Health Affairs, 27, no. 2 (2008): 500-506 doi: 10.1377/hlthaff.27.2.500 © 2008 by Project HOPE	New Online   Senate Health Reform Bill   Rewarding Providers   Public Option Policy Brief   Health Reform & Abortion   Delivery System Reform

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Narrative Matters

Crossing The Atlantic

Let me say at the outset that many of my experiences came from navigating the National Health Service (NHS) on behalf my younger daughter, who has a combination of developmental delays, learning disabilities, fine motor deficits, and severe inattention. Her lack of a unifying diagnosis makes her complicated—a challenge for our family and for any health system, however advanced or well-resourced. This story is about my attempts to attain the care my daughter needed from the health system in the United Kingdom. It is, more generally, about the traveler’s eye and the value of seeing things as an outsider—about what I learned about a new country and my own by leaving and then returning home.

We moved to London, England, in January 2002 and lived there until the fall of 2005. During that time, I didn’t practice pediatrics as I had in the U.S. but worked instead as a physician-editor for the British Medical Journal (BMJ) Publishing Group. My two daughters were ages six and one-and-a-half when we moved to London and past the point of needing frequent immunizations and checkups.

In England, pediatrics isn’t considered primary care; it’s a specialty accessed through referral. A "health visitor" is the first stop for what we’d call well-child care in the U.S. Always a she in my experience, the health visitor is a nurse who visits a new mother and baby when they first come home from the hospital, and then every day for a week or so. She comes to the house and checks how breast-feeding is going and how the baby looks. She has a cup of tea or makes a cup of tea for a tired mom. She holds the baby for a while so that the mother can go to the bathroom or have a quick wash. It’s lovely. "As it should be," I thought. "Why don’t we do the same?" The health visitor provides nursing care, as well as a combination of monitoring, screening, lactation assistance, and reassurance—all of which are probably just what a new mother needs.

But a comforting presence wasn’t what I was looking for when I became concerned about my daughter Sandhya’s development just shy of her second birthday. I needed more than reassurance. I wanted someone who had seen enough children, with and without problems, to know the difference between normal and worrisome. I sought a professional who would tell me the truth with confidence, and if he or she said not to be concerned, I’d believe it.

I called our local clinic, or "surgery," to make an appointment for a check-up with the general practitioner (GP), the doctor who screened all initial complaints.

"A check-up for what, Mrs. Jain?" the receptionist asked me.

"Just a general exam...you know, a physical."

She didn’t know. After explaining that my daughter was indeed up-to-date on her vaccinations and wasn’t acutely ill, I finally blurted out that I had concerns about her development.

She gave me an appointment with Agnes, the health visitor, not the GP. I told myself that was OK, that Agnes was the one who saw all the normal children and would know if my daughter stood out. During the visit, Agnes wasn’t concerned about Sandhya’s development, but she took my worries seriously. She referred me to the GP.

As it turned out, the visit with the GP was only a way station to the community pediatrician. I tried to talk to the GP, mother-to-mother and doctor-to-doctor, but she barely looked at me and didn’t examine my daughter. She sat with her eyes turned toward Sandhya’s records on a computer screen. She scribbled out a note for me to take downstairs to the receptionist. They would call me with an appointment for a pediatric consultation.

Slowly, Slowly

 
ALL OF THIS TOOK MONTHS. By the time we saw the assigned community pediatrician, Sandhya was two-and-a-half, and my fears had solidified. It was time to do something. The words "early intervention" flashed before my eyes, and with them the importance of reaching her developing brain as soon as possible, in my mind before age three. Guiltily, I recalled the relief I used to feel when seeing a patient with developmental concerns who was older than three. It felt safe to let the schools take over then, as if something about that birthday converted a medical problem into an educational one and, therefore, no longer my domain or responsibility as a pediatrician. As a parent, though, nothing felt so dangerous as waiting.

