The three of us sat down for dinner a couple of hours ago (we still have a table and just enough crockery to perform this daring feat - nigh on everything else is already in Edinburgh). Nik and I were putting a few work issues to rest when Tom piped up.
'Hey - what are you two talking about?'
'We're talking about work sweetie'
'Well stop talking about that!'
'OK - so what do you want to talk about?'
A big smile broke across Tom's face
'I want to talk about cars! - Let's talk about the noise a big engine makes!'
Yay. It's the weekend. Down tools everyone.
Friday, June 27, 2008
Monday, June 23, 2008
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.
Monday, June 16, 2008
Father's Day
Father's day morning - I got up a few minutes ahead of Tom and was checking email when he emerged from his room.
A split second of confusion - he's not used to either of us beating him to be first up - before he said 'I will go back and get the card in just a second'... (he and Nik had stowed my Father's Day card under his pillow because, obviously, it would be much cuter for him to fetch it out himself and had nothing to do with avoiding being disturbed herself!).
I turned and said 'Go and have a wee-wee'
'I will' came the reply and off he went.
Tom is really comfortable without his 'ears' on first thing in the morning. I think he enjoys the cuddles without the paraphenalia (he uses the Advanced Bionics bodyworn with a single harness holding both processors) and his lipreading is pretty impressive when the context is limited and the routine so well established.
A cute moment to savour.
A split second of confusion - he's not used to either of us beating him to be first up - before he said 'I will go back and get the card in just a second'... (he and Nik had stowed my Father's Day card under his pillow because, obviously, it would be much cuter for him to fetch it out himself and had nothing to do with avoiding being disturbed herself!).
I turned and said 'Go and have a wee-wee'
'I will' came the reply and off he went.
Tom is really comfortable without his 'ears' on first thing in the morning. I think he enjoys the cuddles without the paraphenalia (he uses the Advanced Bionics bodyworn with a single harness holding both processors) and his lipreading is pretty impressive when the context is limited and the routine so well established.
A cute moment to savour.
Saturday, June 14, 2008
Sports Day
I must admit to not being fully prepared for Tom's Nursery Sports Day. It was only a matter of hours before its start that I even considered going but thank goodness I did. I could dress this post up in so many ways and the sports day would serve up the necessary material in spades.
Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:
These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.
The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.
Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.
I had time to enjoy that... seeing as Tom had creamed everyone in that race.
Did I say it wasn't competitive?
Please note the 'Tongue of Concentration'.
Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.
So thank you James Peacock School, Ruddington. We will miss you.
Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:
These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.
I had time to enjoy that... seeing as Tom had creamed everyone in that race.
Did I say it wasn't competitive?
Please note the 'Tongue of Concentration'.Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.
So thank you James Peacock School, Ruddington. We will miss you.
Wednesday, June 11, 2008
Hello again...
I've thought about posting so often over the last month but events have always moved on and the moment has been lost. There have been holidays and trips that I intended to share...
This one actually dates back to an Easter trip to Grandpa and Savta. Grandpa and Tom were bestest buddies for a week. Grandpa has 'holiday cars' - you can only begin to grasp just how exciting that is.
There has been another trip or two too - hasn't it been a long time? Or are we just having too many holidays?
Tom gave my mum a run out on the beaches of Normandy.
It hasn't all been excitement and play. Well actually, it just about has as far as Tom is concerned but there was one sad day in late April. My somewhat neglected but kind of loved car failed its annual MOT test in dramatic and expensive style. This photo is from the drawn out goodbye ceremony and endless run of 'last plays in daddy's car'.
He has since told everyone about how daddy's car went to the garage and didn't come back. I thought he might pine a little but he shows no outward signs of grief. I think his passion for 'the-car-that-flies' has seen him through. It's not as if the obsession needed any encouragement but Nik's aunt, uncle and cousin did it anyway and took us all to see the stage version which is currently touring the UK. Given Tom's tendency for role play and completion immersion in character, it won't surprise you to know that he went to the theatre dressed as Caractacus Potts.
He has told his teachers once or twice that that's his name.
