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...?

Eat yer greens!

This one is for Heather.. .although I expect some interest from the Broccoli Marketing Board.

We take vegetable eating very seriously in this house...

All I want for Christmas is... Cheese.

'What do you want for Christmas Tom?'

'a garageandamini'

The desire is firmly engrained - he shows no sign of wavering and besides, the letter's in the post already.

Tom also has an advent calendar. It's pretty fancy as it was fashioned by his Granny, blessed as she is with a surfeit of embroidery skills. It has 24 rings to which are attached presents for every day of advent. It was in action last year too (and the year before come to that) and Tom certainly remembered its function when it made its appearance at the start of the month.

The routine was quickly established - down in the morning and straight into the present of the day. after a couple of early negotiation attempts, Tom has grudgingly accepted the formula:

'I want to open another one!'

'No it's one present every day'

'No its two every day!!!'

Nooo - just one...'

etc.

He's a pretty good kid and hasn't given in to the temptation. This maybe because, two weeks in, he's learned that quantity doesn't equate to quality and, quite frankly, waiting until the morning for 3 jellybabies or a small toy is no great hardship.

On a number of evenings he has shown great interest in the present at the bottom of the calendar - the one that awaits on Christmas Eve. Tonight, apropos apparently nothing, Tom informed me it was Christmas Eve. Strong assertions of this type are pretty common at the moment and he wasn't to be dissuaded.

'It will be soon... not tonight though...'

'It is!! It is Christmas Eve!'

He then went over to the bottom gift and gave it a little squeeze, his curiosity rising to the surface again.

'It's quite hard... It's cheese!!', clearly quite excited at the prospect.

'Can I taste it!!'

Have we managed to lower his expectations that much? Maybe he'll actually be disappointed when he unwraps the wooden box of animal dominoes...

I'll let you know.

Language for all occasions

After dinner last night Tom started experimenting with coil removal. At first he was taking just one off.

'Can you still here me Tom?'

'I can hear you a little bit...'

Once he's got our interest they both come off and, after some pretty impressive lip reading and they coils are restored to his head I ask

'Why did you take them both off?'

'Cos I'm crackers!'

His mummy has been teaching him some useful language.

Big Days

I think I'm a blog refuser. It got to the point where, just like with thank you notes after Christmas, it had been so long that it was almost ruder to post than not. For any of you who haven't become disenchanted with the lack of action in these parts, thank-you for hanging in there. I got caught up with the day job... still am in fact but I'm experimenting with multi-tasking. Not sure if I'm going to be any good at it but I'll give it a shot.

The big event of the weekend, in the star-struck eyes of Tom in particular, was the all-to-brief visitation of 'Uncle Bungle Dave'. Nik's brother has near-mythical status, enhanced by long distance and, ever-so-slightly-enviously, rarity value. Here are a few key indicators of the extent of the affection, through the mouth of the little one...

'Uncle Bungle's Train!!! Uncle Bungle's Train!!!... Hide!! Hide!!'

'Dave is a funny man!! Dave is a funny man!!'

'I want to wee with Dave.. I have to' (there follows 5-minute meltdown until Dave concedes and 'pretends')

'Who's reading your story tonight?' 'Dave!! Not Daddy (a little too emphatically)'

'Can Dave sleep with me tonight?'

You have to rely on your inner strength when you're a daddy don't you? I thought I could expect a longer period of grace as the unassailable favourite but my stock has fallen.

So soon, so soon.