1. Background: In Durban I wasn't born deaf. As a 30 year old adult, I started going nerve deaf in Durban, after working on noisy onion packing machinery at Kibbutz Grofit, Israel in early 1982. In Dec 1982, the loud noise of my shooting a run over dog in Durban aggravated my nerve deafness. In 1983 I taught biology & was boss of the general science department at Glenwood Boys HS, Durban, where I started going deaf. I battled to hear boys' questions, had vertigo & loud noises were painful. Intermittently, I had good hearing days & deaf days, sometimes lasting weeks or months, then a series of good hearing weeks or months.
My nerve deafness worsened over the next decade, while I continued teaching at Durban, Kleinzee, QwaQwa & East London & doing a 3 year stint of DeBeers personnel work at Kleinzee & Koffiefontein mines. With my vertigo I started having intermittent blackouts & ocular migraines with scintillating scotomas in both eyes. In desperation I saw doctors, ENT specialists & audiologists in Durban, Kleinzee, Bloemfontein, Port Elizabeth, East London. They all made megabucks out of my deafness, examining me & telling me my deafness was worsening & I must buy expensive hearing aids. I bought my first analogue hearing aid in Bloemfontein in 1987. I found analogue hearing aids painful & useless.
My last 6 teaching years were at Selborne College, East London, where my deafness worsened. 1994, my last teaching year, I couldn't hear a thing. I bluffed my way through teaching, lip reading & persevering with my useless analogue hearing aid. 1993, from East London I applied for NZ residence. My deafness was passed in my medical by NZ Immigration Service.
Before emigrating from East London, South Africa to NZ, I bought expensive Starkey in-the-ear, analogue hearing aids. My family & I arrived in Christchurch NZ in 1995. The Starkeys proved painful with loud noises & useless. The Starkeys broke & after a year I asked my East London audiologist for a refund. After evasions he repaid some of my money.
In Christchurch NZ I stopped teaching as I was too deaf. I'd tried retraining as a NZ teacher at the end of 1995, but dropped out of the teacher retraining course as I couldn't hear school kids nor teachers properly, even with my analogue hearing aid. In 1996, I read a post grad horticulture diploma at Lincoln Uni. I dropped out after a semester as I doubted the diploma would find me work. Thereafter I did labouring / clerical work in Christchurch for a couple of years before stopping & going on the dole. Teacher wife, Leah became breadwinner while our 2 sons grew up in Christchurch.
Over the next 2 decades in Christchurch I saw NZ audiologists, doctors & an ENT specialist. (Never mind NZ doctors milking WINZ for deaf & depressed Sickness Beneficiaries, a long story). They couldn't cure my nerve deafness. Early days, an audiologist gave me 2 Phonak, shop soiled, analogue hearing aids. Useless. I acquired another pair of Phonak analogue hearing aids after a deaf friend died. Useless. I bought a Widex digital hearing aid which proved adequate in quiet environments over the next 18 years. It was useless with any background noise like at restaurants. I didn't buy 2 expensive Widex digital hearing aids, as I'd had so much trouble with analogue hearing aids.
Once our sons settled into their Christchurch jobs, after 3 years of Christchurch quakes, Leah got a 3 year teaching contract at Lake Tekapo School. We moved to Fairlie & 4 days a week Leah commuted to Lake Tekapo School. One day a week she taught at St Josephs School, Fairlie. During that time my old, Widex digital hearing aid played up, with intermittent, loud, beeping noises which disturbed me, my family & anyone else within hearing aid beep range. In mid 2016 I took the Widex to a Timaru audiologist for hearing aid repair. (Other hearing aids I had had also needed expensive repairs over the years). The audiologist looked at my old Widex, gave me the usual audiogram, beep test, pronounced my profound deafness & gave me 2 Bernafon digital hearing aids, an improvement on the Widex.
She said as my deafness was so profound, I was eligible for one Cochlear Implant, via the Southern Cochlear Implant Programme (SCIP).
At the end of 2016 Leah got a teaching job in Timaru, advising 40+ Southern Canterbury schools about literacy resources. We moved from Fairlie to Pleasant Point for Leah to commute to Timaru.
2. Southern Cochlear Implant Programme Assessment:
For rich folk the Cochlear Implant Assessment costs $750. I didn't pay, as I was referred by the Timaru audiologist.
In Dec 2016, I received a letter from the Southern Cochlear Implant Programme, based at St George's Hospital, Papanui, Christchurch, informing me of my Cochlear Implant Assessment which would take place over 2 days in January 2017. The letter incl a claim form stating I could only claim travel & accommodation costs after 6 visits to Christchurch. That meant stiff petrol, car wear & tear & motel costs for us, just to tell me once more I was profoundly deaf & needed a Cochlear Implant.
Despite my new Bernafons, as I lip read Leah well, Leah attended the following appointments with me as my interpreter:
Thurs 19.01.17. St George's Hospital, morning appointment, 2 hours with an audiologist: She spoke clearly in her quiet office, but I needed Leah to interpret quite a lot, as the audiologist was a UK expat with a Pom accent. She listened to my deafness story, gave me the usual audiogram beep test & pronounced my profound deafness. (Duplication of my Timaru audiologist's audiogram). She emphasized a Cochlear Implant was expensive, that the waiting list was about 140 & the Cochlear Implant Programme only had annual funds for 20 Cochlear Implants per year. She later posted me a copy of her assessment report & audiogram, recommending I needed a Cochlear Implant.
