The Draft Australian ADHD Clinical Practice Points are out for public comment until 28 November 2011. (available at http://consultations.nhmrc.gov.au/open_public_consultations/a-d-h-d) Please make the effort to prepare a submission. Common-sense voices concerned about the welfare of children, and not the profit and convenience of adults, need to be heard right now. It is certain the ADHD industry will be very organised and use this opportunity to try and expand their already lucrative markets. They cannot be allowed to dominate this very important process. My detailed submission follows. Feel free to borrow at will.
Lobbying began over four years ago to have the development of guidelines and clinical practice points on Attention Deficit Hyperactivity Disorder (ADHD) put in the control of a multidisciplinary group without ties to the pharmaceutical industry. Now that a relatively conflict of interest free* Expert Working Group has released its draft Clinical Practice Points on ADHD in Children and Adolescents (Clinical Practice Points or CPPs) it is heartbreaking to see the minimal impact of the process to date.
I had hoped the Expert Working Group would provide decisive leadership on the issue. I had hoped the Expert Working Group would reject the American Psychiatric Associations DSMIV position that being disorganised, disliking homework, fidgeting, playing too loudly and losing toys and pencils are valid diagnostic criteria for a childhood psychiatric disorder. I had hoped the Expert Working Group would say that administering amphetamines and amphetamine like drugs is bad for children in the long run and must not happen. However, so far their work is very disappointing.
The next step in the process, considering public submissions, is crucial. It is a rare opportunity to fight-back and rein in Australia’s large and growing ADHD child prescribing rates. For the sake of Australian kids please be part of the process.
* For details of conflicts of interest see http://speedupsitstill.com/mental-health-minister-mark-butler-scores-8-10-open-book-approach-australian-national-adhd-guidelines-committee
Related Media- Sue Dunleavy, The Australian medicate ADHD kids or else parents told 21/11/2011 http://www.theaustralian.com.au/national-affairs/medicate-adhd-kids-or-else-parents-told/story-fn59niix-1226200652633 Update; On 23 November 2011 the NHMRC issued a media release denying that a failure to medicate may result in the intervention of child proection authorities ( http://www.nhmrc.gov.au/media/releases/2011/reassuring-parents-new-draft-adhd-clinical-practice-points-do-not-mandate-medica ). This is welcome, however, the statement ‘as with any medical intervention, the inability of parents to implement strategies may raise child protection concerns’ should never have been included in the CPPs.
Draft ADHD Clinical Practice Points – Built on Rotten Foundations
Submission by Martin Whitely MLA – Member for Bassendean Legislative Assembly of WA
Executive Summary and Recommendations
In fairness to the Expert Working Group given that their purpose ‘is to consider the Draft NHMRC ADHD Guidelines (2009) and develop clinical practice points to assist clinicians’ it was almost inevitable that their draft Clinical Practice Points (CPPs) would be significantly flawed. the Draft NHMRC ADHD Guidelines are a rotten foundation on which to build the Clinical Practice Points. The Draft Guidelines were prepared by a committee with extensive pharmaceutical company ties who relied primarily on group consensus and secondly on corrupted research. Furthermore the Guidelines Development Committee ignored compelling conflicting evidence and recommended the indiscriminate diagnosis of ADHD and use of pharmaceutical interventions.
Whilst there are modest improvements, the fundamental flaws of the Draft Australian Guidelines are apparent in the draft Clinical Practice Points. As a result, despite the efforts of the Expert Working Group, the draft Clinical Practice Points are riddled with inconsistencies and must be substantially rewritten. In addition the Draft NHMRC ADHD Guidelines must be rejected in total and removed from the NHMRC website.
However, not all of the flaws in the draft Clinical Practice Points are inherited from the Draft Guidelines. One of the most alarming statements in the Clinical Practice Points is original and states that ‘as with any medical intervention, the inability of parents to implement strategies may raise child protection concerns’. The dominant medical interventions for ADHD are stimulants. The implied threat is that a parent’s refusal to allow their child to be drugged with amphetamines or similar drugs may see the intervention of child protection agencies. As absurd as this sounds there is a US precedent. A number of American states have legislated to prevent child protection authorities and schools enforcing the ‘medication’ of children with psychotropic drugs against the wishes of their parents.
The core problem with the CPPs is that the Expert Working Group has failed to deal decisively with the fundamental issue; What is ADHD and is it a valid diagnosis? They are having an each way bet. Clearly they are concerned that a clinician diagnosing a child with ADHD can’t identify what is causing the problem behaviours and therefore has no idea what treatment will match the cause. Yet ultimately they validate the diagnosis of ADHD in children.
The Expert Working Group has recognised but placed insufficient weight on the absence of systematic, long term, evidence as to the safety and efficacy of ADHD medications. Similarly the Expert Working Group has fallen into the traps of;
- dismissing anything that is not a one size fits all treatment even though they acknowledge ADHD behaviours have multiple potential causes and
- requiring a higher standard of long term evidence from low risk treatments than that required from invasive inherently high risk treatments.
As it was with the Draft Guidelines significant evidence of long term harms arising from the use of stimulants has also been overlooked in the CPPs. There are also a number of statements in the CPPs that are either simply wrong, or present unproven hypothesis as fact.
