Fair diagnosis and treatment of ADHD
Fair diagnosis and treatment of ADHD
Why this petition matters
I am writing to plea for a change in policy regarding diagnosing and treating people with Attention-Deficit/Hyperactivity Disorder (ADHD) Inattentive Type. I personally call for an evaluation of the correct dosage of my medication and to change unjust restrictions placed on me by the Drugs of Dependence Unit (DDU). I am convinced that these changes are necessary to fulfill the fundamental social, economic, behavioural, health and safety requirements that people without ADHD take for granted. My overall goal is to be an asset to society, and I believe that the current protocol not only prevents this but also neglects the consideration of human rights.
The DDU restricted my dosage of methylphenidate for dispensing the medication too early and more than my proscribed dose, with the suspicion of abuse. They did not give me a warning, an opportunity to prove my innocence, nor any communication on the matter. The DDU now subjects me to:
· drug of abuse screening (a term I find prejudice in itself)
· collect my medication every three days
· attend my psychiatrist every two weeks
· and restrict a much-needed increased dose.
These requirements are humiliating, incredibly costly, time-consuming, and counterproductive (as I have no history of drug abuse and cannot work or care for my children on my current dose).
I am an academic, a loving father of two, with no interest in recreational drug use. However, I also have ADHD, mental health issues and Diabetes (type 1), which causes me difficulty living a productive life. I have apparent symptoms of ADHD:
· Difficulty following directions
· Difficulty staying on task
· Losing personal items
· Not paying attention to details
· Problems staying organized
· Short attention span
In my defence of the DDU’s accusations, I misplaced scripts and medication due to the mentioned symptoms above; I believe that a medication container was stolen from my car. Moreover, I was experiencing the disastrous trauma described below at the time, which compounded and escalated these symptoms. Therefore, misplacing scripts and medication is typical for me.
My symptoms have disastrous consequences on my life (physically, mentally, socially, professionally, and emotionally). These consequences include dismissal from nearly all employment positions, several car accidents, difficulty maintaining a functional life, and difficulty controlling my diabetes. Furthermore, these hindrances escalated due to a series of stressful and traumatic events surrounding the incident over the last five years. These events included my Ph.D., a marriage breakdown, deaths in the family, and raising children. I could have coped better through these traumatic events if I had been appropriately medicated. Instead, the acts of the DDU, in conjunction with these events, have quite literally ruined my life. I lost my job, and could not live without a carer when the department banned my medication for several months. Subsequently, I could not leave my bed, let alone live a fulfilling life.
My condition has had a severe to extreme functional impact on activities involving mental health functions when unmedicated. Notably, I still have these obstacles from late afternoon on my current dose. The activities affected include:
· self-care and independent living
· social/recreational activities and travel
· interpersonal relationships
· concentration and task completion
· behaviour planning and decision-making
In contrast, I could focus, stay alert and convey confidence during the brief period that I took enough medication to stay awake for 16 hours a day (70 mg of Ritalin). During this time, I saw how easy it was for humans to be productive and reach their goals. Despite having a high IQ, ambition, and strong work ethic, I have always struggled to reach my goals. Therefore, I could be an asset to society with this medication.
Stimulants are critically important to prevent the functional impacts ADHD has on my quality of life, but my life depends on taking them too. Doctors have alluded to the reason the DDU can ban stimulants so easily is the notion that they are not life dependent. However, my diabetes and subsequent physical health are also severely affected by my ADHD symptoms. These symptoms interfere substantially with the skills needed to manage this chronic medical problem successfully. Therefore, considerably more work is required to handle the condition with ADHD (Sanches et al. 2006). I have struggled with severe hypoglycaemia, and hyperglycaemia and have been admitted to the hospital on too little medication. This occurs because I forget to charge or refill my insulin pump, cannot adjust my dose, and cannot pay attention to early symptoms. On my current medication, I am exhausted and unable to focus in the late afternoon. Therefore, the issues mentioned still occur overnight. I see significant improvements in my glycaemic control on a dose of methylphenidate that allows me to function throughout my waking hours. The life-threatening consequences of poor glycaemic control are well known, and this control is dependent on stimulants.