Thurs 19.01.17. St George's Hospital, afternoon appointment, 1.5 hours with a rehabilitationist who would oversee my rehab if I had a Cochlear Implant. She spoke clearly & eloquently in her quiet office. I heard her well. Like me she wasn't born deaf, but went deaf later on. She'd paid for her 2 Cochlear Implants by mortgaging her house. Fine if you had a house to mortgage. I didn't.
Like the audiologist, she emphasized that Cochlear Implants were expensive, that NZ govt only provided one Cochlear Implant for each deaf person on the programme, annual funding was low, that the waiting list was long & I'd have a long wait for a Cochlear Implant. She said as I was now on the Cochlear Implant waiting list I would never be bumped off the waiting list, which happened with other state medical waiting lists.
She suggested I write to my MP & Minister of Health to enquire why state funding was scarce for Cochlear Implants? She gave me a grant application form to apply for a Cochlear Implant grant, but emphasized there was no guarantee I would get a grant soon & should apply every year. (Rigamarole of getting annually inflated quotes). Maximum grant was $45000 per Cochlear Implant & surgery. (Eight years ago the grant max was $25000, showing inflation & troughing service providers). If I ever got a Cochlear Implant via SCIP, later on I could apply for peripherals, like repair or replacement of processor, repairs after warranty, consumables & spare parts. Cumbersome funding for dubious hearing benefits. I told her I was sceptical of the SCIP.
As I'd found in the past in South Africa & NZ, medical people used deaf people to milk money for themselves & not for deaf people. In the Southern Cochlear Implant Programme office at St George's Hospital there were was a receptionist, clinical coordinator, doctors, audiologists, rehabilitationists (for adults) & habilitationists (for children) all slurping salaries from the deafness trough, even before I saw an ENT specialist.
Fri 20.01.17. Specialists at Nine, Caledonian Rd, afternoon appointment, half an hour with an ENT specialist. In his quiet office he didn't speak clearly & Leah had to interpret most of what he mumbled. He went through ENT mumbo jumbo I'd heard before in SA & NZ that I was deaf, I had wax in my ears, that he must check my ears while I lay on his couch... He showed me a Cochlear Implant device & a plastic ear model with a Cochlear Implant. He answered my questions & reiterated state Cochlear Implant funding was scarce. The Cochlear Implant operation would take place at Forte Health, Kilmore St. Post Christchurch quakes, Forte Health was built, a private clinic funded by doctors with shares in Forte Health.
The Cochlear Implant was glorified trepanning where the ENT specialist drilled a ledge on my skull bone, planted the implant on the bone ledge, short circuited my perfectly normal outer & middle ear with an implant electrode wire covered in plastic which he inserted into my cochlear to stimulate my auditory nerve. He then stitched my skull skin closed. About a month later, after skin & bone healed, the implant processor hanging on my outer ear & attached to a magnet in my skull implant would be activated. The audiologist & rehabilitationist would enable me to use the device.
Snag: The ENT specialist wanted to place my Cochlear Implant in my "good" ear, which enabled me to still hear with my Bernafon digital hearing aid. The rationale was that my "bad" ear would take longer to rehabilitate with a Cochlear Implant. If the ENT specialist botched the implant operation, or the implant malfunctioned, there was no going back to my digital hearing aid.
The ENT specialist gave me a Cochlear Implant Advice Sheet which read:
Usually takes 1.5-2.5 hours under a General anaesthetic:
The anaesthetist will assess you on the ward before your surgery. I will see you on the ward or occasionally at the anaesthetic room.
Steps once asleep and practical points to know:
Antibiotics given through the drip
Reduces likelihood of wound infection or the rare complication of meningitis. [Complication huh? After drilling a hole in my skull!] Should have vaccine prior to surgery date.
Hair shave behind and above ear
Will grow back.
Site for Receiver Stimulator marker
For bilateral or second side implantation every effort to be made to align the implants symmetrically. However due to the curvature of the skull and the healing process they do not always end up at the same level on the skull e.g. different height above ear.
Incision made behind ear
Top of ear may feel numb afterwards. Usually recovers within 3 months.
Bone drilled to expose 2 nerves
Taste nerve: may have metallic taste. Usually recovers within 3 months.
Facial nerve: rarely weak face post op. If present it is usually temporary.
The inner ear / cochlea is then entered
Balance may be affected. Common in first 24 hours, may last a few weeks.
Electrode wire inserted
Full insertion is usual but rarely insertion is incomplete. "Device failure" is when the electrodes don't all function. Occasionally some electrodes need to be turned off. The audiologist will adjust the MAPing for these situations.
Hearing may go completely in that ear. Ringing / tinnitus may sometimes increase as nerve endings die off. This usually improves over time. [Sounded dodgy. Cortical cells destroyed to accommodate electrodes which may or may not work!]
Wound closed
Hidden stitches used. Do not need to be removed.
Head bandage applied
Stays on for 48 hours.
You will be in recovery for 1-2 hours
I will ring your contact person if you wish.
