Thursday, February 12, 2009

I'm Still Waiting ......

Waiting for anything is always frustrating, waiting to get some vestige of hearing back because of a slow government department is making me want to scream.



Just to recap - I was originally implanted in March 1993. For 16 years I had near normal hearing with the cochlear implant. In June 2007 my implant failed. In March 2008 I was reimplanted and my old electrode array sent back to Australia for an autopsy. A tear in the silicon was found, which was resulting in fluid ingression and loss of sound. Two months after my reimplantation, the new implant started deteriorating. In October it was found that the electrodes migrated out of the cochlea. I'm now totally utterly deaf. Again.

In New Zealand, we are totally reliant on government funding. No private medical insurance here in New Zealand will cover cochlear implants - we're the only OECD country in the world with private medical companies refusing cover them. Government funding falls into two categories. Either - under the DHB (District Health Board, where all my past funding has come from or if you've lost hearing because of an accident, then ACC (Accident Compensation Coporation) would pay for it.

On looking at my x-ray what looks like has happened is that where the electrode array was anchored, obviously swelled, up, and as the swelling went down, it pulled the array out of the cochlea. This is a rare event, but I'm not the first it has happened to, but I am the first it's happened to in New Zealand.

Because this happened after surgery - then it's termed as a medical injury, and is applicable for funding for it to be fixed under ACC.

My ACC form was duly sent off on the 18th November. On the form I put down that I was deaf and they could contact me via email or text phone. The week before Christmas, I rang them via the internet relay to find out where my case was at. I couldn't get hold of my case manager, so left a message for her to contact me via email. She did later that day and in the email she said she was I glad I contacted her because she had been trying to PHONE me! WTF??? I then realised my case manager knew nothing about deafness.

She told me that my case was still at their resident ENT specialist and they would have an answer for me in early January. I told her then that each passing day could mean scar tissue building in the cochlear, and that would lessen the chance of an successful outcome for me. She told me that I could always go ahead and have everything done, and they would reimburse me later. Oh - really? Sure - and just where do I have the money spare for that I wonder?

On the 6th January I rang via the internet relay to find out where my case was back. She explained that she had JUST got the case back from the resident ENT surgeon, and she has been advised to get an outside independent opinion from a Cochlear Implant surgeon in Christchurch. I bit my tongue, as this is New Zeland we're talking about. We're small. Tiny. All the CI surgeons know each other. However, I don't want my case to go offshore so I didn't say anything.

I rang several times over January each time she had no news as it was still in the hands of the outside independent specialist in Christchurch.

On 6th February emailed her and asked if there was any progress. Oh yes, we have to send it to an outside independent Cochlear Implant surgeon in Christchurch and this was sent off on monday. It will take 3 or 4 weeks, and then it has to go to the legatl team for another 3 or 4 weeks!! WTF? I thought she did that back in January? Checking the emails - yes that is what she had done. I expressed to her that I was really unhappy about this as I don't have time for this. Due process she told me.

I re-iterated that she was playing around with my chances of ever regaining hearing again. Due process she said.

Last week I went to see my MP (Member of Parliament) and told him first of the dire problems of Cochlear Implant funding in New Zealand. I outlined that there are 45 people on the waiting list for surgery right now. That's just in our Northern Cochlear Implant programme. However there are only enough implants for 5 surgeries from July to June 2009/2010 and none after that. That we needed more than a bandaid approach to funding - money being thrown at it in election year, but something more sustainable year in year out. Australia has 5 times our population, yet they fund 6.7x the amount of implants we do. In Australia people get two implants as a matter of course - in New Zealand we can't even get funding for one.

I pointed out that this lack of funding is affecting me. Should ACC turn me down, then I take an implant away from someone else on the waiting list, and for this reason, I have to wait for ACC to say Yay or Nay before a decision is made. Obviously it's in the best interests for everyone concerned to get funding from ACC first so if they do say yes, then our waiting list for implants goes to 44. Not for very long though - as at least 30 people go onto the waiting list per year.

My MP Jonathan Coleman is an ex doctor, so he understood what I was saying. I've met him before when my implant was going well, so the meeting for himm was like chalk and cheese - from near normal hearing to hearing nothing at all. He also understood how tiny the cochlea is and about scar tissue.

He has written a letter to the CEO of ACC asking for my case to be investigated as it's taking too long.

Today I heard that a friend of mine who applied for funding to ACC for his failed implant to be explanted/reimplanted, around the same time/or just after me, has had his funding approved already. Whilst I'm so pleased for him, it makes me all the more frustrated with my case and the length of time it's taking.

I'm still waiting.....

7 comments:

Morgan said...

Let's hope your MP can speed things up. Seems naff that your friend's has been approved so quickly but not yours.

Maybe it's one of the downsides of living in NZ that when you look at other countries they can get so much more than us. I guess we are always going to be like that while we have a small population. Bummer ay.

Dave said...

I certainly hope all your efforts will be rewarded soon. As frustrating as it is for you, I know it will happen soon. Keep pushing and we will keep sending positive energy your way.

David

Donna said...

Robyn,

All I can say it this stinks. I wish all of SWC could write letters on your behalf, but not being from NZ I guess that wouldn't help.

I sure hope your MP getting involved will speed up the process with positive results.

Good Luck
Donna in Philly

Colin said...

Hi Robyn, I'm concerned about the photo's. You seem to have lost a lot of weight!

Hang in there. We are hoping the best for you.

I still thing the Northern Cochlear Implant Trust should just fund the implant and then do the squabbling with ACC themselves. It matters not who pays but we should have had ours as soon as they failed. The cost to the tax payer would be much less. This is not at all about your suitability or eligibility, but simply politics funded from the same bucket, the NZ Government. Procrastination to make these decisions never add value for our democracy, only extra cost, and heart ache and grief for those caught in the middle.

Cheers
Colin

Karen Mayes said...

Hi,

I know I am a bit late in commenting to your posting.

Ouch, about the waiting game...having to deal with silence. My son, who will turn 12 years old next week, CANNOT live without his hearing aids. He has a progressive hearing loss in both ears and I know it would be a matter of time before his hearing aids no longer benefit him...

Hmmm... That is one disadvantage about technology... technology has its wears and tears, causing or caused by biological activities.

Hang in there.

Carol said...

Hi Robyn,
I think it is terrible that there is no funding as such. Do the NZ Government think that persons who cannot hear are second class citizens, or, worse, non-people? There is an excellent article floating around about the economic cost of deafness - you may have already read it - I believe you can access it via the Deafness Forum in Australia. I will try to do some research and see if I can post the link. BTW it is quite large (altho nothing compared to the .wmv files that lots of people seem to forward on to their friends these days)
I hope there is a speedy resolution of your case. This hanging around waiting is awful. Specially when the longer you wait, the more damage is getting done. :(
carol

Carol said...

Hi Robyn
here is the link to the report. It's the first one on the page - access economics 2006 the economic impact and cost of hearing loss in australia - I imagine it would be a similar scenario in NZ
http://www.accesseconomics.com.au/publicationsreports/search.php?searchfor=The+Economic+Impact+and+Cost+of+Hearing%92+&from=0

hope the link works
cheers
carol