When it finally arrived, the visit with the community pediatrician felt maddeningly casual. The pediatrician moved slowly and said little. She had Sandhya do a few developmental tasks, then was quiet afterward. She tried to weigh her, but when Sandhya protested and wriggled, she gave up. At one point, after a halfhearted attempt to measure her head circumference, she told me Sandhya’s head wasn’t growing. Outwardly calm, but with fury gathering in my fingertips, I put out my hand and asked for the tape measure. I measured Sandhya’s head myself. As I had suspected, it was normal.

The pediatrician didn’t do as I’d been taught in my training. She didn’t engage and befriend Sandhya, making her comfortable in order to more accurately assess her abilities. I lost confidence in her and asked to see a developmental specialist. She looked mildly insulted, but also as if she didn’t quite know what I was talking about. Still without a diagnosis, I took what I could from the visit: referrals for speech therapy and play therapy and another appointment in six months. Confused and in tears, I took my daughter home.

The pediatrician called me back. She asked me if I wanted to see the neurologist. I said yes, willing to see just about anyone who might offer experience or guidance.

I met with the attending neurologist and Caroline, her "registrar," at a nearby community hospital; I was told that Caroline was training in developmental pediatrics. Together they examined Sandhya thoroughly, the neurologist explaining and teaching as she worked. They undressed her, watched her walk, discussed her tone and musculature, and, finally, deemed her exam neurologically normal. They drew blood to screen for common causes of developmental delay. It all made sense to me. I left feeling grateful for the visit and thinking I had found someone, a team of two even, to take over Sandhya’s care.

I was wrong about that. My many attempts afterward to schedule follow-up appointments with the neurologist or Caroline were fruitless. Eventually, I received two polite letters in the mail: one with Sandhya’s normal lab results that ended with a note explaining that Sandhya, without a neurological condition, no longer qualified for services; and the other asking me to not contact Caroline again as she was in training and had no clinical practice of her own.

Copies of the letters must have echoed in Sandhya’s chart with the community pediatrician because she called me shortly thereafter. It was brave of her, I think, an acknowledgement that she knew I was unhappy with her care but that we were pretty much stuck with each other. She urged me not to miss the next appointment.

The National Health Service Reality

Top Slowly, Slowly The National Health Service... Enough From Both Sides Now

 
CLEARLY, I DIDN’T "GET" THE MEDICAL SYSTEM IN THE U.K. When I described my experience to a GP colleague at the BMJ, he was defensive. "Not all docs are like that," he said. "You got a bad apple."

Perhaps that was true. Or perhaps my daughter happened to have a condition relegated to receive one of the NHS’s so-called Cinderella services—diffuse and chronic, lacking an evidence base of proven treatments, largely hidden from public view, and neither prestigious nor well-funded and, therefore, unlikely to find many champions.

Still, this pediatrician was the one I had to go to within the NHS. There was no choice. Choice. The word glared in my head. Before moving to the U.K., I’d denounced the importance of choice in the U.S. health care system. It had frustrated me that so much of the health care debate in the U.S. revolved around choice rather than quality or access. "Patients don’t care about choice of health care," I’d said more than once. "They just want good health care. Choice and quality aren’t the same thing."

Part of my thinking had been that patients don’t always recognize quality when they see it. As doctors, we appreciate that a good bedside manner can signal quality to a patient but isn’t the chief ingredient in good patient care. As patients, we expect to be treated well by our doctors but are often willing to forgo a gentle demeanor in favor of technical expertise. Of course, it’s best to have both—the skillful eye and the compassionate manner, when one can choose—if one can choose. The lack of choice I was facing in the U.K. suddenly seemed very much like lack of quality.

I started making phone calls outside the NHS to find someone privately who would have the expertise and skills I sought. I called pediatric colleagues in the U.S. to ask for references to U.K. specialists. What I learned through a chain of many links was that for a developmental problem, it was better to stay within the NHS—it was directly linked with the speech therapy services in the schools, and I’d need an NHS doctor to access those services. In addition, private doctors and NHS doctors were often the same individuals; seeing them privately meant shortening the waiting time for an appointment without fundamentally changing the treatment. I also discovered that I couldn’t gain access to the preeminent children’s hospital, Great Ormond Street, within a reasonable time frame, regardless of ability to pay. We’d have had to wait more than a year to be seen. This was the system everyone had to live with, including me.