Sure, other treatments exist to treat ADHD, and my family and I have spent considerable time and money exploring these options to little prevail. The methods I have tried include:
· Nonstimulant medications including different SSRIs, SNRIs, mood stabilisers, lithium, and atomoxetine
· Psychotherapies including psychological counselling, cognitive behavioural therapy, marital counselling, and family therapy
· Motivational, focus, and stimulus techniques including practising meditation, incantations, and affirmations; listening to music; and watching videos
I have also read tens of books to help with my symptoms, including books on:
· ADHD education
· impulsive behaviour
· time management
· behavioural and social issues
I have little success using the treatments and knowledge described without stimulants due to my inability to focus. Other medications show insignificant improvements too. Despite the lack of success, I have paid tens of thousands of dollars in medical expenses and participated in hours of therapy and consultations. Thus, fulfilling the requirements set by the DDU is unsustainable considering these contributions to support my ADHD, on top of those for other medical issues. Interestingly, I am remarkably effective on a suitable dose of stimulants complemented by the skills acquired by other treatments. Therefore, me using a higher amount of stimulants and dispensing more medication per collection should be the obvious solution. However, this is impossible with the current policy.
I am convinced that the lengths medical professionals must go to diagnose and treat ADHD patients also needs to change. Doctors exhibit an apparent exasperation from the futility, stress, or time this takes. I am convinced that consciously or subconsciously, reporting procedures cause medical professionals to avoid the diagnosis at the expense of patients with a sometimes-debilitating condition. I have had severe mental health issues for over a decade, which I believe doctors could have resolved if diagnosed earlier. As mentioned, I have obvious symptoms, yet practitioners never indicated ADHD as a possible cause for my issues during consultation. It was not until self-diagnosis that doctors could resolve these problems. As a member of ADHD support groups, I discovered that this is not uncommon. A lifetime of dealing with the condition is disheartening and soul-destroying for people like me, so a more officiant procedure must be used to diagnose patients.
Post diagnosis, obtaining the appropriate dose was even more stressful. It was approximately six months before I was given an even slightly therapeutic amount. The DDU banned this dose soon after, and I reverted to my normal state of severe depression and devastation. My current psychiatrist presently cannot discuss my mental health issues nor an increase to my dose of methylphenidate. The psychiatrist is too preoccupied with the procedures needed to write a prescription. I also believe my restriction has created a confirmation bias. In that, medical professionals believe that as I am being punished for abusing stimulants, I must be abusing stimulants. I need to be allowed to determine my therapeutic dose before it can be established that I am abusing it. However, I have not been given this opportunity. I can only imagine how much better my children, my family, and my life would be If I had been diagnosed with ADHD and treated with therapeutic dose months, years, or decades earlier. My physical and mental health; and my financial and professional situation depended on it.
I consider the current policies on diagnosing and treating people with ADHD as discrimination against human rights. Human beings should have the right to work, look after their children, and treat physical, social, and mental health issues (United Nations Assembly 1948). People dependent on section 8 medication also deserve to defend themselves before suffering the penalties (United Nations Assembly 1948). The DDU does not give ADHD suffers the same opportunities as non-ADHD sufferers. As a diabetic, I know how vital the appropriate medication is. I know how seriously government agencies would have considered similar problems related to diabetes and could have resolved them with adjusted insulin. Whether stimulants are controlled drugs or not should be negligible. They are just as crucial to livelihood as the best medication for patients of other conditions and should be ascertained just as efficiently. In my case, insulin and stimulants are equally necessary to sustain life. People with ADHD in other states do not suffer such severe penalties nor lengths to be medicated (e.g., Queensland). Why should they be given the opportunities to live a happy, healthy, and productive life that we do not? Furthermore, the current restrictions are not needed to comply with the Controlled Substances Act (1984). My health and others’ safety are more at risk without a therapeutic dose of a stimulant, as described above. I am convinced that the prescription of appropriate medication should be determined by the severity of impairment suffered and not just the risk of abuse.
I understand the problems caused by stimulant abuse and the need for control. Considering this, I still do not pose a risk, nor should the DDU need to screen me for abuse. I have had no short-term side effects from the medication:
(Firestone et al. 1998; Rappley, 1997)
Nor long-term symptoms:
· psychiatric symptoms
- schizophrenic symptoms
- manic-like states
- anxiety conditions, including panic states
(Kroft & Cole 1992; Schuckit 1995; Segal & Janowsky 1978)
· motor or behavioural symptoms:
- bruxism (grinding of the teeth)
- repeated touching
- stereotypic confusion
- disoriented behaviour
- obsessive-compulsive tendencies
- repetitive behaviours
(Schuckit 1995; Volavka 1995)
nor have I come close to acute toxicity and displayed:
· panic states
(Wender 1998; Segal & Janowsky 1978; Volavka 1995)
These should be the underlying factors when determining whether a patient abuses the medication. Furthermore, it is well established that adults with ADHD can benefit from the therapeutic effects of methylphenidate with minimum side effects (NIH 1998; Biederman 1998; Findling & Dogin1998; Wender 1998; Rappley 1997). Overall, I experienced much worse symptoms before doctors medicated me with stimulants.