So that's the story of the last month or so... one of car-obsessed, carbon-footprint creating travel and revelry. Tom has adapted to nursery extremely well and - whisper it - he already seems to be at a place where he doesn't need any additional support. That's not to say it isn't on offer or hovering in the wings but we've had the sort of conversation with educational professionals that starts 'I realise that I don't treat Tom any differently to any other child...' and 'I have never had a deaf child that I've thought could do this well...'.
Things are going well... so its time to shake things up.
We put our house up for sale in the same week that the run on Northern Rock began. Not the finest or most astute piece of timing but, hey, when you've gotta go...
Nine months and several price drops later it has sold and we're now a couple of weeks away from moving. Boxes are piling up, lists have been compiled and plans made. By the end of June we'll be living in Edinburgh and starting a whole new chapter. Tom's needs have been at the forefront of our minds throughout the process and, now I'm back in the blogwriting groove, I'll explain a little more.
Next time.
This one actually dates back to an Easter trip to Grandpa and Savta. Grandpa and Tom were bestest buddies for a week. Grandpa has 'holiday cars' - you can only begin to grasp just how exciting that is.There has been another trip or two too - hasn't it been a long time? Or are we just having too many holidays?
Tom gave my mum a run out on the beaches of Normandy.It hasn't all been excitement and play. Well actually, it just about has as far as Tom is concerned but there was one sad day in late April. My somewhat neglected but kind of loved car failed its annual MOT test in dramatic and expensive style. This photo is from the drawn out goodbye ceremony and endless run of 'last plays in daddy's car'.
He has since told everyone about how daddy's car went to the garage and didn't come back. I thought he might pine a little but he shows no outward signs of grief. I think his passion for 'the-car-that-flies' has seen him through. It's not as if the obsession needed any encouragement but Nik's aunt, uncle and cousin did it anyway and took us all to see the stage version which is currently touring the UK. Given Tom's tendency for role play and completion immersion in character, it won't surprise you to know that he went to the theatre dressed as Caractacus Potts.
He has told his teachers once or twice that that's his name.So that's the story of the last month or so... one of car-obsessed, carbon-footprint creating travel and revelry. Tom has adapted to nursery extremely well and - whisper it - he already seems to be at a place where he doesn't need any additional support. That's not to say it isn't on offer or hovering in the wings but we've had the sort of conversation with educational professionals that starts 'I realise that I don't treat Tom any differently to any other child...' and 'I have never had a deaf child that I've thought could do this well...'.
Things are going well... so its time to shake things up.
We put our house up for sale in the same week that the run on Northern Rock began. Not the finest or most astute piece of timing but, hey, when you've gotta go...
Nine months and several price drops later it has sold and we're now a couple of weeks away from moving. Boxes are piling up, lists have been compiled and plans made. By the end of June we'll be living in Edinburgh and starting a whole new chapter. Tom's needs have been at the forefront of our minds throughout the process and, now I'm back in the blogwriting groove, I'll explain a little more.
Next time.
Monday, May 12, 2008
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.
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.
Wednesday, April 23, 2008
Tom's next year
So it has now been two years since the rush to hospital, the diagnosis and the long wait. Time has done its healing and Tom has done some growing and recovering. He is in a wonderful place now.
A year ago I put together a montage of video clips and photos to show that progress and posted it here. There is now a sequel. It isn't quite as poignant a journey - its my opportunity to be super-indulgent dad.
So without further ado -
Tom's next year from Jason B on Vimeo.
A year ago I put together a montage of video clips and photos to show that progress and posted it here. There is now a sequel. It isn't quite as poignant a journey - its my opportunity to be super-indulgent dad.
So without further ado -
Tom's next year from Jason B on Vimeo.
Thursday, April 17, 2008
This new fangled blogging - tagging business
So Mom to Toes would like to know more about me and has 'tagged' the blog with this little questionnaire... well, I have a few minutes before himself emerges from his bedroom (maybe) so I'll have a stab. Given that its more about Tom than me, I'll answer it from his perspective.
A Blogger Tagging Game
1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.
