Pneumococcal Vaccine and another campaigning moment

We appeared in our local newspaper again yesterday. I'd written a stroppy letter to the editor following an earlier story and the Health Editor, Clare Boyd, had got back to me. She was keen to get the story straight but needed a new angle (that hackneyed 'Nasty PCT won't pay/postcode lottery thing wasn't going to make the cut again).

This led to 'Don't Gamble with this awful illness' - a full page story in the paper edition, complete with sidebar listing the symptoms and a large photo of Family Broekhuizen playing with the ubiquitous toy train. The story ties in with the launch on Monday of the Pneumococcal vaccine as part of the Vaccination Schedule for under-twos. Dad Jason Broekhuizen (36) comes over as a bit of a know-it-all but his heart is in the right place.

You don't want this illness happening to your kids, believe me.

Thinking about the couples with children I know, all of them have one parent who tends towards the 'it won't happen to us - look at the odds' when it comes to the category of experiences I will refer to obliquely as 'Bad Things'. I was that parent; I always thought that the balance my rationalised optimism provided to Nik's intuitive caution meant that, through the continual series of compromises and trade-offs that formulated our combined parenting approach, Tom would come out balanced and OK. Other children wouldn't have to be scrubbed and sprayed with DDT before being allowed in the house and we wouldn't let him juggle with scissors and bread knives until he was old enough to mop up the blood himself. So we went on until our luck ran out and were reminded that, just because there were long odds against something, it can still happen.

To finish up this broadcast promoting Pneumococcal Vaccine, I'll leave you with a quote from BBC Wales (and anyone else who's running a similar story this week)

Chief Medical Officer for Wales Dr Tony Jewell said: "We have already seen the immense impact this programme has had in the US. Since its introduction, infections in young children caused by the strains in the vaccine have fallen by 94%.

Moving On

As the Bard wrote:

Things without remedy, should be without regard; what is done, is done.

'Letting sleeping dogs lie', 'Not crying over spilt milk' and other such metaphors seem to be a recurrent theme at the moment. Nik and I have had a host of experiences and emotions that we've been encouraged to bundle up, stow away and move on from over the past few months. We are even inclined to gently present such suggestions to each other at times of stress. The stock response, spoken out loud or otherwise, is 'I know, I know but...'.

The biggie, of course, is Tom's meningitis and, more specifically, the two days he was ill prior to us getting him to A & E. That short time period, which Nik and I can recall with unwanted clarity, is ripe for dissection and initiates sessions of self-flagellation and tear-sodden recollection. We just weren't aware enough. The early symptoms of meningitis are so much like a host of other, less serious infections; most of which lie in the 'Doctor thinks I'm an over-protective parent' zone. The more commonly known rashes, stiff neck and aversion to light don't always appear in babies and young children and, if they do, may appear later in the illness when the prognosis is so much worse.

Parents, for your families sake, commit the symptoms to memory , trust your instincts and don't allow your fears to be played down by anyone.

Better still, take advantage of the (British) Government's belated inclusion of the pneumococcal vaccine in the new children's vaccination schedule from the 4th September. This vaccine has been available for six years in the USA and organisations such as the Meningitis Trust have been lobbying for its introduction here for some time. Why so long? Presumably the equation of number of deaths and permanent disabilities versus cost finally tipped the right way. Only now do 500 cases of pneumococcal infection and 50 deaths a year in the under two's cut it.

Just be thankful it doesn't depend on where you live too.

See, I told you I was moving on.

Wind the Bobbin Up

We walked back from the shops this weekend, buggy laden with everything bar the child it was designed for. He was busy running his hand over all the brickwork and other surfaces that lined the pavement
‘Bwick’
‘Edge’
‘Gate’
‘Door’
It was not a quick journey.

Part way home, Tom shifted verbal tack; he stopped babbling about what he was touching and started babbling about something else. It took a few moments to catch on (we’re not as quick at getting into his ‘thought bubble’ as Jacqueline would like – this is because Tom’s bubble is somewhat irregularly shaped and he seems prone to wild leaps of association) and then noticed the odd ‘clap clap clap’ punctuating his monologue.

Tom was singing to himself – ‘Wind the Bobbin Up’ is something of a Granny’s favourite, complete with actions – a habit he unsurprisingly lost touch with between meningitis and implant.

