My first two attempts to get evaluated for ADHD only resulted in promises that the psychologist would call me back. This never happened, and the only official indication that I was ever in contact with him/her was the invoices I received for a missed psychologist’s appointment some weeks later. I was not even sure I had ADHD. But ADHD was the only seemingly concrete condition that resembled what I had always experienced; concentration difficulties, inattention, anxieties, and lacking self-control.
My initial attempts to be evaluated for ADHD revealed an unwillingness, disinterest, or even sloppiness from the services I encountered regarding my neuro-psychological condition. Thus, rather than attempting to pull me (brutally) into the system, as Kafkaesque bureaucracies seem to do, I was being kept out of it. Being ‘left out’ of the iron cage of modern bureaucracy is not a new experience. Marginalized groups and individuals struggle to get into the system, (see the reactions to I, Daniel Blake and previous years’ debates over the precariat). But far from being a marginalised individual, I’ve been led to believe I represent a compound of various privileges: male, white, educated, healthy, heterosexual, from an urban upper-middle class, undivorced home. I have a loving girlfriend and do a fully funded Ph. D. at a major university. Usually, I am not one of ‘those people’ that the system routinely excludes. This difference is what makes all the difference.
ADHD (Attention Deficit Hyperactivity Disorder) is a controversial disorder. It is defined by varying degrees and combinations of chronic issues with inattention and hyperactivity and is diagnosed by ruling out other causes of these conditions. ADHD is often medicated with methylphenidate, (rather interestingly an amphetamine-like substance also popular as a ‘study-aid’ among Ivy-league students). Sceptics question whether ADHD even ‘exists’, or if it is just a short-cut for dealing with ‘lazy’, ‘unambitious’, or ‘problematic’ children, either ‘suffering’ from a working class background or a lack of discipline. Sweden’s National Board of Health and Welfare estimates that 4% of girls and 8% of boys have the diagnosis.
Six months after the failed attempts to get an evaluation, a change in circumstances meant that I started a regular commute between two cities. In this new setting I set out once again to get an evaluation, (in Sweden one has the right to seek care wherever one chooses, regardless of the municipality where one is taxed). This time, I actually got to see a psychologist and she took my problems seriously. The psychologist went through the initial screening. I filled out five or six forms. I get to describe my daily life in two-hour long interviews. The psychologist finds that I score high enough on the form which “captures 96% of patients with ADHD during childhood” and that I am “disabled in all six life spheres”. This means I should proceed to a full evaluation. The waiting time is supposedly “about two years – if they’ll take you – but they may think your life is working out well enough”. I ask about my rights to healthcare, as a citizen. “Well, in theory you have the right”, I am told by the psychologist, “but they are overloaded, so they must prioritize”. But before I leave she tells me that she “feels positive”, and that she will contact me whatever the outcome.
So, I expected a long wait for a full evaluation. There are no public statistics on how long the queues are in the different counties of Sweden. Legally, there is a guarantee of healthcare within 90 days, but while some counties exclude neuropsychological evaluations, others arguably initialize them symbolically only to fulfil the guarantee. Newspapers, documentaries, forums, and blogs are filled with angry and confused parents, who have waited years for an evaluation for their children. It is of course impossible to determine the truthfulness of these parents’ tales, and whether or not their experience was typical. However, the discourse that it takes “ages” to get a neuropsychological evaluation is well established. That is, if you stay within the public healthcare system.
A month after the screening I get a letter from the county authority. While I had been nervous, I had reminded myself that the psychologist was “positive”. The letter stated that I am not to be evaluated. A note from the psychologist informs me that I should contact the specialists who denied me the evaluation with any further questions. I am disappointed, but I want to know why I am being kept out. Calling the psychiatric clinic I am informed that they do not undertake evaluations of people who are not currently taxed in the county. Once again, I ask whether I have “the right to seek care wherever I desire” and, again, I am informed “yes, in theory, but we have to prioritize”. In effect, they never reviewed my screening. The bars of the iron cage were now excluding me from the system.
To seek an evaluation in a city where I am not taxed is a Catch 22. The wait for an evaluation in the city where I am taxed is said to be over three years. In three years time I may have no reason to be there, even part-time. In order to be taxed in the county where I am denied the evaluation would mean losing my housing near my work. The only other option is to “go private”.
Sweden is a public healthcare powerhouse. Private healthcare practitioners who operate outwith the regional health authorities are often viewed with some scepticism. For many people, seeking healthcare outside the public system is unthinkable. To pay a full (and steep) doctor’s fee seems illogical given that care is already paid for through taxes – so in effect private patients pay twice. Many would not even know where to look for a private practitioner in the first place.
