Records should be obtained for all treatment, employment, and financial circumstances....
Ask the hospital to keep your samples forever.
The following excerpt is taken from Chapter 15 of
Colon & Rectal Cancer: A Comprehensive Guide for
Patients & Families by Lorraine Johnston, copyright 2000 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
The value of record keeping cannot be overemphasized. Having evidence in writing of your position is indispensable should disputes or questions arise. Records should be obtained for all treatment, employment, and financial circumstances, and should be kept in some organized way, in a place safe from fire, theft, or flood.
A new and very important concern you should address is the permanent storage of your biopsy tissue samples. Owing to the development of new treatment technologies, such as monoclonal antibodies and tumor-derived vaccines, your biopsy samples may be needed years after they are removed from your body.
Yet some hospitals limit storage time for such samples because their storage resources are finite. This means that, lacking instructions otherwise, they may discard your tissue samples after a number of years.
Ask the hospital to keep your samples forever. If they are not able to do so, make arrangements to store the samples elsewhere.
Simple though it may sound, getting copies of all medical information, including films, and getting written copies of all tangential records related to employment, insurance, and finance are sometimes overlooked. Here are some tips for obtaining records:
- Request and keep copies of all medical records and bills as you go through diagnosis and treatment. This will establish with the doctor's staff your expectations and set a tone of efficiency, and will permit you instant access to material if you need it for second opinions. Having copies made and mailed after the fact can add five or more days, even weeks, to the time you need to collect records.
- If you're requesting records that must in turn be forwarded to another health center, make a copy for yourself before forwarding the material.
- When you're hospitalized, or if your treatments are done in the hospital on an outpatient basis, ask for itemized copies of bills. General or summarized hospital bills can be astonishingly obtuse, and even an itemized bill can be unclear. Most errors in hospital billing are found only by using an itemized bill's relative clarity.
- Always address financial, employment, or insurance disputes in writing, and keep a copy of what you've written.
- Keep a detailed phone log of all calls made to insurance companies, mortgage companies, and so on.
- Any decision reached verbally to correct errors should be followed by a written confirmation from the company. Ask for this, and if they won't furnish a written reply, write your own reply, stating, "Based on our phone conversation, it is my understanding that the following will happen," listing what you perceive to be true.
- Keep a calendar of appointments. Do not discard it at the end of the year. Keep it as a permanent part of your medical and financial files.
- If space permits, your calendar can double as a log for phone calls, changes in medications or symptoms, blood results, and so on. Otherwise, school exercise books or blank journals, the kind from which pages cannot easily be torn, may serve well.
- Record outgoing correspondence. Send all correspondence that's even remotely important by certified mail, using the return receipt option. Unlike registered mail, which is logged at each stop in the postal system, certified mail does not travel more slowly than regular mail, and isn't much more expensive than regular mail. When the return receipt arrives, staple it to your copy of the correspondence: it is your proof that the mail arrived at its destination. Use fax transmission for speed when needed, but follow up with certified mail. An example of an appropriate use for certified mail is correspondence with an insurance company that requires 30 days' advance notice in order to review and approve treatment plans.
- Have copies of all original colonoscopy, CT, or MRI films made for your own files. While copies of the reports that describe and analyze these films are useful, access to films is mandatory for certain kinds of review and decision-making.
- If the original colonoscopy, CT, or MRI films are loaned to other doctors for second opinions, follow up to be sure they are returned to the central film library or original office.
I have been to four cancer centers and I have records from each one. I actually have a copy of all records from before my surgery to present time. I check each record and file it by date.
How little or how much you choose to organize will depend in some measure on how much energy you have, and on your record keeping habits. Don't be surprised if you find yourself, normally a well-organized person, suddenly without energy to file medical reimbursement forms. Others, though, may find that they become more organized as a coping mechanism.
You may find that record keeping is a task you can delegate to a family member, friend, or neighbor who would love to help you, but doesn't know quite what to offer. Although you may not care to have someone outside your family making phone calls to correct billing mistakes, having someone sort and file bills and receipts on a weekly basis may help you. Sorting mail into stacks for filing is a task that a child might enjoy; scanning and storing documents on a PC might be something that a computer-literate relative can do.
Whatever method suits your current needs, do attempt at the very least to store medical and payment records in some way. A minimal technique is to put all records in one place, such as in one or more grocery bags, in case you need access to them in a hurry. If you or your volunteers have the time and energy to do so, you may lean toward a fairly elaborate system of organization that gives you instant access to items by topic, health center, or date.