On the ward:
You will receive 2-3 doses of antibiotic. You will have an X-ray the following morning to document the position of the implant. You may be discharged from hospital afterwards. A prescription for pain relief will be supplied. Most people remove the bandage themselves the next day (as well as the underlying dressings). However, if you would prefer, you can see your GP practice nurse or come back to the ward to have it removed.
After you go home:
You should keep the wound dry. A family member or friend may wash your hair if you hold a cup over your ear and use a hair dryer to dry any water that gets on the wound. You should see your GP in 1 week for a wound check. If you are from Christchurch I can see you at this time. It is normal to feel a small bump behind your ear.
"Switch on" is usually 2-4 weeks after surgery. The implant programme will organise this with you. My secretary will organise an appointment with me around this time also.
3. Costs: After seeing the ENT specialist, Leah & I went back to St George's Hospital to enquire about costs for a Cochlear Implant. Days later, I received an email giving costs of Cochlear Implant devices & long term maintenance costs, but wanting me to email around for estimated Radiology, Anaesthetist, Surgery, Hospital costs, as follows:
*Radiology pre op CT Scan: Cost unknown, no quote given by SCIP, surgeon, radiologist
*Post op X-ray: $101.60
*Anaesthetist 3 hours in theatre: $1800.00
*Surgery pre op visit: $114.50
*Surgery: $4700.00
*St George's Hospital theatre time (120 mins): $2290.00
*Medical Supplies: $4500.00
*Recovery: $350.00
*Accommodation per night $655.00
Medical costs were sick.
The Southern Cochlear Implant Programme supplied the following costs, administered by deaf troughers & tax minions, wanting their cut from the deaf before any Cochlear Implant:
Please find below our charges and fees. All prices are GST inclusive and may change without notice. These charges are subject to our Terms and Conditions:
Prices
Prices provided here are accurate as at 25 November 2016 but may change at any time. [Inflated by manufacturers, retailers & wholesalers slurping the deafness trough]. For implant prices and fees, please request a formal quote valid for 30 days. [Making any quote request a waste of time & energy].
Equipment Manufacturer
Our programme offers the choice of 3 equipment manufacturer's systems, Cochlear Limited, Med-EL and Advanced Bionics. Selection is done in consultation with you and clinical staff. Your personal preference may not be available under some circumstances based on clinical grounds - this will be made clear to you at the time of consultation.
Invoicing and Payment
Payment should be made against our GST invoice at the time of consultation. All SCIP related services and equipment (Assessment Fees, Cochlear Implant equipment, Consultation Fees, Spare Parts, Batteries and Repairs) are payable on invoice at the time of consultation.
For initial implant system charges only, 10% deposit at time of confirmation is required. [I wasn't confirmed, just on a nebulous waiting list]. Balance can be paid in 3 monthly instalments, with the first payment required prior to surgery. [I must invest in more Lotto tickets]. After the first 2 years, follow up appointments at SCIP are invoiced at the hourly rate quoted and payment should be made at the time of consultation. [A money making factory for SCIP paid by CI recipients, similar to deaf troughing audiologists, audiometrists & WINZ doctors].
Payment for all other specialist services (ENT Fees, Hospital Fees, Anaesthetist Fees and Radiology Fees) [Above] is via the specialist or provider concerned, subject to their own Terms and Conditions. The SCIP is not responsible for costs, prices, or the Terms and Conditions of other providers. [SCIP just flogs Cochlear Implant devices, support equipment, consumables, captive audiologists & rehabilitationists / habilitationists].
Speech Processor Upgrades
Your speech processor will need to be updated at some stage in the future. Currently the approximate life of a processor is 7-8 years. [As opposed to my cheaper Widex hearing aid which needed major repair after a couple of years & lasted about 15 years before going bung over the next 3 years].
Warranty
The Cochlear Implant, speech processor and consumable parts are warranted against defect and failure. Please consult the relevant manufacturer's terms and conditions for specific warranty terms.
Travel and accommodation assistance
Patients who fund their own Cochlear Implants are therefore also required to fund their own travel and accommodation costs. Please be aware, that when you come to Christchurch or Lower Hutt [Northern Cochlear Implant Programme] for your Cochlear Implant appointments you may need accommodation. You may also need to stay in Christchurch two - three days after surgery following discharge from St Georges Hospital (this is dependent on recovery) and another two days at time of switch on. [The ENT specialist's Terms & Conditions I read & signed wanted my surgery at Forte Health, another deaf troughing, money making factory].
Bilateral Patients
Simultaneous Cochlear Implant Procedures
Some patients who are provided a Ministry of Health funded Cochlear Implant system may elect to fund a second simultaneous implant system at the same time.
Please be aware that only those costs associated with the publically funded procedure will be met out of Ministry of Health funds. Any treatment costs, including unforeseen costs, [botch ups?] not associated with publically funded procedure must be met by the patient. [Sounded dodgy].
As part of the pre-implant assessment process the clinical staff will, on clinical grounds, recommend an ear for unilateral implant. This recommendation will be done prior to surgery. This ear will then be deemed the funded ear; the other ear will become the private ear and any treatment costs associated with this private ear must be met by the patient. [Would my hearing coordinating brain then become part funded, part private too?]
