Showing posts with label nhs. Show all posts
Showing posts with label nhs. Show all posts

Friday, January 30, 2009

About bloody time...

So - after over two years of deliberation and consultation the guidance is out - and the decision is a great one. All severe and profoundly deaf children in England and Wales are now eligible for bilateral implantation while adults with the same level of deafness are eligible for one (and a second in certain situations).

The legislation doesn't apply here in Scotland though (not unless you're post-meningitic that is) so there is a little more protesting to be done but it is a champagne decision.

Read more at 2ears2hear.

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.

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:

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.

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?

If you are in any way involved, or interested, please consider responding to NICE through their website. They need telling.

Thursday, October 11, 2007

National Healthcare (abridged)

There has been a soupcon of emotion around these parts over the last day or so, much of it stemming from an appointment we arranged for Tom yesterday. In the context of the appointment we didn't find out anything that we didn't suspect already but the act has been the equivalent of merrily flicking the scabs off a number of old emotional scars that Nik and I like to keep to hand.

The appointment was with a children's physiotherapist who specialises in assisting children who have suffered brain injury.

There's scab number one right there.

Ever since the darkest days were pushed behind us and we were no longer waking to find that Tom was still in a coma, the small matter of the lesions that revealed themselves on Tom's MRI ('felt to be secondary to meningitic end arteriolitis') had been placed carefully to one side. The horrific imaginings that we had tortured ourselves with following the ICU consultant's carefully worded explanation had simply not come true. Although profoundly deaf, Tom was unchanged in terms of intelligence, character and capacity to speak. Within a couple of months he was walking on his own again and nagging fears there were abated. He was the same boy.

But yesterday's appointment brought it all back. The physiotherapist's assessment was that yes, our friend Deborah was on the nose with her diagnosis and Tom has some core stability issues which he does his level best to accommodate and conceal. There is also a degree of hypotonia - or poor muscle tone - which wikipedia identifies as a possible outcome of meningitis, presumably because of damage to the area of the brain that coordinates skeletal muscle.

As I said above, this isn't really news although it does shed a different light on how we move forward. Up until now, as is obvious from this blog, the focus of our attention has been Tom's hearing and his learning to make the most of his cochlear implants. His progress with these has, and continues to be, outstanding. Now we must help Tom in whatever way we can with this challenge.

There is another old wound that has been opened by these events though... Linda, the physiotherapist who came and assessed Tom and is starting to work with us on exercises and games to help him? She's a private physiotherapist.

Tom made two outpatient visits to the children's centre for physio before he was discharged over a year ago. He had only been walking again for a couple of months and was much more unsteady than he is now. Yesterday we discussed the prospect of getting Tom re-referred in the light of her assessment but Linda, a former NHS physio herself, suggested it would be pretty unlikely that he would be regarded as a priority and seen any time soon.

Well that felt good and left us in good cheer...

I must state again that we are eternally grateful that we still have our son. To the doctors in A&E who quickly diagnosed the meningitis that our GP had missed, we thank you. The doctors, nurses, OTs and physios who cared for Tom (and us) through that three week period - you are all wonderful, dedicated people who gave our son exemplary care and started him on his road to recovery.

The cochlear implant team at Nottingham had Tom on the operating table within 8 weeks of losing his hearing and switched on in twelve - incredible work that set up the success story that is our son's language development since.

But it is beyond this acute phase of Tom's treatment that the cracks show and the hurt begins.

I used to be a big fan of the movie and TV series M*A*S*H. Beyond the political references and marvellous satire, the depiction of doctors doing heroic patch-up work as rapidly as they can has stuck with me and is brought to mind now. Whether it be the budgetary constraints, competence or lack of will, there seems to be a point where a patient is considered 'patched up' and 'well enough' to be dispatched back to the trenches. Presumably the necessary target has been met and that patient adds no more value to the hospital or PCT's ratings. Whatever the reason, it is too soon.

Tom was considered 'well enough' with one implant and 'well enough' with a degree of hypotonia but is he? It is patently obvious that more could be done as we have found. Through the generosity of a charity, family and friends (and the fact that we have good jobs) we have been able to do more - to continue Tom's recovery.

And the main reason? Because we've got enough money (just).

Enough to pay for a second implant, enough to pay for Auditory Verbal therapy and now we will find enough to pay for private physio.

This isn't a case of parents making exaggerated requests for superfluous treatments because they regard their child is special in some way - these are obvious needs identified by respected professionals... and turned down by others.

I don't have an answer for this... I recognise that the vast majority of health professionals we have been in contact with would have loved to carry on Tom's treatment but thinly spread resources just won't stretch. What I hate though, is the inherent waste, the failure of processes, the inconsistency of provision and the deceit.

Something has to change because this isn't quite right.

Tuesday, April 24, 2007

Bilaterals in the News

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

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

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

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

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


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

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

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

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

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

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

Rant over.

Tom media watch

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

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

Monday, April 09, 2007

Easter - the aftermath

The washing machine is grinding to a halt after its fourth run of the day; the toy Dyson lies where it was abandoned on the rug; a rapidly deflating McDonalds balloon bumps limply across the floor at the slightest breeze and Tom, not before time, sleeps soundly in 'the racing car bed'. The house is quiet and the Easter Holiday weekend is at an end. The tornado that is the Family Smith has passed on and we can rest again.

I make it sound more dramatic than it was; these old university friends of mine and their three delightful children were no different to any family of five wired on a heady cocktail of Fanta and their youngest's body weight in chocolate. And Tom adored them. He followed the older ones round, he directed questions to them and understood what they said back. Tom laughed with Ellis and Rhianna and, as part of a joint project with the latter that will be worth a couple of credits in delinquent school, coated much of the shed in chalk. He chased and was pursued; he tickled and guffawed and generally had a ball.

And so did we.

The weekend was exceptional merely in its ordinariness, the sort of weekend families have together, and it couldn't have come at a better time for us. So, in the style of all the therapy sessions we subject Tom and ourselves to, here are our 'take home messages' from the weekend.

  1. The house of the Golden Arches is a perfectly acceptable, nay ideal, restaurant of choice for an Easter Sunday lunch with four under-10s.
  2. An hour-and-a-half long bedtime tantrum is par for the course and not, as nagging voices in the backs of minds will have it, in any way exacerbated by Tom's deafness. It's exacerbated by chocolate.
  3. Staying off the topic of work isn't always the best course of action on holiday weekends, particularly not when one of said friends is an Occupational Therapist who, in a few short minutes, came up with some excellent suggestions for helping Tom with his still-slightly-suspect balance. Tom was discharged with unseemly haste from the out-patient physiotherapy and while I don't doubt there are far more needy cases in their long, long waiting list, this experience sits in the 'not good' half of our NHS experiences pros and cons list.
So there you go Smiths - there's your mention. You are deserving of so much more though - this weekend has been a much needed shot in the arm for us all. Thanks.

Wednesday, March 28, 2007

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.

Wednesday, January 03, 2007

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

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

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

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

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

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

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

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

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

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

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

We were sent home.

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

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