispute about the value of bilateral implantation, discussions touched on the thorny realities of public sector funding and the ongoing NICE appraisal. It was at these junctures that things got heated, and rightly so.

The position that has been taken by funding bodies in this country - using the lack of research evidence (of which there isn't really a lack) as a convenient scapegoat for not providing for bilateral implantation - is increasingly untenable. It has always been a disgraceful head-in-sand position anyway; it doesn't take a medical genius to see that cost is the only deciding factor. To pretend otherwise is deceitful and one of a number of ways of infuriating the average parent. Never was it suggested that Tom only wear one hearing aid during the period before implantation and, as Mark Lutman mentioned during yesterday's conference, there is little scientific evidence to back up the provision of two hearing aids as opposed to one. So why were we furnished with two? Because gut feeling tells everyone that aiding both sides is best of course.

The seminar reached its emotional peak when the vice-chair of the British Cochlear Implant Group (BCIG) fielded questions on her presentation; essentially a report of the findings of last year's survey of bilateral provision across this country's 22 cochlear implant programmes. What her results suggested was that there were huge discrepancies in not only bilateral provision across the country but also between implant programme's attitudes. There were few statistics presented; we mainly saw examples of the answers given by the respondents. While it isn't surprising that there are differences of opinion and approach across the country, what alarmed was the tone, particularly when it came to funding.

At Tom's appeal one of the panel asked me a question along the following lines - 'If you had two deaf children and two implants, as their parent how would you choose to share them out?'. This guilt-laying approach, possibly designed to appeal to my liberal social conscience, completely misses the point in terms of how the medical profession should be addressing this issue but is indicative of the way the Health Service works itself. The Implant Programmes are presented with the same choices by funders; for every bilateral someone else misses out on one. Keep asking and we'll take the funding away altogether.

The BCIG vice-chair concluded by outlining the recommendations they were proposing to make to NICE. Their policy statement proposed a list of who should get bilateral implants:

• patients following meningitis/ossification
• in case of additional sensory handicap
• where there is a loss in performance or device function in the first ear
• for participation in research studies.

Essentially the BCIG were preparing to take an incredibly conservative line when the research and the conference was screaming for something much more far-reaching. With the window of opportunity for language development so small, more and more research is indicating that the greatest benefit is gained from both auditory nerves being stimulated at as young an age as possible. All deaf children who gain no benefit from hearing aids should be offered bilateral implants. The longer there is procrastination the more children will miss out.

The contrast with practice in many other countries is stark. A surgeon from Sweden spoke about how bilateral implantation for profoundly deaf children is standard. It took a fight, by parents and the Implant Centres, but they were prepared to fight. With the group who represent the Implant Programmes only offering watered down recommendations, it would seem that we're not up for that sort of fight in the UK. Why?

Is it something to do with how we think about children in this country?

Progress continues - we've got the scores to prove it!

So it's over seven months now since Tom's first implant was switched on and six months since his language was first assessed using the 'Preschool Language Scales-3' (the UK version - the link points to an explanation of the US original).

The idea is that a child's understanding and use of spoken language is evaluated and then compared to a scale derived from a large sample of children aged from birth to just under seven with typical hearing. The results produced give an 'age equivalent' score, comparing Tom to the sample group, for both Auditory Comprehension (does he understand what has been said to him) and Expressive Communication (the quality of the language he uses).

So... how's he doing? Well he's scoring right in the average range for children of his age with typical hearing (and you'll understand why I emphasise that a second time). His 'Age Equivalence Score' puts him at 2 years 7 months; he's actually 2 years 6 months - our boy's ahead! (all dependent on standard deviations and confidence limits of course - I did listen in Stats class).

Proud? You bet. I'm not going to tire of expressing just how marvellous these implants are and what they have done for Tom's life. Charles Arthur, tacking a similar course at more or less the same speed, would hasten to agree. In his latest entry he talks about baby3's remarkable progress with his Advanced Bionics implant after being born profoundly deaf. Interestingly, he's also ruminating on the pursuit of bilaterals - a pathway fraught with no small amount of tension but, ultimately, great rewards.

Its impossible to compare the progress of kids with implants against each other in any meaningful way; different start points, different aetiologies and so many different language experiences post-operatively. This is, of course, why it is tricky to quantify the benefits of bilateral implantation for any given individual - there are just too many factors having an impact on language development - and why any attempt to measure what added benefits Tom's second implant have had over the first is on shaky scientific ground. We're confident it has but the counter-argument goes, he was 'lucky' enough to have had hearing for 20 months before meningitis and was implanted very shortly afterwards. What portion of his success is due to these factors rather than the second implant?

