In the Queue of my life, no 44 – (Part 3 of 7)

…article continues…

 

Invest in my health

The health bureaucracy system has grown into a monster that seemingly no one is able to really control. The health care costs money, we all know that. But now I have cost the society more money in welfare benefits than a surgery on both ears costs, and I still have to wait another year. I lack words in an attempt to describe how pointless and Kafkaesque I think this whole situation is, he says resigned,

He observed the budget cuts at Rikshospitalet last spring with disbelief. Cutbacks on bed-days and OR time has direct effect on the capacity for CI-operations.
– My point in this mess is about the dividend between what we as a nation invest in health and what is being used for welfare benefits. In my case the state bleeds money totally unnecessary. To illustrate the pointlessness of it: this money could have been spent on further increase in CI-surgical capacity, improving after-surgery-support capacity or more cancer treatments at the hospital! It is a vicious circle: the more you save on health, the more money leaks into the welfare and the less BNP we are able to produce. My opinion about this is that it is an example of irresponsible management of the taxpayers money, Ulf says.

Ulf challenges the authorities to think of everybody who waits in health-queues as valuable customers to the hospitals and for the society.
– If our hospitals don’t have capacity to operate, it is about time we allow immediate treatment in other countries. The capacity is there. Economically we save money, no matter what.

In the Queue of my life, no 44 – (Part 2 of 7)

article continues…

Psychological burden

Ulf is a part time dad for an 8 year old boy.
– It is demanding for me as near deaf to be single dad for an active toddler which is very communicative. For me it developed in an unhealthy direction where I problematized the whole situation and got psychological problems. I “buried” myself in problems and developed insomnia-issues.
– Sleeping disorders are often closely related to one’s general well being, he says. He his grateful for the existence of “Center for hearing and psychological health” at Gaustad in Oslo. This center saved me, he says.

Has a dream

The big dream is to get CI on both ears.
– Next step is that I hope to be able to realize a career and get up someplace where I can make a difference.

I feel I have so much inside me and that I have a good grasp of the world around me. I believe I could make an impact someplace. In order to accomplish such a dream, I am totally dependant of the tool an advanced CI-implant represents, he says.
– In regards to my relationship to my 8 year old son, it is a dream that I have more surplus in order to stimulate him further in the direction of knowledge and activities. I simply hope I can become a better father, he says.

He fears that the dream of simultaneous bilateral CI remains just that; a dream. Today there is only children that automatically has a right to get bilateral CI. For economic reasons most adults only receive unilateral CI and the burden of proof is on him, in order to prove that he will benefit better from two rather than one CI. This provokes the 36-year old.
– If you develop bad eyesight on both eyes, would you be happy to have to document that you need glasses on both eyes? – It’s just plain outrageous, Ulf states.

In the Queue of my life, no 44 – (1 of 7)

Hard of hearing Ulf N. has been in line for eligibility-examination for CI (Cochlea Implant) for 18 months. That is very expensive for the state.

The IT-expert burdens the welfare services approximately 30.000 euros per year. In the 18 months he has waited the welfare costs are the equivalent of a simultaneous CI surgery on both ears. Today he is defined as deaf.
– With CI it is a well documented chance of me getting back the ability to understand speech and to be able to get back to a regular job, Ulf says. The waiting is long. It doesn’t only sap the welfare funds of money, but it also takes it toll on him as a human.

Total cost may become 100.000 euros in welfare benefits

Ulf has been waiting since January 2007. When Din Hørsel visit him in his apartment, the calendar shows 26. of august 2008. He still has a long wait ahead of him. He visited Rikshospitalet the day before and got word that he is now number 44 waiting for that all-important operation. He has received a guarantee for treatment which expires January 2010.

– If I get the surgery just as the guarantee deadline is up, I have received welfare benefits equivalent of 4 single-ear CI operations! Add into the calculation the lost tax-income for an IT-expert in productivity, costs for psychologist and other health-services, you don’t need to be a social economist to understand that it is horribly expensive for the Norwegian state  to have people with highly-sought-for skills beneficiaries of welfare.
– as a society it is an economical catastrophe! We are saving ourselves into the poorhouse, so to speak! [my comment: this statement references to the budget cuts in hospitals throughout Norway] It is utter madness that medically disabled are not treated quickly in order to get us back into work. – On a human level it is a constant state of emergency, he states.

Has something to offer in work-life

hcp_logo_168px telenorlogoIn 2006 Ulf had to cease practice in his professional life. He was then working for Telenor, the worlds fifth largest telecom-company. He had been there almost two years in a Telenor in-house program for disabled persons – Telenor Open Mind. – I worked as a trainee in the top management of the Norwegian Business division. To me it was fantastic and gave me a much needed confirmation that I have skills to offer in the work-life, Ulf tells us. After a long period of adjustments with fewer meetings and eventually days with home office, he suffered the exhaustion syndrome. He had to take the consequences of it and stop working.
– It wasn’t anything wrong with me mentally, it was my declining hearing that made me exhausted, he says.

 

…to be continued ….

Aftenposten Aften published my article 27.6.08

In Fridays issue ( dated 27.6.08 ) the article I delivered some 3 – 4 weeks back finally got published in the evening issue called Aftenposten Aften! I will post links to the article as soon as it gets published on Aftenposten’s web site.