I have to answer questions and people I tag have to answer the same questions, so here I go.
What was I doing 10 years ago:
Before I was a little boy, I was a baby. Then I was in mummy's tummy. Then I was a little boy and you were a little boy and you lived with Nanny and Papa and you played with me.
(Tom is not quite getting the 'not existing pre-birth' thing. He has also mistaken 'born' for 'bought' which is quite funny).
Me? 10 years ago I was a school teacher and still doing the job that I'm occasionally nostalgic about. It was '99 when the wheels came off.
Five Snacks I enjoy:
- Cake.... with icing. First I eat the icing then I leave a trail of the cake around so that daddy knows where I am
- Biscuits
- Chocolate
- Apples - really, I do
- Ice cream and I like to hold it until its running down my hand and possibly the walls too
and me? yeah, pretty much the same except faster and tidier
In the real world:
- Raisins and when you leave them in the sofa and on the windowsill they look like dead flies
- Fruit... lots and lots of fruit
- and cake
- and biscuits
- and sweets (trans. 'candy')
Things I would do if I were a billionaire:
Buy sweets. And cars. And biscuits. And treats. Lots and lots of treats.
I'm with him on the treat thing
Five jobs that I have had:
- My job is playing and when I'm pretending to be daddy its fixing.
- Pirate
- Scooby Doo
- Donkey
- Pingu
To fund these flights of fancy for Tom I'm a 'Usability Consultant' and if you know what that is, let me know because I'm not entirely sure.
Back in the day, I've been a farmhand, a school teacher and 'that web guy'.
Three of my habits:
- Asking 'why?' ALL THE LIVE LONG DAY
- Chitty Chitty Bang Bang
- Biscuits. Less habit, more 'addiction'
Me? Too busy to have habits.
Five place I have lived:
- The little house where I lived when I was a little baby
- This house
- Where we'll live if we ever sell...
Daddy lived all over the place (its an Armed Forces child thing thats turned into a 'can't make my mind up' thing)
Add one new part:
And this seems the most sensible new part...
What are the best pieces of advice you could offer parents of children newly diagnosed with a hearing loss:
1. Read a lot. Ask lots of questions of professionals and of other parents and then make decisions.
2. Do not let your child’s hearing loss define him/her.... or *you*. (Couldn't agree more with this one so I'm not going to change it).
And all the likely suspects are already tagged I think!
A Blogger Tagging Game
1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.
I have to answer questions and people I tag have to answer the same questions, so here I go.
What was I doing 10 years ago:
Before I was a little boy, I was a baby. Then I was in mummy's tummy. Then I was a little boy and you were a little boy and you lived with Nanny and Papa and you played with me.
(Tom is not quite getting the 'not existing pre-birth' thing. He has also mistaken 'born' for 'bought' which is quite funny).
Me? 10 years ago I was a school teacher and still doing the job that I'm occasionally nostalgic about. It was '99 when the wheels came off.
Five Snacks I enjoy:
- Cake.... with icing. First I eat the icing then I leave a trail of the cake around so that daddy knows where I am
- Biscuits
- Chocolate
- Apples - really, I do
- Ice cream and I like to hold it until its running down my hand and possibly the walls too
and me? yeah, pretty much the same except faster and tidier
In the real world:
- Raisins and when you leave them in the sofa and on the windowsill they look like dead flies
- Fruit... lots and lots of fruit
- and cake
- and biscuits
- and sweets (trans. 'candy')
Things I would do if I were a billionaire:
Buy sweets. And cars. And biscuits. And treats. Lots and lots of treats.
I'm with him on the treat thing
Five jobs that I have had:
- My job is playing and when I'm pretending to be daddy its fixing.
- Pirate
- Scooby Doo
- Donkey
- Pingu
To fund these flights of fancy for Tom I'm a 'Usability Consultant' and if you know what that is, let me know because I'm not entirely sure.
Back in the day, I've been a farmhand, a school teacher and 'that web guy'.
Three of my habits:
- Asking 'why?' ALL THE LIVE LONG DAY
- Chitty Chitty Bang Bang
- Biscuits. Less habit, more 'addiction'
Me? Too busy to have habits.