The idea of ‘going private’ caused me to recall a conversation, five years earlier, with sociologist and associate professor Eva Kärfve, who was involved in a controversy over ADHD research in the early 2000s. She informed me, frankly, that “for 10 000 Swedish crowns (€1000), anyone can get an ADHD diagnosis and a ritalin prescription”. Now the questions started to emerge for me personally. A private alternative – could it be a serious option for me? What if nobody believes in the diagnosis, it doesn’t matter. A Ph.D. candidate getting a ritalin prescription to finish his or her dissertation is not unheard of.
This is where my privilege really sets in. First, I could afford a private evaluation. Many people would be lost on that account. Second, I can get access to both medical doctors and psychologists to ask questions about the process. I started to review the private practitioners advertising their services to undertake ADHD evaluations. Some reminded me of real estate agents, others actually seemed serious. Having dispatched emails to a number of earnest-seeming professionals, I got a swift response from one. Waiting is not my strong suit, and I also realized that seeking evaluation in a border city had benefits. The clinic, while working with Swedish patients, was based in neighbouring Denmark. Making use of a complex combination of EU law and Swedish healthcare regulations, I could be evaluated in Denmark, and send the bills to the local county that collects my taxes. Only one of the other practitioners even bothered to contact me, three weeks after I sent them my email. But finally, I was actually being evaluated, for the price of a couple of train tickets, and I would not have to wait for three years.
Through this process I started to question how many people who might benefit from an ADHD diagnosis would actually be able to acess, never mind get through this procedure. What initially may sound like mistakes, ended up in explicit exclusion from the public healthcare system – despite my legal right to it. For me, having ADHD means dropping out of things that get hard, because I have no idea how to focus and struggle. At the point of being explicitly denied an evaluation, I was about to give up. But, I had access to money, knowledge, and personal support which I doubt everyone could muster. I used these privileges to sidestep the system. Without these privileges, I would have been unable to squeeze through the bars of the cage.
About the Author: Jonas Bååth is a PhD candidate in sociology at Uppsala University, Sweden. He has no clue about medical sociology.
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The ADHD chronicles: Squeezing through the bars of the iron cage
by Jonas Bååth Jul 26, 2017My first two attempts to get evaluated for ADHD only resulted in promises that the psychologist would call me back. This never happened, and the only official indication that I was ever in contact with him/her was the invoices I received for a missed psychologist’s appointment some weeks later. I was not even sure I had ADHD. But ADHD was the only seemingly concrete condition that resembled what I had always experienced; concentration difficulties, inattention, anxieties, and lacking self-control.
My initial attempts to be evaluated for ADHD revealed an unwillingness, disinterest, or even sloppiness from the services I encountered regarding my neuro-psychological condition. Thus, rather than attempting to pull me (brutally) into the system, as Kafkaesque bureaucracies seem to do, I was being kept out of it. Being ‘left out’ of the iron cage of modern bureaucracy is not a new experience. Marginalized groups and individuals struggle to get into the system, (see the reactions to I, Daniel Blake and previous years’ debates over the precariat). But far from being a marginalised individual, I’ve been led to believe I represent a compound of various privileges: male, white, educated, healthy, heterosexual, from an urban upper-middle class, undivorced home. I have a loving girlfriend and do a fully funded Ph. D. at a major university. Usually, I am not one of ‘those people’ that the system routinely excludes. This difference is what makes all the difference.
ADHD (Attention Deficit Hyperactivity Disorder) is a controversial disorder. It is defined by varying degrees and combinations of chronic issues with inattention and hyperactivity and is diagnosed by ruling out other causes of these conditions. ADHD is often medicated with methylphenidate, (rather interestingly an amphetamine-like substance also popular as a ‘study-aid’ among Ivy-league students). Sceptics question whether ADHD even ‘exists’, or if it is just a short-cut for dealing with ‘lazy’, ‘unambitious’, or ‘problematic’ children, either ‘suffering’ from a working class background or a lack of discipline. Sweden’s National Board of Health and Welfare estimates that 4% of girls and 8% of boys have the diagnosis.
