Wednesday, October 3, 2012

Lessons I Learned From Being a Patient in the UCLA Health System

It's been over six weeks since the end of my Hepatitis C treatment and I've spent some time reflecting on my recent experience as a patient in the UCLA Health System.  Today I'm sharing with you some of the lessons I learned over the last seven months.  I hope some of these observations might be useful to you when you find your health care doesn't meet your expectations.

Sometimes the Health Care System Fails Us

The California Medical Association says:
As a health care consumer, there may be times when you are unhappy with your physician, hospital, or health plan and need to make a complaint. Some problems can be resolved informally simply by talking to the parties involved, but others will require that you follow an official set of "grievance procedures.” 
I'm amused by the easy way this statement attempts to put this issue into perspective.  I'm sure most healthy people might find a measure of comfort in this plainly stated fact, but for me, a more accurate statement would be:
As a person living with multiple chronic illnesses, you will often be frustrated and unhappy with how your physicians, hospital and/or health plan fail to provide you with the appropriate, cost-effective and person-centered medical care that you both need and deserve.
I believe how my Hepatitis C treatment unfolded is yet another example of how the health care system is not organized enough to treat me, a patient with multiple chronic illness.

Sometimes We Really Need Help

Second, can I be honest with you and acknowledge that there are times when I am so beaten down and worn out from my health problems and my medical treatments that I just can't be my best advocate?  Because this is exactly what happened to me!

Can I also say that I am so frustrated when I find myself in this position way more often than I would like, just because I am a sick chick?  I loathe putting my fate in the hands of others, especially when I have been let down more times than I care to count.  But once I got past the feelings of anger and vulnerability, I knew I just had to bite the bullet and ask for help.

Sometimes Conflicts Arise with Our Health Care Providers

I thought I had a good doctor-patient relationship with my hepatologist, a belief was based on the handful of 15 minutes appointment I had with him over the past 4 and 1/2 years.  I wasn't expecting treatment to be easy, but I thought my doctor would be there for me.  So image my surprise when, on two different occasions during my treatment, I realized I needed someone to help me resolve emerging conflicts between myself, my doctor and his hepatology treatment team.

As I admitted above, during treatment I was too overwhelmed by a boatload of side-effects to be able to figure out and resolve these new communication problems by myself. The only thing I knew with absolute certainty was that my needs as a patient were not being met and I was afraid my treatment success would be jeopardized if I couldn't get things straightened out.

Sometimes Even Patient Advocates Fail Us

So at the time it seems logical to contact the UCLA Patient Affairs Department and ask them to help me:
"The Patient Liaisons of the UCLA Health System...assist patients and their family members with various concerns that relate to their overall experience at UCLA. Such issues may include, but are not limited to, quality of care, staff interactions, access to care and general assistance and information." 
Unfortunately I didn't receive the assistance I needed from Patient Affairs.  So on July 24th, during a telephone conversation with the manager of the department, I ask to file a formal grievance.

This is what I thought would happen next:
"When you or a family member contacts the patient affairs office, the chair of the clinical team responsible for that unit reviews your records. The hospital will then provide a written response to you or schedule a conference." 
--Virgie Mosley, manager of Patient Affairs for the UCLA Health System, quoted by the Los Angeles Times
I was told that a formal grievance could take up to 30 days.  It's been 71 days now and I still haven't gotten a response from UCLA.

Sometime We Just Need to File a Grievance

When you are chronically ill, your health dictates that you need to pick and chose your battles.  But sometimes taking a stand is critical to winning the health care reform war.  So I decided last week it was time to pursue official grievance procedures, because I want to be an agent for positive health care change and an advocate from persons living with chronic illness, especially those with Hepatitis C infection.

As the patients using the health care system the most, I think it is our responsibility to thoughtfully bring our most pressing concerns to the attention of entities like health care licensing and accrediting bodies.  Because if we fail to speak up and share our concerns, we squander opportunities for the health care system to learn from mistakes, identify gaps in service and correct problems.

While this rarely will make things better for us in the short term, I truly believe it will make things better for all of us in the long run.

We need to keep our eyes on the prize.  We all want a health care system that knows how to competently and compassionately treat persons living with chronic illness.  To get there, we need to make our grievances known to the member of the health care system that have the power to recommend and implement changes.


I'll be back Friday with a resource list of organizations in the United States that you can contact when you need to file a grievance.

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Hayley-Eszti Szucs said...

Hi Selena, I just found your blog today, and after reading through quite a lot of posts I have to say how much I admire what you do and your attitude to life. I have recently started up my blog, I'm 20 years old and at the beggining of the year became quite ill and since have just got progressivly worse. Although I am yet to be diagnosed, my condition is believed to be one I will be living with for a many years so I decided to ignore the option of delving in self pity and doing nothing about it, but to share my experiences with others and also use blogging as a means of escape and encoprate my interests into it too. I look forward to your future posts! Take care

Hayley x


www.art2heal.blogspot.com said...

Love your post Selena - I too am a patient of the ucla system and live with a chronic health condition. I have felt trapped and unlistened to on many occassions...so, I totally get it. hope this email finds you feeling good.