The Expert Working Group has acknowledged that ICD10 is an alternative diagnostic framework. However, by validating the existence of discrete ADHD subtypes the Expert Working Group have explicitly validated the DSM and American psychiatric practice as the dominant clinical model for Australia. This is a significant issue as the application of the more conservative World Health Organisation criteria would see far fewer children diagnosed and ’medicated’. Furthermore locking Australia into DSMIV makes it even more likely we will continue to follow the APA on its next step towards the already discredited DSM5.
While the language of the CPPs is an improvement from the Draft Guidelines they allow too much discretion based on clinical preference and prejudice. The aim of the CPPs should be to achieve more consistent clinical practice. Unfortunately the current practice of diagnosing and prescribing for ADHD is so subjective that a diagnosis of ADHD tells us more about the adults (parents, teachers, doctors) in a child’s life, than it does about the child.
Consistency can only be achieved through clear boundaries, including the prohibition of diagnosing pre-schoolers and the use of ADHD medications for longer than 12 months. Consistency can also only be achieved if the clinicians authorised to diagnose and prescribe are trained appropriately in paediatric mental health. Finally clinicians need to display sufficient integrity and professionalism in their practice to resist easy options.
These CPPs are extremely important. In Australia in 2010 approximately 60,000 children received medication, primarily amphetamines and near amphetamines, to manage inattentive and hyperactive behaviours like fidgeting and playing too loudly. These children, all children, deserve better.
After reviewing the CPPs I recommend the following specific changes. Detailed argument fo each of the recommendations follows:
Recommendation 1- The Expert Working Group should recommend that the discredited Draft NHMRC ADHD Guidelines are rejected in total and removed from the NHMRC website.
Recommendation 2 – The CPPs should state that ADHD is not a useful diagnosis and that the term Unexplained Attention and Hyperactive Behaviour Difficulties is a far more accurate description of both the child’s behaviour and the clinicians understanding of its causes. Specifically the term Attention Deficit Hyperactivity Disorder should be abandoned and replaced with Unexplained Attention and Hyperactive Behaviour Difficulties for dysfunctionally inattentive and/or hyperactive/impulsive children when there is no identified cause of their problem behaviours.
Recommendation 3 – The Clinical Practice Points should be rewritten to state some alternative treatments (behavioural optometry, biofeedback, physical activity, etc.) may benefit a subset of children currently diagnosed ADHD, however there is at present insufficient evidence to evaluate their relative effectiveness.
Recommendation 4 – The Clinical Practice Points should state that although there is evidence that pharmaceutical interventions may help moderate ADHD symptoms in the short term, there is limited evidence in regard to their long term safety and efficacy. Furthermore the limited long term evidence available suggests significant long term harms and no sustained benefits. Therefore ADHD medications should only be used when extreme inattentive and hyperactive/impulsive behaviours represent a significant risk to the immediate welfare of the child (extreme hyperkinetic disorder) and their use must be restricted to short term interventions (never longer than 12 months).
Recommendation 5 – The Clinical Practice Points should be rewritten to explicitly reject the American Psychiatric Associations DSM process and state that the ICD-10 diagnostic criteria are to be met in full before a child is diagnosed with Unexplained Attention and Hyperactive Behaviour Difficulties (refer Recommendation 1)
Recommendation 6- The statement that ‘as with any medical intervention, the inability of parents to implement strategies may raise child protection concerns’ must be removed from the Clinical Practice Points.
Recommendation 7- The statement that ‘children meeting DSM IV diagnostic criteria for ADHD are described as typically having brain development that is inconsistent with age matched peers, for example, slower rates of cortical thinning’ is unsubstantiated speculation and must be removed from the Clinical Practice Points.
Recommendation 8- The statement that ‘ADHD also increases the risk of a range of adverse outcomes including educational, social, emotional and behavioural problems during childhood, and subsequent mental health, relationship, occupational, legal, and substance abuse problems in adult life’ is equivalent to saying dysfuntional behaviours cause dysfunctional behaviours and should be removed from the Clinical Practice Points.
Recommendation 9- The proposition that ‘developing an effective plan also involves educating the child/adolescent and his or her family and carers about the disorder and its impact on various domains of the child’s life’ has the potential to create self fulfilling prophecies of failure for many Australian children and should be removed from the Clinical Practice Points.
Recommendation 10- The CPPs should retain the question ‘Can pre-school children (under 6 years) be diagnosed with ADHD?’ but change the response to ‘NO. A diagnosis of ADHD is especially subjective amongst pre-school children as ADHD type behaviours are entirely normal behaviours for young children’.
Recommendation 11- The CPPs should include the statement that in line with manufacturers recommmendations, medications, including amphetamines and near amphetamines, should not be prescribed for ADHD under any circumstances for children younger than six years of age.
Recommendation 12 – The CPPs should include the statement Clinicians have a responsibility to identify where family dysfunction may be contributing to a child’s inattentive or hyperactive/impulsive behaviour and where appropriate to suggest supportive strategies.
Recommendation 13 – As ADHD type behaviours have many potential causes and there is nothing unique or explanatory about the label ADHD the CPPs should remove any reference to ADHD being a comorbid disorder.
Recommendation 14 – Remove the innaccurate and misleading statement ‘the rate of sudden death in patients taking methylphenidate or atomoxetine is below background rates’ from the CPPs.
Recommendation 15: The CPPs should state that ‘in order to give children at least as much protection from insufficiently trained diagnosticians and prescribers as adults, only child psychiatrists or paediatricians who have been assessed as having achieved specific mental health competencies should be able to diagnose and prescribe medications for the treatment of childhood mental health disorders including ADHD’.
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