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.
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.