Enough

Top Slowly, Slowly The National Health Service... Enough From Both Sides Now

 
I PICKED UP THE PHONE AND AGAIN CALLED THE U.S. Several hours later I’d made an appointment with a developmental pediatrician at the Kennedy Krieger Institute of Johns Hopkins University. With barely a moment of guilty hesitation, I used my doctor connections to get an appointment quickly, within a month. Even without airfare, the visit would be expensive.

The appointment lasted more than two hours and included a medical workup and a thorough developmental evaluation (using tests I recognized). Sandhya’s diagnosis: neurodevelopmental delay, likely leading to learning disabilities and a small chance of borderline mental retardation—it was too early to tell. The developmental pediatrician recommended speech therapy at least once a week, occupational therapy for her fine-motor abilities and coordination, and a special educator—someone to figure out how Sandhya learns best and teach her accordingly.

For the next two years, Sandhya’s health and educational care were a combination of phone calls and flying back to the U.S. for medical advice, cursory appointments with NHS doctors, and trying to put into place the right services in London. Despite this duplicative and often extravagant regime, she still wasn’t getting what had been recommended. We advertised widely in London but couldn’t find a qualified occupational therapist who could see Sandhya regularly. She received limited speech services during school, but a single therapist covered all of the elementary schools in our region of London, leaving her too busy for the kind of individual attention Sandhya required. Sandhya’s school had an excellent academic reputation but was poorly equipped and unwelcoming for students with any sort of learning problem. There were no special education classrooms in any of the regular schools, and Sandhya was too young and her condition not severe enough for the few institutions devoted specifically to children with disabilities.

To my—admittedly biased—pediatric eye, Sandhya was affected just enough to benefit from services and not severe enough to be written off as permanently disabled. But according to the objective criteria of the NHS, she fell into a middle territory where both prognosis and treatments were uncertain and, therefore, not indicated.

Finally, we gave up. We left London and moved back to the U.S. to provide Sandhya with the medical care and educational services she needed.

From Both Sides Now

Top Slowly, Slowly The National Health Service... Enough From Both Sides Now

 
AS ANY PARENT WITH A SPECIAL-NEEDS CHILD quickly realizes, no system works perfectly to address the child’s individual needs, and all require extra efforts and vigilance on the part of the parents. But the approach is very different in the U.S. We intervene earlier, and it’s much easier to talk openly about disabilities with less fear and stigmatizing. And there are plenty of services—making it difficult to choose among them and fit them in while retaining some semblance of a normal childhood. There is a large and visible industry dedicated to addressing learning disabilities with services ranging from novel, innovative programs to quick-fix quackery. And all of it, effective or not, is expensive. Very little is covered by insurance, and then only partially and after much wrangling and paperwork. And although there is, indeed, greater attention paid to special education within the public school system relative to the U.K., without privately funded supplemental services, the schools provide substantially less than what’s recommended by health professionals.

In our case, the main difference between the U.S. and the U.K. is that here Sandhya has a doctor, someone who coaches us through the medical and educational system, translates the acronyms and terminology, and helps us sort through the options to find what is most likely to make a difference. Sandhya’s doctor gets to know her through both sick and well visits. We share the responsibility for her overall care; her doctor is not simply manning one station in our medical journey. We don’t see him very often, but he receives the letters and reports from the specialists and therapists, reads them, and keeps up behind the scenes with whatever is going on with her. When I call with a question, he calls me back and is acquainted with the latest chapter in her story. He doesn’t hesitate to question me, and he suggests things I haven’t thought of. We collaborate—he plays the role of the objective professional, and I can allow myself to be the subjective parent.

