Last man standing

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

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

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

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

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

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

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

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

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

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

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

Do you know where they are...?

World of Sound

A new UK site championing cochlear implants has appeared.

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

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

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

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

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

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

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

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

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

The decision that never was

I was early to my desk yesterday morning, fingers hovering over the keyboard ready to pound out a fuming diatribe about the Healthcare Commission, PCTs and all the usual Dark Forces that are lined up against us. I made a few false starts... a few sentences about a phone call that told me little that I hadn't already suspected... but I kept deleting them. I just wasn't angry enough. I'd prepared myself too well for the expected disappointment.

As it was the phone call didn't even bring the anticipated rejection; it was actually to tell us that the review proper was just about to start and that what was being examined was the process rather than the decision - which I kinda knew. That the process involved flawed thinking, erroneous interpretation of data, ignorance of the facts and dismissal of expert opinion is, I would hope, where there is thin glimmer of hope. I suspect, however, that the PCT are going to get marks for effort - they did try to think, after all... and they collected some data and expert opinion which, although the interpretation flew in the face of national trends, accumulating evidence (check out PubMed folks) and said opinion was still, erm, done.

So I didn't get round to this post yesterday. Just as I was building up a head of steam a sleepy smiling face appeared in a bedroom doorway and I got distracted. A few cuddles cheered me up, as did Tom's running commentary that flowed uninterrupted through getting dressed, washed and out of the house.

It still sucks that our PCT is broke. It still sucks that we have to be among the few pioneers who discover all the bizarre quirks that accompany life as a part-NHS, part privately funded implant family. What doesn't suck at all is the jabbering fruit loop that is Tom.

At a slight tangent - but this is where my thoughts led so let's go with it - the whole jabbering offspring thing made me think of Schuyler and her Monster. Rob relays his morning's TV viewing when he heard a mother complaining about a child reading and talking too much... you can't make it up. Perspective is an interesting thing - particularly when kids are involved.

Waiting Again.

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

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

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

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

Just when you thought you'd got enough appointments

Months before he got ill with the meningitis that left him deaf, we had already had cause to introduce Tom to the Eye and Ear, Nose and Throat department of Nottingham's QMC. The slight squint that we'd noticed when he got tired or was concentrating led us to get his eyes tested. The latest follow up appointment was today - drawing us back to the way-too-familiar hospital where we have spent just a little too much time this year.

We're getting better at it; better at compartmentalizing and rationalizing, dealing with the here and now rather than the darker then. True, the stomach still knots when we drive under the ringroad and approach the building but, as we steer past A&E, Tom's excited shouts of 'tunnel, tunnel!' help lift our mood.

Appointments of this type with small children rely so much on the experience, skill and speed of the practitioner. I don't want to explain any more why Tom's excessively hesitant around people with gadgets who want to touch his head; you've got the big file - work it out. Today we experienced both good and bad - pretty much par for our course. The big leap forward was Tom's acceptance of the partially blacked out glasses. This was followed by a less-than-successful attempt to diagnose the prescription required. We're not patient parents in these circumstances any more. Tell us what you need and we will do our level best to get Tom to comply - hovering in the background while our son gets increasingly hysterical does not help.

The upshot is that Tom is long-sighted; the squint is his brain's way of trying to bring the world into focus and it does it pretty successfully although a bit of help won't go amiss and may even correct it. So we've come away with a glasses prescription and more wonderful opportunities to make frequent trips to the hospital.

Media Star - again

Via this blog the Nottingham Evening Post learnt of Tom's switch on last week and were keen to run a follow-up story. You can read it at 'Let's Hear it For Tom and Gang'. The paper version took up all of page three and included a large, and very cute, photo of Tom cupping his ears. I'm going to have to see if I can get a print of it.

Being of a slightly disgruntled nature these days, I am not entirely happy with the ending. Don't get me wrong - its a very positive story that shows how grateful we are to all the people who've supported us but the note it ends on, a repetition of the PCT's policy reasoning, left a sour taste. I've given my two penn'oth in Further Media Experiences but a right to reply in print would have been nice.

Appeal Process Update

We've had notification that the Healthcare Commission have completed their initial investigation and are proceeding with a full review of the case. Watch this space - for some months probably as there's a bit of a queue. Understaffed or are we a dissatisfied nation when it comes to the Health Service? Don't answer that.

Tom's Cuteness Check

I've just popped in to spy on him sleeping and you can all rest assured - he's still as cute as ever. Besides still obsessing about 'Airplanes', Tom is currently making us giggle by mimicking a phrase picked up at AV UK. To help with getting Tom to understand what's happening next and do things he didn't necessarily enjoy we taught him 'First... we'll do this... Then.. we'll do the thing you like'. No sooner is 'First...' out of our mouths then Tom is already replying 'Theeeenn...' as if to hurry us on to the important stuff - while perfectly mimicking our tone.

The State of the State

I haven't touched on it for a while - and haven't thought about it much either - but our appeal against the PCT's decision is making its slow progress through the system. It now lies with the Healthcare Commission; another large faceless bureaucracy from whom I anticipate a few pleasantries and at least one sentence beginning with the words 'I regret to...'.

The Commission cannot promise rapid action; investigations take time and they have already exceeded their target of 20 working days to complete the initial review by some margin (they received our form some time mid-August). I received an email yesterday which suggested its going to be at least another couple of weeks before we hear anything. The decision to push on and get Tom implanted is fairly well vindicated don't you think?

Largely speaking, I'm fairly calm when thinking about such matters these days. There are occasions when the inadequacies and failings of the system pierce my bubble of zen-like peace but thankfully, for the sake of my sanity, they are relatively infrequent now.

I had a moment yesterday when the Department of Work and Pensions decided Tom didn't qualify for a Disability Living Allowance. More precisely (I suspect) we didn't use the appropriate trigger words in the impressively long application form that would have convinced them of his needs.

So there's another appeal process to start. I had no idea how much paperwork and hassle was involved in trying to get the appropriate care and making claims. Is it this way to put off the chancers and the scroungers? Surely they're the only ones with the stamina to see it through.