Sequential Cochlear Implant Procedures
Some patients with an existing Ministry of Health funded Cochlear Implant system may elect to fund a second (sequential) implant at a later date. [After cortical cells were buggered by the first deaf troughing op].
Please be aware that any costs associated with the privately funded ear must first be met by the patient and the Ministry of Health funded services cannot be used to subsidise private procedures. [Resulting from botch ups by SCIP surgery].
This includes the cost of travel and accommodation to attend appointments for treatment procedures associated with a privately implanted system.
Any treatment costs, including unforeseen costs, [dodgy] not associated with the publically funded procedure must be met by the patient.
[The above SCIP Terms and Conditions avoided the fact there was little funding from the Ministry of Health for Cochlear Implants].
For questions regarding our Terms and Conditions please consult either the Finance Administrator or the General Manager. [Hopefully they lobbied MPs & the Ministry of Health for the long SCIP Cochlear Implant waiting list].
Cochlear Implant System - Equipment only
Cochlear MED-EL Advanced Bionics
*Implant system (implant & speech processor) $30190.00 $30190.00 $POA
Bilateral system (sequential or simultaneous) $25357.50
Applicable to patients with existing Cochlear Ltd device - valid until February 2017
My wife recently bought a second hand, 1300cc, Toyota Vitz for $6000, incl h.p. to commute daily from Pleasant Point to Timaru. Go figure, as evidently profoundly deaf people were ripped off by Cochlear Implant pricing, hospital care, anaesthetists, surgeons & radiologists. Cochlear Implant & MED-EL Implant pricing being identical, looked like monopoly pricing. Over 3 years ago when I went to my Christchurch audiologist & GP about my wavering Widex hearing aid, neither mentioned the SCIP, but both encouraged me to buy expensive hearing aids.
Worse:
Consultation Fees - Audiology, Habilitation / Rehabilitation
Cochlear Implant Candidacy Assessment (Audiology, Rehabilitation) $750.00 [Ripoff. Described above].
"Meet and Greet" pre op discussion [ENT surgeon described above]. No charge. [He got his cut from his whopping surgery fees, above].
Post implant Follow-Up (Audiology, Habilitation / Rehabilitation)
*All appointments first 2 years post switch-on $5400.00 per implant
After 2 years post switch-on $200.00/hour per implant
A 40% discount on consultation fees is offered for simultaneous recipients on the second ear.
[And the SCIP wanted me to lobby NZ govt MPs for funding. A Google search showed that SCIP troughers had asked CI candidates like me to lobby MPs for years].
On-going Equipment and Spare Parts - representative costs
Below are representative costs for some consumable items that may be necessary for on-going maintenance of your Cochlear Implant system:
Cochlear Med-EL Advance Bionics
Std Rechg Battery $315 Battery pack frame $465 Please Enquire
Battery Holder $205 Coil with magnet $800
Coil $212 Coil cable $165
Coil-cable $127
Med-EL spare parts cost more than Cochlear spare parts.
Other consumables:
Disposable Batteries 10 pk $32
Dri Briks 3 pk $18 [Ripoff - silica gel in plastic packages for use in a plastic jar].
Speech Processor Repairs
Cochlear Med-EL Advance Bionics
Warranty period 5 years Warranty period 3 years Please enquire
Warranty repair No chg Warranty repair no chge
OOW repair $488.75 OOW repair $592
Med-EL processor repairs cost more than Cochlear processor repairs.
Speech Processor Upgrade Cochlear Med-EL Adv Bionics
Usually required after 7-8 years $8360.00 $11040.00 $POA
Med-EL processor upgrade cost more than Cochlear processor upgrade.
Cochlear Implant device & Med-EL Implant device cost the same, but Med-EL spare parts, processor repairs & processor upgrade cost more. As both Cochlear Implant device & Med-EL Implant device cost the same, why were Med-El's maintenance & repair costs more than Cochlear's?
None of the above costings showed any cost of failure of the Cochlear Implant in my skull, nor cost of surgery failure.
Totaling *asterisk costs, bare minimum costs for the Implant device, surgery & 2 year follow up, the grand total $50101.10 exceeded the $45000 grant.
$50101.10 single Cochlear Implant cost exceeded Leah's gross annual teacher salary.
Medical expediters needed to pull finger to reduce astronomical costs for Cochlear Implants.
4. Communication: 13-14.02.17. After posting a grant application for $50101.10 for one Cochlear Implant to the SCIP at St George's Hospital, I emailed the following to the National Rangitata MP, Jo Goodhew & National Minister of Health, Dr Jonathan Coleman:
Cochlear Implant Funding - Southern Cochlear Implant Programme.
I am a NZ resident of 22 years, emigrated from South Africa in 1995. I have over 20 years' full time experience as a teacher & personnel officer in SA. I wasn't born deaf, but gradually went profoundly deaf over 30 plus years due to Grofit kibbutz farm machinery noise in 1982 causing my deafness. Analogue hearing aids proved inadequate & I stopped teaching on arrival in NZ. Digital hearing aids are still inadequate for my profound deafness.
Presently I live with my wife at Pleasant Point. My teacher wife is breadwinner, commuting daily to Timaru. My two adult sons, ages 30 & 25, live and work in Christchurch.
