Sutter Health

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Cancer Update: September

Published September 19, 2018 by lynn k scott

Not a whole lot to report. I am experiencing issues of anemia again.  The same symptoms when I was diagnosed (almost exactly a year ago).

I called the oncologist’s office to find out what’s going on with my CT scan.  Well, it’s on hold because of their inadequate scan coordinator.  The facility, that’s in my city, can do the scan, but refuses to administer lidocaine to numb my arm for the IV.  I have collapsing and rolling veins.  Most IVs take two or three attempts (not to mention hurting like hell on each attempt).  They don’t do that on a “clinical level”.

Seems the scan coordinator is inept at calling the patient to update them or having someone else follow-up.   It would seem, the scan coordinator isn’t able to search other hospitals to see if they might be able to accommodate a very reasonable request.  Nah – let’s not do anything…we’re only talking cancer, right?

The receptionist was gracious enough to let me know that following up wasn’t in her job description.  She agrees someone should have called but couldn’t answer who would do that.  Let’s chalk that up to “no help”, shall we?  Then she told me to feel free to call back to check on the status.  I let her know I have been symptomatic.  Gave her all the symptoms.  Anyone with half a brain, working in a hematology office knows what anemia sounds like and should make sure the patient is called back.  Yea…not this office.

I almost passed out yesterday.  I was able to stay awake for 1.5 hours after work.  I slept after work and was in bed at 9:00 and went to sleep for the evening.  Their inept attitude is robbing me of my quality of life.

Am I demanding?  Yes.  I give them an opportunity to do their job and then I take off the “kid-gloves” and let them have it.  I will not apologize for being my own advocate; esp. when patient advocacy and the online help feature have also failed me.

I submitted a referral request for a doctor, who’s an hour away.  I asked for confirmation they received the fax and confirmation when it was processed.  The fax was sent over five hours ago.  Did the doctor’s office call:  Nope!  Now I have to follow-up with them; again.

There is no excuse I am receiving such horrendous treatment.  If I end up in the emergency room, I will not be paying a bill that could have been prevented by the doctor’s office simply doing their job.

Part of the blog is to show how (cancer) patients are being treated while facing a life-threatening illness as well as documenting issues should a lawsuit be necessary.

Sutter Health Plus, based out of Sacramento, California, should be ashamed at its inability to provide healthcare based on the needs of the patients.  I shouldn’t be forced to go to a subpar facility, even if they deem it ok.

Apparently, I have Schrodinger’s Cancer:  I either have it or I don’t.  Guess we’ll never know because my health isn’t a priority to anyone but myself.

 

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Cancer Journey: Part 14

Published June 21, 2018 by lynn k scott

After yet another phone call with Sutter Health, my oncology referral to Sacramento was denied.  The reason is the doctor is limiting her practice.  They referred me back to Vallejo.  I lived in Vallejo for eight years.  It’s gotten progressively worse and we moved away from that cesspool over six years ago.

I will be getting to see a native-English speaking doctor.  However, she is only in Vallejo one day a week, because her primary office is in a better city.   Colored me surprised…

I tried to make the appointment yesterday, only to be told the new patient coordinator was already gone for the day.  What?  It was 2:15 p.m.  Must be nice.  I left a voicemail that I needed to make an appointment and asked her to return my call.

Now, I tried to schedule an appointment with this provider three months ago.  They were unable to accommodate my schedule and Valerie, the coordinator, either hates her job or believes she is above us poor cancer patients.  I had the displeasure of dealing with her again.

Conversation starts with her calling me back and asking how she could help me.  Ummm…I know I left a message regarding booking an appointment (you know…you’re job – but I didn’t say that).  So, we had to start from scratch.  She never bothered to look for my referral before calling me back.  She had the wrong address (even though I corrected it last time we spoke and it was on the referral).  She didn’t like my exasperated tone.  She kept telling me to stop yelling at her.  At that point, I wasn’t.  However, after the third time she said it, and I told her she was part of the problem, she said, “did you just hear yourself?”

It was then I asked for her supervisor.  I wasn’t going to tolerate her crap a second time around.  Even my coworker, who could hear everything, and knows I wasn’t initially yelling, said, “I can’t believe how much trouble they are causing you.”  See, it’s not just me.  Part of the biggest obstacle of seeing a provider is their staff.  I finally raised my voice at Valerie, didn’t want to make a liar out of her, requested her supervisor and muttered a few not-so-nice words.  Ooops…she heard me…oh well…

Spoke to the supervisor and she starts to tell me that the doctor doesn’t go to the city I live in.  Umm…DUH!  I never said I wanted to see her there.  I knew she was in Vallejo and that’s I was trying to make the appointment.  Valerie couldn’t even get that straight.  We made the appointment.  I was supposed to receive a form to authorize the release of my records.  Three hours later…NOTHING!