Five place I have lived:
- The little house where I lived when I was a little baby
- This house
- Where we'll live if we ever sell...
Daddy lived all over the place (its an Armed Forces child thing thats turned into a 'can't make my mind up' thing)
Add one new part:
And this seems the most sensible new part...
What are the best pieces of advice you could offer parents of children newly diagnosed with a hearing loss:
1. Read a lot. Ask lots of questions of professionals and of other parents and then make decisions.
2. Do not let your child’s hearing loss define him/her.... or *you*. (Couldn't agree more with this one so I'm not going to change it).
And all the likely suspects are already tagged I think!
Tuesday, April 15, 2008
A comedy master class
This evening - at the dinner table. Tom, not overly impressed with the meal presented to him, is playing around and resisting all attempts to persuade him to eat.
Nik is doing faux-grumpy... which may actually be edging into genuine frustration with his stalling tactics.
'Tom... you're making mummy cross now. Are you going to eat your dinner?'
'At school Joe eats outside... in the drain'
... mustn't look up... mustn't make eye contact...
'If you don't eat some more potato, there will be no pudding Tom...'
'Harrison... wears girl's shoes'
Must... resist.... must not laugh...
We eventually leave him to it and retire to the kitchen. I threaten to eat the jelly and Tom stuffs his mouth full of everything left on the plate and appears in the kitchen to recover his dessert - without his trousers.
He returns to the table, smiling. Plotting.
We wash up. I can hear the telltale beeping of disconnected implants.
Tom has strapped himself into his booster cushion. Naked.
'I've taken my clothes off!'
I give up and we guffaw the evening away.
Nik is doing faux-grumpy... which may actually be edging into genuine frustration with his stalling tactics.
'Tom... you're making mummy cross now. Are you going to eat your dinner?'
'At school Joe eats outside... in the drain'
... mustn't look up... mustn't make eye contact...
'If you don't eat some more potato, there will be no pudding Tom...'
'Harrison... wears girl's shoes'
Must... resist.... must not laugh...
We eventually leave him to it and retire to the kitchen. I threaten to eat the jelly and Tom stuffs his mouth full of everything left on the plate and appears in the kitchen to recover his dessert - without his trousers.
He returns to the table, smiling. Plotting.
We wash up. I can hear the telltale beeping of disconnected implants.
Tom has strapped himself into his booster cushion. Naked.
'I've taken my clothes off!'
I give up and we guffaw the evening away.
Monday, April 14, 2008
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!'
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!'
Thursday, March 27, 2008
My, hasn't he grown?
Tom had his hair cut just before we went away over Easter. The curls were running rampant, the knots were creating morning grooming 'issues' and frequent fringe trims were leaving the resultant mop in a state one might describe as 'mullety'.Cutting his hair aged him about 2 years in 10 swift-clipping minutes. Where did our baby go?
Wednesday, March 26, 2008
What is going on in that little head?
So we've been on a short holiday and Tom got to explore many aspects of French culture. Largely speaking, this involved gnawing on baguettes, pretending to drive 'holiday cars' (one of his grandfathers has so many cars that he leaves a few just for holidays) and befriending the local wildlife.
A day or so before we came home, we were wandering around a suitably picturesque Provencal village when Tom and Nik happened upon a cat who wasn't put off by his shrieking excitement and deigned to allow an approach. After a short bout of stroking, the cat nonchalantly departed but not before being declared a 'friend-a-ly cat'. By any measure it was a brief encounter. It provided a suitable opportunity for a little light language development and lessons about caution around animals but Tom was soon onto other exciting projects (including taking photographs - his choice of subject is quite eclectic - 'this dirt!', 'this road!', 'this car!!!') and the stroking fun was seemingly forgotten.
It hadn't gone far. The subject of the friend-a-ly cat was returned to in the car journey back to where we were staying. Yes, he was a very nice cat I agreed. I, too, liked him a lot. Then Tom's finely tuned sense of propriety and decorum kicked in.