After referral by my Timaru audiologist, last month at St George's Hospital, Christchurch, I was assessed by the Southern Cochlear Implant Programme, which found me eligible for a single Cochlear Implant. I was informed the Cochlear Implant waiting list was 140, but there was annual funding only for 20 Cochlear Implants.
My Google search found there were Cochlear Implant funding shortages for years, as well as astronomical rising costs for Cochlear Implants, surgery & Cochlear Implant maintenance & repairs thereafter.
With the present status quo, I must wait years for a Cochlear Implant. Recent quotes give costs about $50101 for a single Cochlear Implant, done via the Southern Cochlear Implant Programme. Our family cannot afford to pay for a private Cochlear Implant. Never mind expensive, ongoing repair & maintenance costs.
A Cochlear Implant would greatly improve my hearing & quality of life. My wife has had a deaf husband for 34 years of our marriage. My sons have always had a deaf father.
Please let me know why there is so little NZ government funding for Cochlear Implants?
Thank you.
Mark JS Esslemont
P.S. More info about Cochlear Implants & the Southern Cochlear Implant Programme Assessment & Costs can be found on my Woza Wanderer blog...
17.02.17. I received a form letter from the Clinical Coordinator, SCIP, dated 14.02.17, which read:
You were recently seen by our Centre for a cochlear implant assessment by our Clinical staff.
The results of the assessment indicate that you meet the candidacy criteria for a cochlear implant. This means that you are likely to derive more benefit from a cochlear implant than your current hearing aid or hearing aids.
Although you are a suitable candidate, public funding for cochlear implant surgery is limited and is therefore prioritized. [How?]
Based on your clinical assessment, you do not meet the threshold [Profoundly deaf not deaf enough huh?] for a publically funded implant and as a result are referring you back to your local provider with advice for management of your hearing loss. [A waste of resources as my new digital hearing aids were useless with any background noise]. This may include a review of hearing aids [done over more than 30 years of deafness] referral to a hearing therapist, [trougher] the provision of assistive devices such as FM systems [risibly expensive] and other community supports [already sussed over many years: trougher orgs; deaf culture sign languages; loop systems in cinemas, courts, churches, lecture halls; amplified telephones; caption telephones; TV captions...]
While you don't meet the threshold for a publically funded implant at the moment, you remain on the programme. If there is an increase in funding and you meet the threshold [what?] at a later date, we [who?] will advise you at the earliest opportunity. If your circumstances have changed since your original assessment and you feel you warrant a review of your clinical priority [what?] please contact our clinic. A change in circumstances may include:
* A significant change in your hearing. [My hearing changed to profoundly deaf over many years].
* Increase in difficulty hearing at work [don't work, deaf for years] in education [I stopped teaching after leaving SA & couldn't hear lectures at Lincoln Uni in 1996 despite my analogue hearing aid] or at home. [Without hearing aids I'm completely deaf].
* Caregiver responsibility [N/a. Leah & sons were my unpaid interpreters].
* The effect of your hearing loss on your quality of life and mental health. [Crap. Huge financial, social & emotional costs. The bulleted points were discussed at my SCIP assessment, rendering them repetitive & patronising in a form letter].
A request for a review of your clinical priority should be supported by information from your GP or other health care provider. [Troughers. e.g. In 2011, when I saw my GP & Bay audiologist in Christchurch about getting new digital hearing aids via WINZ, they were both duplicitous: checking my blood pressure, referring me for blood tests, referring me to the GP's unqualified wife for hearing aid advice, or trying to dupe me to buy mega expensive digital hearing aids. Neither GP nor audiologist referred me to the SCIP in Christchurch].
You may proceed with a cochlear implant at your own cost through our private service at any time. [$50101.10 for one implant. Cough]. Please contact us if you wish to pursue this option. [SCIP screened & solicited both state & private patients simultaneously. No separation of SCIP state & private costs. e.g. private ENT specialist on SCIP milked either state or private patients with exorbitant costs].
Please do not hesitate to contact us if you have any questions about this [sick] letter....
Copy: Audiologist... Timaru.
The risible thing about the letter was that the SCIP's audiograms showed me more profoundly deaf than my Timaru audiograms done a few months ago. i.e. SCIP's audiogram curves were lower than my Timaru audiogram curves. A significant change in my hearing.
Letter dated 20.03.17 from the Southern Hearing Charitable Trust Grants Committee:
"Thank you for your recent application to the SHCT Charitable Grants Committee.
The Committee received 15 individual applications and had $50 000 to allocate from a single benefactor. The Committee met on 1 March 2017 to consider all applications.
The limited availability of charitable funds means that the Committee was unable to approve all applications and on this occasion your grant application has been unsuccessful.
The Committee would like to thank you for taking the time to apply. In the event that further charitable funds become available at a later date then we will notify you of this and you may apply again."
Busy work for bureaucrats who expected waiting listers to apply year after year for a grant which presently only covered one Cochlear Implant as above. What a farce! Cochlear Implant candidates were also expected to lobby current MPs for funding to enrich said bureaucrats & medical staff.
