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QUESTION 1

QUESTION:

I have a thought regarding the lack of knowledge among doctors about neuropsychiatric disorders. My stepson is approaching 30 and had been diagnosed with autism and intellectual disability since childhood. I feel that knowledge about autism spectrum disorder has advanced every year, and it is easy to find courses and lectures for his personal assistants (who these days have proper training) to take. But by comparison, people in health care services are much less knowledgeable. For example, getting a properly written doctor’s note is entirely essential for my stepson to get the assistance that he needs to be able to live a good life, but all the same he gets referred to a general practitioner who isn’t even knowledgeable enough to know how to approach him in the right way. Child and adolescent habilitation services are terrific, but are only available until the age of 18. After that, the equivalent for adults is Advice and Support/adult habilitation services – which don’t work at all. The only recourse left then is the local care centre. Children with diabetes have access to specialists for the rest of their entire lives; I think that the same should go for people with neuropsychiatric disorders.
What do you think about this – could you help educate general practitioners about this (rather large) group of people, or should there perhaps be a neuropsychiatric unit instituted in every county? By the way, I would be grateful for any tips you might have about doctors in Västerbotten with an advanced understanding of autism!

ANSWER:

I am one of the doctors at the GNC and I have received your question!
Many parents of young adults with disorders describe how difficult it is to get medical follow-up and help for their child after the age of 18. It is a major shortcoming of Sweden’s health care system that we lack established adult habilitation services that are equal to our child and adolescent habilitation services. Sweden used to have care doctors/consultants specialised in intellectual disability and other disorders. Nowadays there are very few adult habilitation doctors and the ones that do exist are often only consultants in the adult habilitation team who do not see patients personally. Knowledge about autism has increased significantly, but is not readily available to all areas of health care services. There is a great need for educational efforts! General practitioners after all have many patient groups and the field does constitute a specific medical subspecialty within child and adolescent medicine.
Does your stepson live in Västerbotten? I know that there is a centre for adult habilitation outside Umeå (Sävar). I can look into whether you might be able to go there! I do not know to what extent there are adult psychiatrists where you live and if your stepson has been in contact with any adult psychiatric clinic.
We have an adult psychiatrist working in Lund associated with the GNC, she works with adults who have the kind of disorders your stepson has. I can ask her whether she knows about Västerbotten and what chances you might have of getting in touch with adult habilitation/adult psychiatric services there.

ELISABETH FERNELL

 

 

Page Manager: Anna Spyrou|Last update: 10/10/2017
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