The policy disadvantages people with ADHD who have a substance abuse problem, creating a paradox. In that, those that do have substance abuse problems are likely to need the medication more. Many people in South Australia with ADHD have gone years without the diagnosis, being proscribed stimulants or a dose they need to reduce ADHD symptoms. Therefore, they are forced to self-medicate as a coping mechanism. Patients are two-three times more likely to have a substance abuse problem without treatment (Lee et al. 2011; Biederman et al. 1995; Kollins et al. 2005). In contrast, there is no sign of an increase in substance abuse with prescribed stimulants (Chang et al. 2014); the risk is significantly lower (Wilens 2003). Further still, there are no recorded deaths from medicated methylphenidate in people with ADHD (Schelleman et al. 2011). Therefore, the DDU restricting patients with addiction makes it harder for them to quit more dangerous stimulants. I can only imagine how many people with methamphetamine addictions have undiagnosed ADHD. The DDU needs to consider the unfortunate fate of unmedicated people with ADHD when assessing the evidence and accusing someone of abusing stimulants. The lives of people with ADHD depend on it.
The correlation in the reduction of symptoms between treated and untreated patients is overwhelming (e.g., Harpin et al. 2016). People with ADHD are subjected to associated debilitating disorders:
· comorbid mood (e.g., depression, anxiety)
· disruptive behaviour disorders (oppositional defiant disorder and conduct disorder)
· neuropsychological deficits (e.g., verbal working memory)
· family problems (e.g., negative parent-child interactions)
· poor academic achievement
· social dysfunction (e.g., peer rejection)
(Biederman et al., 2010a, Lee et al., 2008, Owens et al., 2009)
And there is a need to give people with ADHD the opportunity to prevent such disorders. Adult ADHD patients’ quality of life suffers consequences, such as being less likely to finish university and having a nearly two times higher risk of divorce/separation (Biederman et al. 2006). In addition, they have a two-three times higher rate of substance abuse/cigarette smoking (Biederman et al. 1995; Kollins et al. 2005), frequent job changes (Biederman et al. 2006), and lower household incomes than adults without ADHD (Biederman et al. 2010b). Additionally, people with ADHD are more likely to self-harm and commit suicide (Bushe et al. 2013).
I emphasise the importance and urgency of changes to this policy. I do not know how much longer I can live under these restrictions and the overwhelming problems they cause. I can only function for a few hours each day. I am usually exhausted in the afternoon from a lack of dopamine and in the morning from poor glycaemic control. I also distribute additional functional hours to visit the pharmacy and medical facilities daily. Additionally, my parent’s mental health is degrading because of the time and money they spend on me in my state of mind. My confidence and self-esteem are diminishing the more I suffer through this.
I commend you for reading this letter despite the length. I feel obligated to include much detail and be the voice of others with ADHD in the state of South Australia. Many people with ADHD are not confident or educated enough to speak up despite suffering similar fates. Despite the length of this letter, I have neglected many hardships and injustices in its 3000 words. Therefore, I intend to continue fighting if necessary. I am devastated that my life is considered so insignificant. My children show strong signs of ADHD, and I refuse to let them experience my pain.
The DDU imposes restrictions that are unjust and inhumane. Further still, the DDU has not allowed defending myself, which is my right in a democracy. They are depriving me of a therapeutic dose of essential medication. The consequences of which are denying me a healthy and productive life. Most importantly, the costs of these actions are unsustainable for my family, and my children deserve their father in the best state I can offer. I admit the vital reason to control stimulants. However, the policy’s paradox is that patients with ADHD are more likely to abuse illicit drugs if deprived of this medication. Stimulants are a need, not a luxury, and should be treated as such. I propose the opportunity to obtain a higher dose if needed; and the ability to dispense a more significant number of tablets at a time.
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