Thursday, February 2, 2017

Southern Cochlear Implant Programme Assessment, Costs, Communication

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 blackouts & nystagmus. 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.

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 said. 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 then 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 & National Minister of Health:

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 for 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, 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 then 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.

Copyright Mark JS Esslemont

See Cochlear Implant

See Med-EL Cochlear Implant

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