We should invite the cat over for dinner.
Surely that would be a long walk, I argued. He doesn't know where we're staying.
This argument was roundly dismissed - his mummy and daddy could bring him in their car. Yes, he would like that a lot. We shall have the friend-a-ly cat for dinner.
I opted to play along. In retrospect this may have been my critical error but it was all in the name of fun language development and, well, we parents don't always know how it will pan out.
So when should we have called a halt? Before we laid a plate of rice at the table for the cat (Tom misheard me suggest 'mice' - or he just couldn't sanction such a ridiculous meal suggestion)? When I tried to use one of his soft toys as a 'pretend' friend-a-ly cat?
We had to start tea without the cat, oddly enough, although his tardiness did not go unnoticed. At some point I said to Tom 'we're only pretending aren't we?'. The tears welled up immediately and I could see Nik and her dad stifling those half-laughs/half-pouts of sympathy as Tom persisted with an increasingly tearful 'he is coming!'
'But sweetheart, cats can't talk... he can't tell his mummy and daddy where we live...'
'He can!' (thank you Pixar and Dreamworks for your witty and realistic personification)...
I tried in a similar, logical vein for a few minutes more. Tom bravely resisted reality. Then Nik came in.
'Ah, the cat has just phoned. He's sorry, but he really can't come. His mummy and daddy won't let him'.
And the crying stopped. Tom turned to me -
'He phoned me on his liccul phone', miming the cat reaching for a mobile on his belt.
The conversations with cats continue -
A day or so before we came home, we were wandering around a suitably picturesque Provencal village when Tom and Nik happened upon a cat who wasn't put off by his shrieking excitement and deigned to allow an approach. After a short bout of stroking, the cat nonchalantly departed but not before being declared a 'friend-a-ly cat'. By any measure it was a brief encounter. It provided a suitable opportunity for a little light language development and lessons about caution around animals but Tom was soon onto other exciting projects (including taking photographs - his choice of subject is quite eclectic - 'this dirt!', 'this road!', 'this car!!!') and the stroking fun was seemingly forgotten.
It hadn't gone far. The subject of the friend-a-ly cat was returned to in the car journey back to where we were staying. Yes, he was a very nice cat I agreed. I, too, liked him a lot. Then Tom's finely tuned sense of propriety and decorum kicked in.
We should invite the cat over for dinner.
Surely that would be a long walk, I argued. He doesn't know where we're staying.
This argument was roundly dismissed - his mummy and daddy could bring him in their car. Yes, he would like that a lot. We shall have the friend-a-ly cat for dinner.
I opted to play along. In retrospect this may have been my critical error but it was all in the name of fun language development and, well, we parents don't always know how it will pan out.
So when should we have called a halt? Before we laid a plate of rice at the table for the cat (Tom misheard me suggest 'mice' - or he just couldn't sanction such a ridiculous meal suggestion)? When I tried to use one of his soft toys as a 'pretend' friend-a-ly cat?
We had to start tea without the cat, oddly enough, although his tardiness did not go unnoticed. At some point I said to Tom 'we're only pretending aren't we?'. The tears welled up immediately and I could see Nik and her dad stifling those half-laughs/half-pouts of sympathy as Tom persisted with an increasingly tearful 'he is coming!'
'But sweetheart, cats can't talk... he can't tell his mummy and daddy where we live...'
'He can!' (thank you Pixar and Dreamworks for your witty and realistic personification)...
I tried in a similar, logical vein for a few minutes more. Tom bravely resisted reality. Then Nik came in.
'Ah, the cat has just phoned. He's sorry, but he really can't come. His mummy and daddy won't let him'.
And the crying stopped. Tom turned to me -
'He phoned me on his liccul phone', miming the cat reaching for a mobile on his belt.
The conversations with cats continue -
Tuesday, March 18, 2008
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:
If you are in any way involved, or interested, please consider responding to NICE through their website. They need telling.
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:
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?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.
If you are in any way involved, or interested, please consider responding to NICE through their website. They need telling.
Friday, March 14, 2008
The illness - what happened next...