I found the form online (which the supervisor should have known it was there).  Completed it, called for the fax number and printed the confirmation that it went through.

So now I sit and wait until my appointment next week.  The only benefit of seeing this doctor is that if I have to have any procedures, I will cross the bridge (same distance as going to Sacramento) and be seen in a better facility, in a better city.

Physicians and their staff need to be held to some sort of standard by the insurance carrier.  Patients need to have a recourse against them and their ‘holier than thou’ attitude.

I admit, I am less-than Christlike in my dealings with the medical community.  I attempt to “behave” for every interaction, yet it rarely plays out that way.  I keep praying for tolerance, but I’m not great at waiting for a response.  I have been “labeled” by my insurance and the providers; almost like a medical blackball.  I’m not giving up and I’m going to raise Cain, Hell and whatever else needs raising til patients are seen as people who need help; attitude be damned!

Sutter Health Insurance

Published June 19, 2018 by lynn k scott

I am not an easy patient.  I have little regard for the insurance industry and the doctors it employs.  I have become less than tolerant of the medical world since my cancer diagnosis.

Sutter Health Plus is the health insurance I have.  It’s the least evil of the three options I had to choose from.  That being said, they are far from acceptable.  They care little for their patients.

On Sutter’s website, it boasts how important it is to have a doctor you feel comfortable with.  That is a fallacy.  They don’t care how far you have to travel to see a doctor.  They don’t care if you don’t want to be seen in a certain area.  They don’t care that you can’t understand who they pick for you; even after declining their physician option (multiple times).  They prefer to hire immigrant doctors compared to native-English speaking doctors.  Where medical terminology is a factor, being able to understand your physician is paramount.  Apparently, that only applies if you want to see anyone but an native-English speaking doctor.  They hire for every other language, but English is overrated.  How “PC” of them….I digress.

You can make complaint after complaint about not receiving care, but NO ONE calls you for more information.  Non-doctors simply review your file and regurgitate their initial form letter and continually resend that information to you.

They can get you an appointment in the doctor of their choice, where you don’t want to go and ignore the fact you may have employment obligations to meet.  Did I mention they will give you an appointment out of your area and when you’re not available?

Providers are allowed to drop patients prior to making sure an acceptable referral has been found.  They fail to notify the patients of the change in providers.  Nurses refuse to let you speak to providers.  The online emails are answered by nurses and not doctors.  You get the privilege of playing the adult version of “telephone”.  You never know what their response is going to be, but it rarely is regarding the original issue you are inquiring about.

They claim physicians are required to tell you that they are kicking you out of their practice.  Well, I guess finding out, via another form letter, on a different subject is their view of “notification”.

Do I hang up on them…sure do!  I say what needs saying.  They ignore what I say but mark the notes that “contact was made and patient hung up”.  They fail to mention patient stated their option wasn’t viable.  Patient can’t understand who they assign, but as long as they cover their ass with a half-assed note, I guess they did their job, right?

This is how Sutter Health Plus treats cancer patients.  Western Health Insurance does the same.  They are such a small insurance company, they allow doctors to kick patients out, after ignoring patient concerns.

Keep telling the patient they have an ulcer.  Get irritated with patient because she refuses a G.I. referral.  Blame patient for “refusing care”.  Patient goes to the emergency room, where they have to treat her.  Low and behold, patient was right – it WASN’T an ulcer.  It was a Stage 3 tumor, blocking almost 100% of the colon.  Patient could have died, but hell, as long as the insurance companies continue to make sure they are “PC”, health care of individuals be damned.

I am sure there must be some diligent doctors somewhere, but the insurance carriers, call center staff (because you can no longer call a doctor’s office directly) and their nurses hinder receiving effective and timely treatment.

I will no longer be silent.  The insurance industry needs to change; esp. when it’s an HMO.  Patients are required to jump through hoops to “establish” with providers and to obtain referrals, but the doctors are not required to treat them.

Enough is enough.  Please share.  Silence is compliance!