After sending my lobbying email (above) to Jo Goodhew my National MP, a lackey replied asking whether my email could be sent to Dr Jonathan Coleman, Minister of Health. I didn't reply as I'd already sent my lobbying email to Dr Coleman.
19 April 2017. I received the following email form Nicky Wagner, Associate Minister of Health. Despite her National govt praising verbiage, she avoided answering my email question above.
Thank you for your email of 18 March 2017 to the Minister of Health, Hon Dr Jonathan Coleman, about cochlear implant funding. I am responding as the matters you have raised fall within my portfolio of responsibilities as Associate Minister of Health.
The Government recognises the positive effect that cochlear implants have on people's lives. As a consequence, in 2013 the Government invested in improving the provision of cochlear implants by doubling the number of implants delivered each year to adults and continues to consider additional funding for implants alongside other health and disability priorities. [Meaning the National govt had funded about 3 CI per N Island & 3 per S Island in 2013].
[Despite 2017 being an election year, Nicky didn't say whether National's funding / numbers for cochlear implants was doubled for 2018. Considering ex PM John Key's $26m wasteful, 2016 flag referendum, $26m could've paid for 520 cochlear implants, today's prices, wiping out the waiting list].
As you know, the Ministry of Health currently contracts two trusts to deliver cochlear implant services nationally. [Enabling trust lackeys to siphon govt money for trust expenses instead of actually doing cochlear implants. The 3 SCIP staff who assessed me for a cochlear implant all said funding was low]. Each trust is contracted to provide 20 implants for adults each year. [At 2017 quoted prices above, roughly $1 000 000 cost per N island & $1 000 000 cost per South Island. A risibly low amount]. These trusts are also contracted to provide implants for children. The trusts can reprioritise funding to provide additional implants for adults if there is less demand than anticipated to provide for children's implants [Er what about trusts' waiting lists for children & adults Nicky?]
The Government acknowledges that there is growing demand for adults to access cochlear implants [due to limitations of digital hearing aids & referrals by audiologists, like Bay Audiology] and that there can be long waiting times for some people. [So provide more funding for cochlear implants!] Priority is given to people with the greatest need and ability to benefit from an implant. [Codswallop!] If you consider your circumstances have changed and your need for a cochlear implant has become more urgent, you can contact the clinical assessment team at Southern Cochlear Implant Programme and request a review of your needs. [Busy work for bureaucrats when the need is obvious - I'm profoundly deaf & hearing aids are useless in noisy environments, assessed thus by audiologists in RSA & NZ for decades]. The programme can be contacted on freephone... or email...
Thank you for sharing your concerns.
Yours sincerely...
My lobbying proved that National MPs Dr Jonathan Coleman, Nicky Wagner & Jo Goodhew were slippery buck passers & circumlocutioners.
21.02.17. I emailed the SCIP rehabilitationist who'd assessed me:
Thanks for the interview last month. We are now settled in Pleasant Point.
Regarding my CI, I have done the following:
Got quotes, applied for a grant, done a blog post, emailed MPs Jo Goodhew & Dr Jonathan Coleman asking why CI funding was so scarce?
My question:
Should my CI fail (body rejection, botched operation, failed processor needing repairs...) would I be able to use my Bernafon hearing aid again on my implanted ear?
Thanks and regards...
No reply from the SCIP rehabilitationist.
Meanwhile I contacted my audiologist in Timaru & asked the same question. Audiologist's reply: I wouldn't be able to use my Bernafon hearing aid after cochlear implant surgery, as the surgery could damage cochlear hair cells when the implant wire was shoved past hair cells in my cochlea. I said I would then have to rely entirely on lip reading, as hearing aids & cochlear implant would be useless to me.
04.02.19. Latest SURGICAL ESTIMATE for a Cochlear Implant by the Southern Cochlear Implant Programme:
"Procedure: Left Cochlear Implant, Estimated Length of Procedure: 150 mins.
Surgeon: Mr ...
Length of Stay: 1 night.
Hospital: St George's Hospital.
Surgeon: NZ$7500. [Costs more than a Christchurch, low mileage, 2nd hand, Toyota Vitz car].
Preoperative Consultation: NZ$ 130.
St George's Hospital / Theatre Charges: NZ$3305.
Recovery: NZ$360.
Medical supplies: NZ$4500.
Accommodation (per night): $700. [Costs more than a posh hotel in Christchurch CBD].
Anaesthetist: NZ$1800.
Postoperative X Ray: NZ102.
The above costings are GST inclusive, are an estimate only and may be subject to change.
This estimate includes post operative consultations with Mr ... for up to six weeks after surgery at no charge. [Huh?] Consultations after six weeks will incur standard followup fee [What?]
If you have an insurance shortfall [Why necessary in a Welfare State run CI programme?] or if you are self funding your surgery the hospital may require this to be paid upon admission to the hospital. Please contact the hospital directly to discuss this.
Following your surgery you will receive three invoices (surgeon, hospital and anaesthetist) to send with your claim to your insurance company. Your insurer will pay these directly."
Without my touting CI Brand names, Southern Cochlear Implant Programme quoted a range of prices for various Cochlear Implant devices: NZ$16675; NZ$20125; NZ$21275 (2 different Brands); NZ$22425; NZ$28750; NZ$33810. A big discrepancy in pricing of different CI Brands.