The devastation that you feel when grieving or experiencing tragedy has a painful and complex texture. There is the smothering, non-specific heaviness that blankets the everyday; the chinks of light that fall through flaws in the weave and offer a glimpse of what came before and what can only be hoped is ahead, and then there are the scratching, stabbing threads that remind of what has been taken away and, for me, are the hardest to bear.

The absence of Tom’s spontaneous bursts of confused song chafed until I wept. He had perfected ‘Baa baa, little star, ee-aye, ee-aye oooh’, seeing nothing wrong in segueing his favourite bits from several songs into a glorious remix. I missed that song so much. I would hear it through the baby monitor as he fell asleep, a gentle indicator that he was happy with his lot and was slipping into an easy, contented slumber.

And now he’s at it again. A (rare) quiet moment on a car journey may be punctuated by a ‘Rock, rock…’ (Tom’s instruction to sing ‘Row, row, row the boat’ – the verse with the crocodile is his favourite) and he’ll have a stab at the theme tunes to ‘Bob the Builder’ and ‘Postman Pat’. As tuneless as his parents but it matters not a jot – it makes us all stupidly, disproportionately happy.

So we joined in with Tom and treated Ruddington to a verse or two of

‘Wind the bobbin up,
wind the bobbin up,
pull, pull
clap clap clap’

The Broekhuizen Family Singers won’t be appearing near you any time soon but, if you happen down our street, we do requests.

Further Media Experiences

Until next Wednesday morning, you can listen to the dulcit tones of Karl Cooper, BBC Radio Nottingham's Breakfast Show Presenter, interviewing me on the BBC's radio player.

Select 'Listen Again' under the BBC Radio Nottingham header on http://www.bbc.co.uk/nottingham/ .

I've decided not to listen again myself for fear of dissecting myself out of existence. I'm sure the media-savvy amongst you will tell me where I went wrong - I think it comes down to the fact that I'm too bloody nice and somehow believe that if you explain everything, people will come round to your way of thinking. I answered the questions rather than making the points that needed to be made.

Rushcliffe PCT's statement contained the following:

Rushcliffe Primary Care Trust said it does not pay for bilateral implants as
the evidence for them is not strong.
In a statement, a spokesman added: "It
is essential that as many children as possible benefit from a unilateral implant
rather than fewer children receiving bilateral implants."

So here, belatedly, are the points I should've made instead of answering the questions I was asked:

• The PCT thinks there's too little evidence. This is an untenable position - all the papers being published and presented point to the astonishing success of bilateral implantation. If a hard-nosed US insurer such as Anthem/BCBS can be persuaded - this is their new policy on cochlear implants - then why are Rushcliffe PCT taking this stance?
• Unilateral implants are given to all patients who meet the criteria - that's the policy. Giving a child bilateral implants due to exceptional circumstances does not alter those criteria and, therefore, does not deny a child an implant. To present it in such a way is designed to make us look greedy.

I'm too well brought up. That must be it.

There then followed the piece in the Nottingham Evening Post. To save you the trouble of following the link for so short an article, I'll save you the trouble and republish it in its entirety.

CASH APPEAL FOR BOY'S OP
12:00 - 16 August 2006
The parents of a two-year-old boy are trying to raise £20,000 so he can have a vital hearing implant.

Jason and Nicky Broekhuizen, of Ruddington, say they need to raise the
cash quickly to prevent their son Thomas from going deaf.

His hearing went after he suffered meningitis four months ago.He had an implant in his right ear but his dad Jason says he needs a second implant in the other one.

Staggered.

For the record, we are not appealing for money; no such suggestion was made to the reporter. What was mentioned was all the key issues that I've become distinctly boring about on this blog.
And how can a sub-editor let through one inaccurate statement - '...need to raise the cash quickly to prevent their son going deaf' that is followed closely on the heels by the stunningly contradictory 'His hearing went after he suffered meningitis...'?

The machinations of the media remain a foreign world to me. The pieces on TV and Radio were intelligent and sympathetic; clearly the Evening Post didn't see this selling papers. Is it as simple as the fact that they were last to the table and so need to find a new hook?

In Other News...

Tom is still beautiful.

He now regards the illustrious audiological double act that is Kim and Mark as an entertaining diversion, what with their endless supply of cars and dancing cows. The mapping on his implant processor has been tinkered with after a month of activity to give Tom access to a greater range of decibels; as they cranked up the level he barely flickered an eyelid, soaking up the higher volumes with apparent ease.

