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December 18, 2014 / 26 Kislev, 5775
 
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Hidden Agenda (Part Three)

(Names Changed)




In Canada and the U.S., the government has passed new legislation to protect us. However, it often makes our lives more difficult. The new Privacy Act is driving many couples insane as they discover they can’t do simple tasks for each other if both their names are not listed on documents or bills. In some high schools, children who have turned 18 do not need their report cards signed by their parents. They do not need to share their progress with their parents either. In fact the school is forbidden to discuss an 18-year-old’s progress with the parents without the student’s permission, it is their private information.


The Freedom Of Information Act is another document designed to protect us. It should give us access to see documents that have been written about us. But some schools, personnel offices and some other such places that keep files on people they employ, or take care of, know only too well how to get around this. Some like the idea of keeping two folders. One for sharing and one not for sharing. So when you ask to see your file (singular) you get to see only the one for sharing.


Few of us think to ask if another file exists, or if there is any other items that apply to us. Some places make getting the information they have about you such an ordeal, so convoluted, tedious and/or expensive, you just decide it isn’t worth it. This can also be true of a health care system as related in the following stories from the chronically ill and their well spouses.


Joseph was chronically ill. Complications from his latest illness kept him hospitalized for months. He was happy to be at the point where he could take himself in his wheelchair for x-rays, MRIs, lab work and other tests that could not be done in his hospital room. To Joseph’s great surprise, the hospital rules insisted that an orderly accompany him to all tests and procedures. This was not to ensure Joseph’s safety or to make sure he arrived on time. Joseph was told he could meet the orderly at the time of the test appointment if he wished.


The orderly’s sole purpose was to carry Joseph’s chart to the appointment. The chart contained confidential information that was for the hospital staff’s eyes only. Joseph was not allowed to see his own chart. He could of course request to see it. To do so would require filling out the correct application in writing, seeing that it got to the correct place in the large hospital, and talking to several people en route to explain why he wanted to see his records etc.


Jehred felt he was getting poor treatment. He had been forced to wait in his hospital bed for weeks until the surgeon found time to do a short procedure that would start the healing process of a pressure sore. As days turned into weeks, Jehred found himself getting weaker and weaker from his confinement to bed because of the sores. He knew that once the surgeon would finally get around to him, it would probably be another six weeks before he could get out of bed and back into his wheelchair and have some mobility. He feared he would never regain the limited mobility once he lost it.



Jehred told me he felt his care at the hands of this surgeon had been more then substandard throughout his stay. He was determined to get a copy of his records and see if there was anything in them that could help him get more appropriate care.


When he requested to see his hospital records he was told he had to apply through the appropriate channels in writing. They would photocopy his records at a mere 50 cents a page. This of course would take time, since there was over 1,000 pages in his file (not unusual for someone who has been chronically ill for a long time) and they wanted the money up front. The photocopying might also take months as they needed to assign someone to make the copies.



Freedom of Information Act not withstanding, finding out what has been written about you is often made extremely difficult. These records about us are confidential. It seems that almost everyone in a facility might be able to gain access to your records, except you. It is only the tenacious among us who might have the where-with-all to travel the maze to finally find out what is so confidential that it needs to be kept from us while being open to so many others.

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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

Printed from: http://www.jewishpress.com/sections/magazine/hidden-agenda-part-three/2005/12/28/

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