Where did I leave you? Oh yes, with Tom running a temperature and us attempting to manage our tendency to expect the worst.
Well you'll be pleased to know that it all ended well. Tom got over his illness, life returned to some semblance of normality and we all caught flights to snowy Switzerland and a week's skiing.
This return to normality was not as straightforward as one might have hoped. It took us via a GP who wasn't taking any chances, a referral to A&E where we encountered an equally risk-averse SHO (and supervising Registrar) and an overnight stay for Tom and Nik in the all-too-familiar Queen's Medical Centre. That is one of the assorted legacies of a medical history that features a life-threatening illness and febrile convulsions.
One is not dismissed as an over-anxious parent. One is not dispatched with a slightly patronising suggestion to administer Calpol and leave it a day or two. Indeed, everyone is at great pains to reassure you that you've done the right thing and they would do the exact same.
As it was, it was just a temperature - Tom was bouncing around on his hospital bed the next morning in a manner that suggested he was well on the road to recovery. There had been no need to get that anxious. There had been no real need to instigate a chain of events that led to expensive rescheduling of flights and an uncomfortable, stressful sleepless night for Nik - one that, coincidentally, featured the UK's largest earthquake for many years.
An alarming, terror-inducing portent of something much worse... that passed very quickly and
is all but forgotten now.
The same goes for the earthquake.
So what will happen next time Tom gets a temperature? Will we cope a little better? I don't know. If anyone has any strategies we'd love to hear them.
One thing that reassures me is looking at pictures like this, taken a week after this little drama.
Well you'll be pleased to know that it all ended well. Tom got over his illness, life returned to some semblance of normality and we all caught flights to snowy Switzerland and a week's skiing.
This return to normality was not as straightforward as one might have hoped. It took us via a GP who wasn't taking any chances, a referral to A&E where we encountered an equally risk-averse SHO (and supervising Registrar) and an overnight stay for Tom and Nik in the all-too-familiar Queen's Medical Centre. That is one of the assorted legacies of a medical history that features a life-threatening illness and febrile convulsions.
One is not dismissed as an over-anxious parent. One is not dispatched with a slightly patronising suggestion to administer Calpol and leave it a day or two. Indeed, everyone is at great pains to reassure you that you've done the right thing and they would do the exact same.
As it was, it was just a temperature - Tom was bouncing around on his hospital bed the next morning in a manner that suggested he was well on the road to recovery. There had been no need to get that anxious. There had been no real need to instigate a chain of events that led to expensive rescheduling of flights and an uncomfortable, stressful sleepless night for Nik - one that, coincidentally, featured the UK's largest earthquake for many years.
An alarming, terror-inducing portent of something much worse... that passed very quickly and
is all but forgotten now.
The same goes for the earthquake.
So what will happen next time Tom gets a temperature? Will we cope a little better? I don't know. If anyone has any strategies we'd love to hear them.
One thing that reassures me is looking at pictures like this, taken a week after this little drama.
Monday, February 25, 2008
Can you be too careful?
Tom's sick.
His temperature started climbing a little yesterday after a few days of growing grumpiness. We initially put it down to the pre-school vaccination booster he had last week but, after a rough, sweaty night and a morning of lethargy, stroppiness and complaints of stomach pains, we called the GP.
All known logic told us that this was just a bit of a bug - Calpol and Nurofen brought the temperature down and perked the little guy up enough for him to complain about his cars not being parked JUST SO. We managed to keep his temperature down like that a couple of years ago too - look where that got us.
I kept reassuring Nik that it was nothing to fret about - I have fully adopted that gender stereotypical approach, seeking to pacify and play down at all times.
I did that one night a couple of years ago too.
In short, any parental instincts we had with regard to extent of illness or magnitude of emergency are pretty deeply undermined. It isn't as bad as it was but a slight temperature shouldn't leave one of you crying and the other scouring the internet for obscure diseases.
Perhaps there is some hope for us though. I haven't completely forgotten being a kid... and because I now need to be extra sure (and to reassure) I can't just let him lie back in front of the TV. I have begun to suspect that young Tom is not completely without guile. If he's being asked if something hurts, he will find a couple of imaginary grazes that require a plaster or prehaps the need for some restorative ice cream for internal aches and pains.