To paraphrase the great Noddy Holder - 'Cum on Feel the Noize'

Tom's BBC moment

You know how it works - your Dad talks to a fellow churchgoer about his grandson's ongoing travails (PCT with shallow pockets, unruly bone growth in his ears, that sort of stuff) and it turns out that her husband is a reporter for the local BBC TV region. Phone numbers are exchanged and before you know it Tom is being shown how a big TV camera works while Nicky and I are being interviewed by Quentin Rayner (mention of whom to my mother and sister led to a conversation of a 'ooh, what's he like in real life? He's good he is' nature).

East Midlands Today regarded the story as important enough to lead with on their evening news yesterday, August 15th. The piece was fair; we were able to make some of the key points and Sue Archbold of the Ear Foundation drew attention to the iniquities that exist in bilateral provision across the country and further afield, and to the growing body of evidence supporting bilaterals.

Sadly, these points don't come across as strongly in the more permanent BBC website news article .

Given Tom's excessive cuteness (or the dearth of other news), it's hardly surprising that the media coverage has spun on from this TV item. As I write this its not yet 8.30 in the morning and we've had a family outing to BBC Radio Nottingham for a quick chat with Karl Cooper ('You're meeting Karl Cooper? Wow! Finally my eight year old nephew is impressed), host of the morning news show. Within five minutes of getting back a journalist from the Nottingham Evening Post appeared at the door - and getting lucky with our doorbell which only fulfils its job description intermittently.

So what will all this amount to? Given our recent experience with the PCT, I don't hold out much hope for a complete volte-face but if the iniquities in funding approaches across the country are held up for examination and the right people become more aware of the complex issues surrounding bilateral implantation then that can only be a good thing.

Alongside that, of course, is the self-examination and the nagging feeling that you didn't get all the points across with the time slots being so squeezed and the medical stuff so easily over-complicated.

Still, Tom certainly likes seeing himself on TV.

'Tom's choo-choo! Mummy! Daddy! The Man!'

Tom at Two

In this picture Tom is modelling the Advanced Bionics 'Clarion' device and a natty haircut courtesy of 'The Ruddy Chop', our marvellously monikered local barbers. The answer to the joke 'How many people does it take to cut Tom's hair' is four; two to hold him down, one to distract with blocks and one to perform 'guerilla hairdressing' - dive in, grab a lock and snip before the subject notices.

Two and Loving It

Tom is two now and his implant has been switched on for four weeks.

When Nicky shouts 'Jay!' up the stairs she has an echo. 'Ay!!!' yells Tom, just to make sure I've heard.

As he climbs up into his high chair or clambers down a step backwards, Tom says 'Care-ful', mimicking our cautious tone perfectly.

Tom's birthday party had something of an animal theme and since then he spots, and names, giraffes, elephants, lions, monkeys and zebras with glee. His monkey impression is something to behold and will get him out of scrapes for some time to come.

Target words for this week: 'Cement mixer', 'Dump truck' and 'Road roller'. I've not set myself much of a challenge there due to their proliferation in our house and the boy's singular obsession with all things wheeled.

The Flip Side

Tom is making this progress because of a number of key factors; all mentioned elsewhere in this blog and all worth reiterating.

• We are following the Auditory Verbal therapy path with the marvellous Jacqueline Stokes.
• Tom had, when he was deafened, a pretty good vocabulary for a 20 month old and his auditory memory was developed/strong/retentive enough to cling on to 130 words plus throughout his 'silent period' which was a mercifully short three months
• Tom is learning his language in the optimally quiet environment of home with two dedicated and slightly obsessive teachers.
• He's only two and his brain is still very plastic and able to cope with change
• Nottingham know what they're doing when it comes to mapping

With all this progress being made why do we continue to fight out PCT for funding?

• Because as soon as there's poor acoustics or any background noise, Tom doesn't hear a word
• Because Tom has to look all over the place to find out who's speaking
• Because the meningitis took away the hearing in two ears, not just one
• Because there have been a number of signs that ossification has begun and we've heard of a number of cases where the effectiveness of the implanted ear has declined with progressing ossification. The thought of Tom being plunged back into silence is too awful to contemplate for long.
• Because our PCT are out of step with the rest of the world - one of the biggest US insurers, BlueCross BlueShield policy now includes bilateral implantation, following on from recent developments as reported in the Times and A Tale of Two PCTs

Feel free to add to this list - I need to go and play with my son and not dwell on this too long. I can do without an ulcer just now.

