[Posted on 4 September, 2018 by Christopher Gillberg]
Lately there has been a lot of talk about “national guidelines” for a variety of different conditions, from diabetes to epilepsy and schizophrenia. In Sweden, such guidelines are established by The National Board of Health and Welfare.
The National Board of Health and Welfare has no national guidelines for neuropsychiatric disorders, but it does publish knowledge bases that in essence come to be viewed as guidelines. There are knowledge bases on autism and ADHD.
Different regions and counties discuss and implement “health care programmes” for everything under the sun. Administrators or health care personnel with previous clinical experience – with no current clinical activity or connection to what goes on “on the ground” – issue checklists and algorithms that all health care personnel are expected to follow. These sorts of programmes and flowcharts create a silo system where administrators and politicians decide that children with ADHD should be examined in one place and treated in another, while children with autism should be examined in yet another place and then treated at an entirely different institution with no real connection at all to the examining unit. Provided, of course, that they don’t also have an intellectual disability, in which case they need to be referred back to the examining unit, from which they are eventually shipped on to a third separate health care unit with an expected (and accepted) wait time of one to two years.
Other countries have the same situation, including Finland, Norway, Denmark, Scotland, England and Germany. Just look at all the guidelines being issued by NICE and SIGN.
All of this seems like madness when you sit down and look at it. Obviously, this is not how things should work. But our society is currently built around a silo system, and so the insanity continues.
There is overlap between autism and ADHD. For example: language and motor and behavioural and visual and hearing and obsessive-compulsive problems, anxiety and depression and autism and ADHD and DCD and eating disorders and chronic pain, computer addiction, sleeping problems and a tendency to stay at home. Maybe they are both “one and the same”. Maybe they are simply ESSENCE?
But there are no national guidelines for ESSENCE. Given what we know today, how could that be? Autism and ADHD overlap one another; the line between them is difficult to draw. Tics and OCD and ADHD and autism and eating disorders also overlap one another. What is what? Are they all the same? Who is qualified to diagnose these conditions? How are parents supposed to know where to go for help? How are adults battling with depression and anxiety know where to go for help?
The counties (and other such intermediate levels of government) have to go, as do the administrators. Create ESSENCE teams in primary care services (at least one in ten families are majorly affected by ESSENCE)! National guidelines for ESSENCE should be a top priority. Highly qualified doctors, psychologists, nurses, educators, speech and language therapists, occupational therapists, physical therapists – these should all be part of every health centre’s ESSENCE team. ESSENCE is the single greatest public health problem of our time. We need to tackle it in a way that makes sense: comprehensively, without any silos.
We want national guidelines for ESSENCE, not just for autism or ADHD or Tourette’s syndrome. Everything now!