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I'm Leaving Florida to Save My Life

By Karen O., Broward County

I've lived in Florida since 1995. The primary reason for my relocation was the weather. However, at this point, I'm ready to leave for a higher standard of coordinated care and to survive my diagnoses.

Access to quality care is hard to find, always delayed and non-existent for my complex history. Attitudes, deception, bias, freely expressed prejudices, and language are barriers, so are persistent profiling and deliberate indifference. Some practitioners do not hesitate in saying they don't care or qualify me as a waste of time. They spent more time digging into my professional past than doing their job. One had the gall to find out my bank balance! Another advised to see a vet.

I've had life sustaining medication withheld twice. Of course, I was blamed for that and labelled non-compliant. Recently, I was a patient at a hospital in Hollywood. I was stunned at the caring attitudes, professionalism, and concern for my well-being so much, so I believed I was being pranked. At no time was I insulted, ridiculed, or dismissed. I did not have prior access to the provider on my dual eligible special needs Medicare HMO plan. My care in this specialty was a horror for decades.

Because my care and evaluations require unusual testing, my plan gave me considerable latitude in identifying treatment. Many Doctors did not accept this collaboration and balked at issuing necessary prescriptions for tests and became increasingly verbally abusive and resentful.

One Doctor asked to me explain one of my rare diseases as he stated he had no knowledge or education on it. Whilst I was speaking, he turned abruptly ugly and barked I was not going to tell him what to do. At no point in my disclosures about the disease did I do that; this demonstrates why my insurer offered me the freedom to choose the tests independently.

Nurse Care Management is an option offered by my plan. It is both frustrating and necessary. Language and communication styles again, have been barriers to overcoming gaps in my care, or difficulties with the primary care physician or his staff not issuing referrals, lack of a care plan or errors in referrals.

The Care Management Department recently claims I could not be reached for two weeks. I then learned my phone numbers were changed to ones not belonging to me. Other mishaps over the years include wrong durable equipment being ordered, denial of post hospitalization follow up, refusal to authorize the meal deliveries as part of my plan benefit and declarations of being busy or my case is too complicated.

Genetic testing is standard for my condition. I've been waiting more than five years for a clinician to order screens on one updated panel. The new consultant said his staff would call from March with the name of a preferred clinical geneticist.... I'm still waiting. A prior one at a tertiary care center in Miami declared she didn't have to do anything and withheld her report for years. Though she asked my opinions on which panels were needed, she denied their relevance in our exchange yet detailed its necessity in the report.

I am weary of fighting, advocating and arguing with medical personnel. Access to care ought not be a such a harsh struggle for a vulnerable fragile patient.

I am discussing with my plan its presumptions of my abilities to persist and continue in this route of constant battling. It is exhausting, harming and regressing.

Many believe my suffering is entertainment; the insurance company and its Nurse Care Management do not grasp the difficulties a person with multiple impairments face. They refer to me as "receiving services" but cannot identify what services those are. Even with a primary care Doctor executing referrals, there is a long discussion. When I confirm receipt of reports and a request for a "service" it is acknowledged as received. In following up, it isn't so, and I have to call the specialist to re-send. This delays treatment significantly by weeks and even months. Then the resulting complications are ignored.

I am grateful to have received such extraordinary "service" in Hollywood; my trust in Doctors in Florida is extremely damaged. It is in my best interests to move on. My lease terminates soon. I'm done.

I really feel endangered. Insurance coverage or private pay makes no difference. The attitudes in Florida make for dangerous medicine. There is no accountability, no system to hold any standard in practice or delivery of care.

I don't know what it is I'm "supposed" to "look" like with my diagnoses or even symptoms. I'm out of time in waiting for the Hollywood Doctor to respond. Time lost will not make me lose my life. I've had too many close calls with death with reckless and willful neglect.


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