There is no meaningful way of comparing the period with one implant with the bilateral state, not at the age he is. We just see the benefits every day - the way he picks up language almost incidentally, his ever-improving localisation - the 'normalisation' that has occurred. All the considered arguments that appear in scientific publications (and that I described during a bit of a week last July) are being borne out. But then, we had to pay to find that out.

Which is where the PCTs, with their ever-present cash shortages and demands to save money, come in. I wonder which way yours will jump should you ask them, Charles?

Is this really the best way to run a health service?

I have been striving to achieve a zen-like state since Christmas. I have has lots of sleep - Tom has developed a penchant for lying in until after eight o'clock - and feel like I can face the world with a degree of calm and a level of rational thought that tended to escape me in 2006.

Then I watched a report about this on the BBC this morning, described on their website thus:
'Controversy over child referrals'

GP's here have been sent a letter detailing the cost of referring children to the local hospital.

It asks whether any of this could be done more cost effectively.

The letter says the trust spent £1.5 million referring children to the local hospital last year

It points out that 79% were discharged within a day and goes on to say "this area of activity was one which was likely to achieve cost savings"

It doesn't take much of a leap of imagination to take the same view as GP Eric Rose, quoted in the article as saying:

"I think if you're fairly new to the job, you're impressionable, you're given the impression that you're referring unreasonably - you might think again."

"I think it's potentially dangerous. It would only take one child that should go to hospital not to be sent to hospital and for there to be a tragedy and I think there would be a lot of questions asked."

I wonder if something similar had been received by our GP. We took Tom to him the day before he was admitted to hospital with pneumococcal meningitis.

We were sent home.

Depending on your measure of a tragedy we either narrowly escaped one (our boy is still here) or fell victim (he remains profoundly deaf) in a manner not unlike that described by Dr. Rose.

A measure of balance (one that drives my wife a little bit mad) reminds me that meningitis, along with many childhood illnesses, is notoriously difficult to diagnose - there are enough desperate stories of children dying after misdiagnosis in paediatric A & E departments to illustrate that - but does putting pressure on GPs to think financially as well as medically when making such decisions really make sense... to anyone?

Catching Up

I have been remiss of late so far as updates here are concerned; it's not as if nothing has happened - quite the reverse which is why there's not enough time left over for blogging.

Firstly - Tom

Although it is regarded as almost scandalous to say it in certain circles we often 'forget' Tom is deaf. The bright blue coils stuck to the sides of his head are still there (complete with a picture of a tiger on one and a monkey on the other) of course so when I say 'forget' what I mean is that we don't have to make any special considerations when we are talking to him. He repeats pretty much everything that is said, to him or otherwise, and his understanding is impressive and subjective. With his potty-mouthed uncle staying with us at the moment, that makes for some risque situations but, luckily, Tom hasn't cussed at the vicar just yet. He's at the age where he often chooses to ignore what is said to him because it isn't in line with his desires - the fact is that most of our daily challenges are based on him being two rather than being deaf.

And that is a very cool place to be.

Sure, if we look objectively at the pattern of our lives now, there are plenty of 'new' elements that make things less straightforward; from simple things like ensuring batteries are charged, processors are tested and coils staying on all the way to the scheduling of appointments and working with professionals. But, just like everything, you get used to your new reality and, hey, raising a kid brings with it all manner of new skills and situations; by thinking about our situation as just an extension of that it becomes much more managable 'head-wise'.

Claims and forms and appeals and stuff

The good news is that the DWP came through with the Disability Living Allowance for Tom after an appeal which included contributions from the National Deaf Children's Society, (one of) our Teachers of the Deaf and a particularly passionate plea written by Nik which managed to stay just the right side of vitriolic while making it plain that we didn't appreciate being made to jump through all these ridiculous hoops while others, in the exact same situation, received payment after the first application.

There are very good reasons why the DLA isn't handed out without consideration and a certain level of proof but the inconsistency which seems to dog all our dealings with public services can get a little wearing.

As for the greater issue of the ongoing costs of Tom's left implant: we have yet to hear from the Healthcare Commission, who are conducting a review of the PCT's decision. When I say 'conducting a review' I mean ' leaving in a pile of other appeals until their overstretched staff can get to it'. Probably.

Since the first appeal Rushcliffe PCT have disappeared; merged with five others to form some super Nottinghamshire Teaching PCT (this is an approximation - it makes for a long letterhead whatever it is). Our GP has kept up the requests and the funding situation is set to be reviewed by some august panel.... so more watching of this space is required.

So...there's a lot of shrieking going on downstairs. Tom's imagination and sense of fun is growing exponentially. He also has an occasionally abstract view of the world - moments ago he decided that a discarded satsuma skin was an umbrella and that it was raining in the dining room so it needed to be on his head. That is what AV Therapy does to you - and it keeps us all marvellously entertained.