So we pitched his tent in the living room and sure enough, Tom had the energy to grab his sleeping bag, pack his rucksack with his torch and giraffe and make like a camper, all accompanied with his usual, excited running commentary. And there was a little relief from the anxiety and the past could be returned to its rightful place once more.
Tom's asleep now. He's running a little too warm still and I'm afraid Nik won't sleep well but he's going to be OK. Deep down somewhere, we think we know that.
Tuesday, January 29, 2008
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.
Tuesday, January 22, 2008
The unfortunate impact of 60s musicals
I mentioned the Chitty Chitty Bang Bang obsession didn't I? It has coincided with Tom's increasingly imaginative and witty approaches to acting out what he sees on DVDs and in books. This evening, the sophisticated routine he has created for the theme song - toy steering wheel on pushalong bike while driving in circles mouthing the lyrics - was preceded by a vibrant, energetic interpretation of Dick van Dyke's finest three minutes. Tom's performance was subtly enhanced by the fact that he performed the number dressed only in his vest, processor harness and Nicky's lilac beret.
Luckily for his future mental stability and dignity I did not have a video camera to hand at the time. It didn't take much to persuade him to perform an encore however...
The Old Bamboo from Jason B on Vimeo.
Friday, January 11, 2008
Weekend Movie Double Header!
Have I got a treat for you this weekend! Treat it as my humble attempt to make amends for the recent paucity of entries.
The first video is a 'little chat' I had with Tom the evening after his first session at nursery. I am competing for his attention with a pack of Snack-a-Jacks ('a sane snack in a mad world!' - no, really) and probably come off second best.
There's this whole discussion that comes up about having his photo taken at school. I think Tom has ignored the question and is making a slightly off the wall suggestion. It turns out he did have his picture taken at school...
Interview about nursery school from Jason B on Vimeo.
The second, and far more interesting, video is where Tom has taken control of the camera. I love his questions to me (is that how I sound? - the teacher from Peanuts sounds positively eloquent in comparison), his focus on his 'car' and his giggles. They get ya every time...
The birth of an auteur from Jason B on Vimeo.
The first video is a 'little chat' I had with Tom the evening after his first session at nursery. I am competing for his attention with a pack of Snack-a-Jacks ('a sane snack in a mad world!' - no, really) and probably come off second best.
There's this whole discussion that comes up about having his photo taken at school. I think Tom has ignored the question and is making a slightly off the wall suggestion. It turns out he did have his picture taken at school...
Interview about nursery school from Jason B on Vimeo.
The second, and far more interesting, video is where Tom has taken control of the camera. I love his questions to me (is that how I sound? - the teacher from Peanuts sounds positively eloquent in comparison), his focus on his 'car' and his giggles. They get ya every time...
The birth of an auteur from Jason B on Vimeo.
Thursday, January 03, 2008
A brief introduction to Christmas
This is Tom's brief Christmas interview. A few things to note that might help with understanding:
Tom explains Xmas from Jason B on Vimeo.
- We were at Granny's house
- Annabel had a metre-tall internally lit model Santa in her garden. We went to see it on Christmas Eve and I 'did' Santa's voice while Tom checked that he'd got his order right. I wasn't out of sight of and did nothing to hide my mouth... Tom seemed pretty convinced.
- Tom got lots of other things as well as the garage and the mini however he'd had to stop unwrapping pretty early in proceedings. He announced he had a tummy ache and went for a quiet story on his uncle's lap. It may have been the excitement. Then again, it might have been the heady cocktail of chocolate and sweets for breakfast.
Tom explains Xmas from Jason B on Vimeo.
Thursday, December 20, 2007
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.
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...?
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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. - 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.
- 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.
- 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. - Today, NICE published their Appraisal Consultation document - essentially their draft report.
They recommend, and I quote:
which - if I read it correctly, would give Tom simultaneous bilaterals on two out of the three counts.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).
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...?
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