Cancer Journey: Part 10

Published March 16, 2018 by lynn k scott

It’s been a bit since my last update.  Life’s been challenging.  I thought I had a handle on things and I really don’t.  I should resign myself to Murphy’s Law and that my house is its headquarters.

Overall, exhaustion has been my new BFF.  Every weekend, I am taking extra naps just to stay functional.  I had another drawn out insurance/specialty pharmacy/doctor’s office issue.  Someone, which no one will own up to, put a notation for pre-authorization on an existing prescription (with one refill left).  This meant, I had to wait for all the different parties to do their job.  After much yelling, crying, sarcasm and general disdain, the issue has finally been resolved.  I had to constant follow-ups for anyone to do their job.  We’re not talking aspirin here, folks.  It’s chemo-medication that costs a small fortune.  You would think those in the medical field would have some compassion and a sense of urgency.  Please don’t hold your breath on that; you’ll end up dead waiting for that to happen.

I have come to the conclusion that once I receive my meds, I will be asking for a referral to a new oncologist.  It’s clear this current office isn’t working out.  I’m sure everyone there will have a small celebration to see me leave.   If you advocate for yourself, it seems you are not the correct type of patient for many of today’s doctors.

It’s sad there are more doctors who care less about working with informed patients, who are in charge in making decisions about their care.  They shouldn’t be made to feel bad about their decisions.  Have snide comments thrown at them, such as “well, you chose not to do IV chemo”.  You’re right, I chose to live my life, not be dependent on everyone, continue working, supporting my family and raising my daughter.  It’s funny, they know how expensive medication and treatment costs, but they chastise you for not giving up your job, going on disability (which doesn’t support much) and losing quality of life.  That’s what going on IV chemo would have done for me.

I working on simplifying areas of my life.  It’s definitely a work in progress.  I know the value of time, family and friends.  Right now, I’m in limbo as to if treatment is working, if I will need more, if I will find out it’s spread.  There are lots of things one can think about while being in such a limbo.  I try to focus on today and accomplish what I can.  Making memories is a top priority, should something change; not for the better.

Either way, ups and downs continue.  It’s a daily battle that I still plan on winning.  I appreciate all who have said prayers, made donations for my care, or can relate to this ongoing struggle.

 

My Chemo Fundraiser

Cancer Journey: Part 9

Published January 30, 2018 by lynn k scott

I know I’m a few days late posting the next installment of my cancer journey.  I almost laugh now because in one of my support groups, they posted this….   1517344294492.jpg

Now I covered up a word (use your imagination), but it’s still funny.  In fact, my response to this was, “I’m small enough to be a hobbit”.  So…onward with my journey…

I logged into Sutter Health’s system yesterday to pay for my labs and doctor visits.  In addition to chemo meds, these charges are always waiting to be paid.  I started exploring their system and found my visit summaries from my oncologist.

Whether it was lack of sleep, a chemical imbalance because of the medication, or the fact fighting cancer is mentally (in addition to physically) exhausting, I became an emotional wreck.  First, I was very angry at what was noted and then I cried all the way home from work.

I am more than aware these notations are not for communication with the patient.  However, if doctors are going to note conversations or their interactions with their patients, they need to stop the one-sided comments.

For example, one of the notations state that I “refused IV chemo”.  First, let’s use the appropriate words.  I was given information, made an informed choice about MY health and “declined” IV chemo.  It was my choice.  Using “refused” sounds like I was an obstinate child who didn’t do as her parents ordered.  They think “informed consent” is a punchline of a joke instead of a patient’s right.

Several observations use the word, “denied”.  Denied symptoms, denied having this or that, etc.  In my opinion, that’s another word that shouldn’t be used in this area.  I was asked a question and I answered that it didn’t happen or didn’t apply to me.  How about “negative” and “positive” when correlating responses to symptoms, side effects, etc.  Using the word “denied” implies the patient isn’t being truthful.

My doctor was nice enough to notate how I am generally unhappy with my treatment.  Yes, I can say that’s a fair statement.  What isn’t accurate is she neglected to mention how her nurse verbally attacked me for refusing the preferred IV chemo when I asked for another medication because I am having trouble paying $232.68. every three weeks.  Or I’m unhappy Sutter Health chooses to only provide cancer support groups for one area of the county, during the day and it’s not accessible to all patients.