Over time, there would be ongoing maintenance costs: Recharging the Battery; Coil (UHP) / Cable; Disposable Batteries; Speech Processor Repairs; Speech Processor Upgrades, amounting to thousands more dollars ... Different cost for different brands ...
Coda:
Op & Post-op Rehab:
Mar 2022. After 5 years, on the SCIP waiting list, Sept 2021 I had a Cochlear Implant op beneath my scalp on my left ear at St George's Hospital, Papanui Rd. Rehabilitation took months & many visits to St George's Hospital for appointments with supportive audiologists & rehabilitationists. My family's NZ taxes over 25 years had paid for my Cochlear Implant, costing approx NZ$50 000, excluding private travel costs from Pleasant Point to Christchurch & Christchurch private accommodation costs.
As I was profoundly deaf, my Cochlear Implant finished off any residual hearing I had, as the Cochlear Implant wire containing 22 electrodes was passed from the Implant gadget beneath my scalp through my middle ear (destroying my taste sense for months) into my inner ear cochlea.
2 weeks post-op my CI was switched on by an audiologist at SCIP offices, St George's Hospital, Papanui Rd. At first there was loud popping, static noises & speech sounded loud & robotic. Telemetry & mapping soon sorted that. My Cochlear Implant improved my hearing when I wore its magnetised processor attached to my outer left ear, like a normal hearing aid. But it took months to become used to the processor, fiddling with remote control from a separate gadget & mostly remote control from my cell phone: adjusting volume controls & forward focussing when background noises became excessive, like heavy traffic noises, kids screaming in playgrounds, restaurant kitchen noises... (I'd found hearing aids' volume control easier with a simple manual wheel to twiddle on a hearing aid). And of course I was still stone-deaf at night without the processor, which required nightly drying in a plastic box & nightly battery recharging, a tedious ritual. Ongoing costs: A new Cochlear Implant, rechargeable battery cost NZ$255, new cables cost NZ$225...!
I was not born deaf, but from age 30, I deafened for the next 40 years. I did my own Cochlear Implant rehabilitation by listening to lots of 1960s pop music, broadcast by Spotify direct into my Cochlear Implant. I'd found a manual of rehab exercises provided by SCIP rehabilitationists tedious & boring. Nature sounds & human speech came back quickly & clearly over the next few months. Conversations / discussions with family, friends & shop staff became clearer over the first few, post-op months, where I had to change my lip-reading habit to active listening. Listening to TV, Netflix, music videos, Spotify music & podcasts helped me rehab. Receiving cell phone calls were stressful at first (relayed direct to my Cochlear Implant) & it took me a while to become used to making cell phone calls, as cell phones were not made for easy use by deaf people. I had to force myself to actively listen again, instead of relying on TV & movie subtitles. Covid-19 mask-wearing by others made it impossible to lip-read, so I was forced to actively listen to anyone wearing a face mask. Some shop assistants kindly removed their masks when I said I was deaf.
Family was important for my rehab: My 2 sons, in their 30s, were delighted to have a deaf dad who could converse with them for the first time in their adult lives. They helped me get used to my new cell phone & ensured I knew how to use relevant rehab apps, like Spotify & how to make & receive cell phone calls. Our eldest son emailed me pop music he had recorded, like "Little Black Submarines", "It's a lovely Day"... which helped my rehab. Nice to hear his adult singing voice too. He enabled me to Google pop song lyrics & videos & gave me a harmonica to practise new sounds. Wife Leah was vital for my rehab. She attended all my appointments with audiologists & rehabilitationists to give family input. Since the mid 1970s her teaching career involved literacy teaching & learning problems involved with Literacy, like dyslexia. For years she'd been my deaf interpreter & my rehab involved her making word lists I needed to resolve my word hearing errors & get my brain used to word endings I missed initially with my processor. Early days, her saying, "Yeees!" would loudly hiss & explode in my head, so my audiologist had to tweak out that exploding, hissing sound caused by my implant & processor whenever I heard sibilants. Not the only tweaking required...
Despite my Cochlear Implant, I still had permanent tinnitus in my non CI, deaf ear & still had vertigo & intermmittent ocular migraines with scintillating scotomas in both eyes, which I stopped by means of either an ice lolly or my own version of EMDR: Moving my eyes from left to right several times & waiting for about 10 -20 minutes for my brain waves to resettle, thus obviating nausea & blackouts. Despite my 40 years of deafness in SA & NZ, no doctor nor ENT specialist had ever advised about optical migraines & scintillating scotomas, caused by my nerve deafness / Menieres Disease. I Google searched those things, incl EMDR. Long story...
If I had a noisy, busy day wearing my CI processor, average usage about 15h/day (noisy background sounds, like cafes, long car travel, traffic noises, like passing trucks & loud Spotify music for hours) my CI ear gave me loud tinnitus which disappeared after a good night's sleep. Whenever my audiologist changed my CI programme series (changed at every tweaking appointment during the post-op year) for the first day or two after the CI programme change my CI ear would give me loud tinnitus while my overloaded brain adjusted to the new CI programme. Thankfully that CI induced tinnitus didn't last.