They publish it on Aftenposten Debate-section on the net with a delay. I will publish it myself maybe even scan the paper-version of it and post it here. Aftenposten is Norway’s largest newspaper. I’m asking a few hard questions in it, and I am hoping for some real answers, but I’m not holding my breath for them exactly…
(I’m away from home, so don’t have the article available, will of course translate to English for you all asap)

Translated letter about my struggle to get CI before I die of age

This posting, originally a Norwegian e-mail, has been edited and shortened in order to adjust it to the blog and remove persons names and roles:

I was at Rikshospitalet in order to “nag one more time” today. Have moved up 10 spots since April, and is now in the 49th place. With the pace of operations since April, It will be my turn sometime autumn 2009…

I’m now in my second year in waiting for my examination for CI-surgery. (have had good opportunities for permanent employment in Telenor just prior to the worsening of my health condition) RHlogo

The otolaryngology-department (ØNH) tells me that Rikshospitalet recently have established their own coordinator for the “Faster back to work”-fund. (new readers can read this general document about the Norwegian effort for a more inclusive work life)

The ØNH-department are as per today NOT “connected” to this fund.

A few weeks back I made my physician to resend the application according to instructions found on this page:  http://www.nav.no/805343159.cms (the link is named ” Fastlegebrev 15-03-07 (pdf)”.

ØNH received this new application , but tells me in clear text that it won’t do much good as long as it hasn’t been sent to the “Faster back to work” coordinator. I ask if they can send the previous application to said person for me. Answer is: sure, but it won’t do much good. Better if you send a new one from you physician. (???)

ØNH also adds a question mark as to wether there exist enough medical expertise capacity enough to do any operation outside the ordinary queue under the “Faster back to work”-fund (it’s not supposed to suppress the ordinary health-queue) (it is a silent referral to the recent budget cutbacks in here…). They understandably decline to answer my questions plainly. It isn’t their job to say anything about these things anyway….

My physician re-sent the application to given address/person yesterday (this is the 5th application we’ve made in order to get me examined for the CI-operations).

navlogo

I hope we can work together constructively in order to find a quicker solution for me and a lasting solution for others who most certainly will follow me.

It is a hopeless situation to spend these years in a health-queue. And it’s a waste of welfare money, to say the least! These money could have been invested in my health instead, they would have given a much greater dividend to Norway Inc!

Use my blog for what it’s worth! A lot of information is there going some time back… I also hope to announce news about response from the Norwegian Treasury Department soon. I have received word that it has been worked on a response to my letter to them.

R.I.P Sten Harris

HARRIS2404_jpg_392265a Sten Harris died yesterday, after a long time of illness. Sten worked at Rikshospitalet for many years, operating most of the CI-operations up until now. He was a true CI-pioneer in Norway.

His illness and following death is probably one of the reasons that Rikshospitalet has problems with the capacity of performing CI-operations these days. Add that to the budgetary cuts made recently, and it is not difficult to understand that it will be hard to find a replacement.

Sten Harris last act as the leading medical surgeon at the Otolaryngology-departement at Rikshospitalet was to object to the severe budget cut by resigning from his position in protest.

He also appears in the news-video where I also appeared (video is posted permanently on the top left side of this blog).

He has also through the years been an advocate for bilateral-CI and other operations that helped many people to a better life. He participated in debates to the last (art.), and was involved in crucial research over the years, thus driving the development and understanding of CI and related subjects forward: “Researchers Ona Boe Wie and Sten Harris from the University of Oslo presented findings on the effect of bilateral cochlear implantation on spoken language skills in children from five months to 18 months old.”.

I did not get to meet him, but from what I’m told, he was a fantastic person. And I googled him and found numerous examples of his dedication to the cause of hearing/deafness.

Sten Harris, you will be remembered by many, many people. This is my post-mortem salute to you.

May you Rest In Peace

My letter to the Norwegian Treasury Department

The text has been translated and changed some, compared to the original letter in Norwegian.

My status and reason for writing this letter:

I have been hard of hearing all my life, and at the same time I have been working like everybody else at 100% in the IT-industry for as long as I could. Never learned sign-language. I am now deaf and I am not able to work. I wait for a bilateral CI-operation.

My general health is very much influenced by tinnitus and hyperacusis. It means I can’t stand certain sounds or loud sound. This phenomenon is examined closer in the article ”Recruitment”.

There are significant mental health aspects to my condition too, and that also affects everybody close to me.

It has been a several year long process to acknowledge the fact that I am now deaf. In this process I have made many experiences with “including work life” (aka link to NAV about IA (norwegian), follow this link for more information in English.), NAV and the healthcare system. Some positive, of course…

Where I am today

Despite a strong inner will, and a desire to be part of the working life I am hindered by the fact that I have to wait for the CI-operations that can give back my ability to function in everyday life again. I have IT-skills that are extremely sought for in the IT-industry today. I would be hired “on-the-spot” by one of the largest telecom-companies in the world; Telenor, to work with projects in the top management group for the Norwegian Business Division. It is a frustrating place to be right now, waiting for those CI’s.

My main point:

We have a serious socioeconomic flaw in our bureaucratic systems in Norway in 2008. Work disabled individuals like me, do not get adequate medical treatment that ensures our society continued productivity from same individual. I use myself as an example:

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