Now, testing showed up in the notes.  I refused a few suggested tests.  Why?  One again, was over 20 miles away and would cost me a day of work.  They have an imaging center close to where I am, but refuse to offer all testing there.  I don’t think it’s out of the question to provide genetic testing in all locations; esp. when it’s just meeting with a doctor and taking a DNA swab.  Silly me for being practical (and cynical; at this point).  Oh, she also left off that I mentioned I couldn’t afford the $350 for another one of the tests she suggested.

I am fully convinced healhcare doesn’t exist.  There is no caring on behalf of these desensitized doctors and nurses.  A health system is in place to offer treatment; if you can afford it.  If you can’t, they don’t want to hear it.  They will give you referrals, but most don’t work out (make too much money, not enough grant money, not old enough, not the right cancer, etc.).

So, going forward, to protect my sanity, answers will only be “yes” or “no” or “fine”; unless some further explanation is needed.  This is not the first time my character has been accosted by those who are supposed to be helping me.  I neither can fight this notation battle, nor do I care to.

I read another cancer blog today where the writer received some negative feedback because she wasn’t upbeat enough.  That’s how I feel sharing this with my friends and church family.  I feel negative.  Yet, the reality is, this battle is far from easy.  The trials we have to go through aren’t perky, happy, or fun.  In reality, battling cancer SUCKS!  It’s horrible.  Doctors only care about treating the body; to hell with the mind or soul.  The purpose of my documenting this is to give a realistic guide to what I am having to deal with.  This is a real-life, first-hand accounting.  I know it’s hard for some people to deal with; but I’m not sorry for sharing what gets covered up with mainstream accounts.

It’s almost depressing to feel so alone, while trying to retain your dignity, sanity and carry on in your daily life and battling a life-threatening disease.  I take longer showers now so I can cry uninterrupted and it won’t be visible.  My 12-year old doesn’t need to see my worries, insecurities and breakdowns.  Being strong has never been harder.

I am eternally grateful to those who have been able to donate, which allows me to continue treatment.

Chemo & Medication Fundraiser

Cancer Journey: Part 6

Published December 27, 2017 by lynn k scott

This is not the easiest post and it doesn’t have anything to do with the status of my diagnosis.

The last couple weeks have been tough.  I had to change my insurance plan, at work, and elected the “gold” versus the “silver” plan, in order to get rid of the annual deductible and bring down the usage fees when I see the doctor or get labs.  It also raised my weekly contribution costs, but it had to be done.

Unfortunately, with this plan change, came with a carrier change.  I joined the Sutter Health network and am sad to report they choose to charge patients a 20% copay for chemo medication, where other plans cover it 100% or charge a max of $50/prescription.  Hopefully, one day they realize how punitive this is and begin to cover oral chemotherapy pills as effectively as they do IV chemotherapy.

I left a plan where I was receiving negligent care and now I have a decent oncologist, but can’t afford an additional $300; every three weeks.  That includes the cost of the doctor visit, blood work and the expensive medication copays.  If I give up the ability to work (which eventually puts my job in jeopardy), submit to another surgery for a port, start IV medications, lose my independence, risk permanent side effects and not provide for my family, then the medication would be covered 100%.  Riddle me this…oral chemo is cheaper than IV treatment, but the insurance refuses to cover it 100.  Why?  Never mind; I digress.

After numerous breakdowns, I conceded I had to ask for help. I have had to resort to something I really hate doing.  I know fundraisers have helped many people and I have donated to those in need.  I was brought up that you work hard and support yourself.

I have followed the proper channels to ask for medication assistance.  It appears I was diagnosed at the wrong time of the year.  Nonprofit sources run out of money to help with prescriptions by the end of the year; that’s if they even acknowledge your disease.  Again, not all cancers are pink, but that’s where the funding is.

I have applied for part-time jobs.  I already work a full-time job, but need something to pay for my medication; even if it means working seven days a week.  I still am waiting for someone to hire me.  Problem is, I’m overqualified for the minimum wage jobs, even though I am willing to work weekends.

I have managed to get enough donations for another round of chemo.  However, I now have two weeks to raise enough money for the next round.  My pride is temporarily on a shelf and I have to post a link to my fundraiser.

If you are able to donate, even a $1.00, I would appreciate it.  If you are able to share either via blog or on your FaceBook page, that’s appreciated.  I plan on removing the fundraiser if I am hired or if some non-profit is available to help.

I apologize for having to post the link; but if I don’t raise the $300, in the next two weeks, my chemo treatment stops.  Please take a moment to read the fundraiser and if you don’t mind, share it where you can.

THANK YOU!

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