Tom's Second Birthday

Over the past few months today has been a significant point of reference for me - a date in the near future to 'get to', to make the most of when, and if, we made it. It held dramatic connotations as landmark dates in the calendar do - as markers for progress or survival.

Our neighbours have a boy the same age as Tom. That isn't a rough approximation; the difference in age is one short night that Nicky had on the maternity ward before Linda was wheeled in to the opposite bed with baby Joe; future boy next door. One can probably imagine with little difficulty how significant our relative positions felt while Tom was ill; how painful the prospect of returning to our joined houses without him. Linda and Mark, and Joe in his busy toddler way, have been vital to our recovery in the way that empathetic friends can be.

In the dark days, when the extent of Tom's potential recovery was by no means certain, Mark talked about the boys playing together again.

'August', he announced. 'They'll be running round the garden together in time for their birthdays'.

It sounded optimistic and I was far from convinced given that, at the time, he could barely move one of his arms and couldn't yet support his head.

As it was, the gallivanting and frolicking in the garden got started in July. Although somewhat cautiously on Tom's part (he is still very uncomfortable on uneven ground and won't tackle inclines without dropping to his knees), Mark's prediction came true.

Yesterday was Tom's party. His 'wellness' is slowly losing its novelty and the level of his grandparents indulgence can almost be explained as normal. He needs a little in the way of extra attention, what with that pesky coil needing to be replaced with irritating frequency but there are a number of practised hands ready to help. Joe, obviously, doesn't go in for offering special consideration. For him Tom is that kid next door who gets all the cool stuff the day before he gets his share and he has to witness it with unreserved envy. That, for now, is fine; Tom can't possibly hang on to all the trains, diggers and Bob the Builder-oriented goodies at once and there's enough of a toy overspill to share.

An uplifting day. PCTs, second implants and therapies of one kind and another can all be put to one side for a day or two. I think we all deserve that break.

A Tale of Two PCTs

Yesterday (2nd August) this appeared in the Times:

Deaf toddler's parents win NHS battle
Hospital trust refused to pay for boy to have implants in both ears, then
relented after pressure
THE parents of a toddler who has become deaf in both ears were told by NHS
bosses that he could have the hearing restored in one ear, but not in both.
However, after The Times asked North Dorset Primary Care Trust (PCT) to
justify the decision, it relented and agreed to operate on both ears. The trust
denied that the call from The Times had any influence on the decision, which it
says it had been considering carefully for some time.

Later the same day we received a letter from our PCT informing us they were 'not willing to provide funding for a second cochlear implant for Tom'.

We had gone into the Appeal Panel meeting on Tuesday afternoon desperately trying to be hopeful of a positive outcome. We had opted to present our case in person rather than submit a written appeal - having felt the level of helplessness that comes with sitting by a comatose child's bed, the more involved in the process we were the better, however painful it may prove to be.

We practised and honed the presentation, covering what we regarded as all the salient points:

• the research on bilateral implants published thus far
• ongoing research reported at International Conferences,
• pertinent research regarding deafness and education, mental health and work
• the international perspective
• exceptional circumstances relating to Tom (bearing in mind he is post-meningitic, under two and had language prior to his deafness)
• testimony from bilaterally implanted children and their parents

We delivered it with the level of competence you'd hope for from an ex-teacher and a project manager. We even managed to control the waver in our voices when we touched on the more personal, emotive issues.

And, quite frankly, the whole effort was futile.

My dad, who came to drive the keyboard and whose support has been immeasurable throughout, came away thinking we had hope. I had to admire his optimism in the face of such evidence to the contrary. What I assumed, quite wrongly, to be a question and answer session to clarify our case was, in reality, an extended explanation of why they were going to turn us down. My feeling is that the panel had, to varying degrees, made up their minds long before we appeared.

PCTs can't have a blanket policy - there has to be wriggle room where 'exceptional circumstances' allow for independent decisions. Well, there has to be the appearance of it anyway; the pot is only so big as we were told in ever more imaginative ways ('we're not dumb, we understand!!' I wanted to shout) 'you know those other PCTs/countries who believe the research and stuff, well they've got more than we have...'

I tried to explain that, as much as we'd like to, we didn't have the time or the money to move to Scotland, Camden, Barnet, Norway, Iceland, Spain, Austria, Germany....or possibly North Dorset.

They may have smiled ruefully; I don't know, I was on my way out of the door.