Although 6 months after my CI op, my taste sense was slill faulty (no sucrose nor salt taste, due to op damage to my Chorda tympani nerve going through the middle ear) I don't regret having a new CI, as my hearing communication greatly improved, especially with family. Expectations by others could be a problem, like shop assistants wearing Covid-19 masks, masking their voices & nosy neighbours expecting me to hear perfectly with my new CI, after many years' deafness. I rebuffed one well-meaning neighbour after he insisted on fiddling with my cell phone (his wife in tow too) offering me Whatsapp on my newly acquired cell phone. Prior to my CI op, I had only used a cheap cell phone for texting family. Post-op, for months I explored the limits of my CI & Cochlear remote control app on my new cell. In noisy places like cafes & restaurants, I had to remotely reduce CI volume and use Forward Focus to mute loud kitchen noises, background music & chatter from neighbouring diners. At home, while watching TV or Netflix, I used the remote Mute button when Leah talked to me, to mute TV noise, as my brain became overloaded & I was stressed by her chatter and background TV noise simultaneously.
Nightly I am still profoundly deaf when I remove the processor for drying in its electric drying box & recharge the processor battery.
My Christchurch audiologist's take on my 6 months' post-op rehab:
"...Impedence Telemetry
Telemetery is checked prior to each re-mapping session. All measurements continue to be within normal limits indicating appropriate electrode function.
Mapping
Mark's microphone covers were changed, and his skin flap checked to verify that the skin under the receiver coil / magnet appeared healthy without undue magnet pressure - the site was of normal appearance. Mark's Maps were adjusted using a combination of objective measures (Auto-Neural Response Telemetry (NRT) and behavioural checks of threshold comfort levels. Mark advised that the new Map was clearer and a little louder. He was provided with this Map together with a slightly louder one, should this be necessary. Volume would ideally be set at level 6 or higher to enable optimal potential from the device.
Mark continues to enjoy all the new sounds he is now able to detect with his speech processor. He states that he has been enjoying Bluetooth streaming from his phone direct to his implant, and the family has been noticing that Mark has been spontaneously hearing conversation without seeing people's faces, something he would not have been able to do prior to CI surgery. It has been suggested to Mark he does some listening practice using Bluetooth streaming of Audiobooks or Podcasts to optimise auditory benefit from his cochlear implant.
Aided Speech Perception (recorded test material) presented at 55dBSPL - (SPANZ test)
(1) HINT SENTENCES
Auditory Alone: 96%
(0% pre-implant using bilateral hearing aids)
(2) CNC WORDS
Auditory Alone: 44% words correct. 77% phonemes correct
(8% words correct, 28% phonemes correct pre-implant using left hearing aid)
These scores continue to indicate very significant benefit from the cochlear implant compared to that obtained via conventional aiding.
Summary and Recommendations
Mark continues to make very good progress. We will continue to see him according to our usual protocols, and a further update will be sent out following his one-year visit..."
My Christchurch audiology updates were sent to my Christchurch ENT surgeon, Geraldine GP & Timaru audiologist who had recommended I join the SCIP programme all those years ago.
Since my CI journey began, I'd attended several venues: Timaru Bay Audiology offices (testing for CI candidacy); Specialists at Nine offices, Christchurch, (meet & greet potential ENT surgeon, CI candidacy sussing); SCIP offices, St George's Hospital, Christchurch, (SCIP audiology testing for CI candidacy, post-op audiology testing, mapping, programming & rehab); Timaru Hospital (pre-op Xray); Geraldine Clinic (pre-op vaccinations & GP visit); Forte Health, Christchurch (pre-op meet & greet ENT surgeon); St Georges Hospital, Christchurch (pre-op & post-op appointments with anaesthetist & ENT surgeon, X ray staff & many kind nurses giving me pre-op & post-op care: fancy bed with a bed adjustment gadget; antibiotic drip; pulse, blood pressure & temperature monitors; knee length boots with intermittent pressure to stop post-op blood clots. Some hospital safety protocols: A wheel chair, toilet seat going over the normal toilet. I didn't use it as I wasn't dizzy post-op, although I felt I was walking on eggshells - anaesthetic chemicals wearing off. One nurse wanted to watch me while I post-op showered, in case I blacked-out. Felt creepy. I didn't shower as I soon left the hospital.
Post-op year required a huge time / travel / accommodation committment to audiology & rehab appointments: return trips to / from Pleasant Point / Christchurch to St George's Hospital, SCIP offices. After 6 months post-op I'd attended 12 appointments: 6 audiology appointments with 2 different technicians; 6 rehab appointments with 3 different rehab technicians. 9 months post-op, I still had 2 more audiology / rehab appointments. Ditto 1 year post-op. Total: 16 audiology / rehab appointments in the post-op year. Thereafter I would have annual audiology / rehab appointments for SCIP check ups. A full time Clinical Coordinator arranged all those appointments which ran like clockwork. And I was just one CI patient.
During my 5 years on the SCIP waiting list SCIP never told me that post-op there would be many audiology mapping appointments & rehab appointments to get used to my CI. SCIP just posted me annual CI costs & annual grant application forms. In short, I was medically brainwashed.
Copyright Mark JS Esslemont.
See Cochlear Implant
See Nicky Wagner's tweet attitude to NZ disabled (The Press / Stuff Co)
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