Six months after the failed attempts to get an evaluation, a change in circumstances meant that I started a regular commute between two cities. In this new setting I set out once again to get an evaluation, (in Sweden one has the right to seek care wherever one chooses, regardless of the municipality where one is taxed). This time, I actually got to see a psychologist and she took my problems seriously. The psychologist went through the initial screening. I filled out five or six forms. I get to describe my daily life in two-hour long interviews. The psychologist finds that I score high enough on the form which “captures 96% of patients with ADHD during childhood” and that I am “disabled in all six life spheres”. This means I should proceed to a full evaluation. The waiting time is supposedly “about two years – if they’ll take you – but they may think your life is working out well enough”. I ask about my rights to healthcare, as a citizen. “Well, in theory you have the right”, I am told by the psychologist, “but they are overloaded, so they must prioritize”. But before I leave she tells me that she “feels positive”, and that she will contact me whatever the outcome.
So, I expected a long wait for a full evaluation. There are no public statistics on how long the queues are in the different counties of Sweden. Legally, there is a guarantee of healthcare within 90 days, but while some counties exclude neuropsychological evaluations, others arguably initialize them symbolically only to fulfil the guarantee. Newspapers, documentaries, forums, and blogs are filled with angry and confused parents, who have waited years for an evaluation for their children. It is of course impossible to determine the truthfulness of these parents’ tales, and whether or not their experience was typical. However, the discourse that it takes “ages” to get a neuropsychological evaluation is well established. That is, if you stay within the public healthcare system.
A month after the screening I get a letter from the county authority. While I had been nervous, I had reminded myself that the psychologist was “positive”. The letter stated that I am not to be evaluated. A note from the psychologist informs me that I should contact the specialists who denied me the evaluation with any further questions. I am disappointed, but I want to know why I am being kept out. Calling the psychiatric clinic I am informed that they do not undertake evaluations of people who are not currently taxed in the county. Once again, I ask whether I have “the right to seek care wherever I desire” and, again, I am informed “yes, in theory, but we have to prioritize”. In effect, they never reviewed my screening. The bars of the iron cage were now excluding me from the system.
To seek an evaluation in a city where I am not taxed is a Catch 22. The wait for an evaluation in the city where I am taxed is said to be over three years. In three years time I may have no reason to be there, even part-time. In order to be taxed in the county where I am denied the evaluation would mean losing my housing near my work. The only other option is to “go private”.
Sweden is a public healthcare powerhouse. Private healthcare practitioners who operate outwith the regional health authorities are often viewed with some scepticism. For many people, seeking healthcare outside the public system is unthinkable. To pay a full (and steep) doctor’s fee seems illogical given that care is already paid for through taxes – so in effect private patients pay twice. Many would not even know where to look for a private practitioner in the first place.
The idea of ‘going private’ caused me to recall a conversation, five years earlier, with sociologist and associate professor Eva Kärfve, who was involved in a controversy over ADHD research in the early 2000s. She informed me, frankly, that “for 10 000 Swedish crowns (€1000), anyone can get an ADHD diagnosis and a ritalin prescription”. Now the questions started to emerge for me personally. A private alternative – could it be a serious option for me? What if nobody believes in the diagnosis, it doesn’t matter. A Ph.D. candidate getting a ritalin prescription to finish his or her dissertation is not unheard of.
This is where my privilege really sets in. First, I could afford a private evaluation. Many people would be lost on that account. Second, I can get access to both medical doctors and psychologists to ask questions about the process. I started to review the private practitioners advertising their services to undertake ADHD evaluations. Some reminded me of real estate agents, others actually seemed serious. Having dispatched emails to a number of earnest-seeming professionals, I got a swift response from one. Waiting is not my strong suit, and I also realized that seeking evaluation in a border city had benefits. The clinic, while working with Swedish patients, was based in neighbouring Denmark. Making use of a complex combination of EU law and Swedish healthcare regulations, I could be evaluated in Denmark, and send the bills to the local county that collects my taxes. Only one of the other practitioners even bothered to contact me, three weeks after I sent them my email. But finally, I was actually being evaluated, for the price of a couple of train tickets, and I would not have to wait for three years.
Through this process I started to question how many people who might benefit from an ADHD diagnosis would actually be able to acess, never mind get through this procedure. What initially may sound like mistakes, ended up in explicit exclusion from the public healthcare system – despite my legal right to it. For me, having ADHD means dropping out of things that get hard, because I have no idea how to focus and struggle. At the point of being explicitly denied an evaluation, I was about to give up. But, I had access to money, knowledge, and personal support which I doubt everyone could muster. I used these privileges to sidestep the system. Without these privileges, I would have been unable to squeeze through the bars of the cage.
About the Author: Jonas Bååth is a PhD candidate in sociology at Uppsala University, Sweden. He has no clue about medical sociology.