Living in the U.K., one frequently hears slights against all things American. In everyday conversations there are surly allusions to the politics, the brashness, and the self-involvement of the American people. And about the health care system, often frequent, disparaging references to the uninsured and scorn for the extravagance of highly technical, expensive, end-of-life care. Doctors in the U.K. also talk about the litigiousness of Americans and thank the stars that malpractice suits are rare enough in England not to be a constant worry. I admit I have often agreed. But once I began having difficulty with the U.K. health care system myself, these comments raised my hackles. I secretly began to think that the NHS could use a few lawsuits, and certainly more patients who expected high-quality health care.

It is entirely American, jockeying for health care. It is what we expect and espouse—that everyone advocate for him- or herself and, especially, for their children. But not everyone can do it, and not everyone does. To get the best care for our daughter, our family has drawn on every resource we have: our own education, insider medical knowledge and connections, and, most of all, financial resources—our own and our ability to access specialized services housed in corners of the public health and education system. I want to believe that patients like us, outspoken and questioning, with high expectations, lift the ceiling of what might be possible for all children with disabilities. I wonder, though, what might have happened to Sandhya in the U.S. were I not a physician, if I’d lacked the knowledge and confidence to advocate on her behalf, or if I’d had no health insurance to follow up on my suspicions about her development. When would her disabilities have been recognized? And how many grades could she have gone through in a strained school system before anyone realized that she couldn’t read? As a physician who has worked primarily in innercity, low-socioeconomic-status settings, I know that these questions are neither idle nor far-fetched and that children who are struggling with learning problems and other developmental disabilities routinely go undiagnosed and untreated.

I also shudder to think what might have happened if I didn’t have the background and wherewithal to pick selectively among treatments touted as effective. How many costly or even painful procedures might Sandhya have undergone before we knew something wasn’t working? How many different diets and types of therapy would she have endured? How much time would have been lost? For conditions like Sandhya’s without definitive treatments, any remedy in the marketplace can be advertised as potentially curative. Families with special-needs children are often overwhelmed, guilt-ridden, and vulnerable, even desperate, especially around the time of first comprehending the scope of their child’s problems. Whether or not they can afford it, they easily fall prey to all kinds of treatments that promise even a small hope of success.

I still believe in universal health care, in some ways more than ever. I realize that the NHS, despite being unable to provide the high standard of care my child needed, does provide a basic level of care for every child, on the basis of proven effectiveness and need instead of ability to pay. It is equal and just, the same for everyone. Moreover, I think that universal coverage might be the only way to close the gap between those who are savvy about medical care and can make the system work for them and those who have no choice but to take what they are given without expecting more.

But I have a different sense now of what high-quality care means and what I would hate to see lost as we in the U.S. move to a more uniform and leaner model of health care. It is the significance of the relationship between the doctor and the patient that, in the best of circumstances, can replace a sense of resignation and futility with action and hope. It is a collaborative and equal bond unlike anything I experienced in the U.K. and something so individualized—to the patient, the doctor, the family, and the condition—that it might never be possible to prove its worth.

Thinking back, I see how much of our journey has been characterized by the luxury of being able to choose, by an unspoken but absolute belief in patient choice. We chose to move to England, and we, like travelers who visit a quaint and provincial destination, could choose to leave when things no longer suited us. Even here in the U.S. we can choose among doctors and services until we are fully satisfied with the care we’re receiving. In our story, choice has been very much tied to quality, but only because the care available in the two countries was so disparate that choosing between them was critical. Making choices wisely depends on my fluency in the health care language, despite the uneasy knowledge that few others can do the same.

Perhaps one measure of success in our health care system will be when exercising choice dwindles in importance and the poorest patients of a pediatrician receive the same level of care as her own children receive.

Editor's Notes

 
Anjali Jain (AJain{at}cnmc.org) practices general pediatrics at Children’s National Medical Center. She is an assistant professor of pediatrics and health policy there and at the George Washington University; both are in Washington, D.C.

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