ADHD Europe – the European patient organisation for people with ADHD – has launched a declaration on behalf of teenagers with ADHD. The declaration states that adult services in all European countries should offer suitable care for teenagers with ADHD who transition into adulthood, and to adults who are newly diagnosed. Andrea Bilbow is the president of the ADHD Europe organisation. I asked her about the importance of this declaration, and what she thinks that the consequences of the declaration will be.
Why was this declaration to urgently needed?
“Well it’s a bit of a long story that goes back 20 years. We started as organisations to raise awareness for ADHD in children, and to organise good services for these children. In most European countries there now are good services for children with ADHD.”
“However, these children are all becoming adults. For many young people across Europe as soon as they reach 18 years of age, they find that transition to adult services is very poor. In many cases treatment is withdrawn altogether leaving them vulnerable and at risk. And for those fortunate enough to receive the medication that they need for ADHD in adulthood, the medication is no longer reimbursed. This puts a huge burden on families who often have two or more children with ADHD and who do not have the resources to pay for the medication. Only in one or two countries in Europe are there official adult licences for the medication needed by adults with ADHD. Besides medication, young adults with ADHD do not have access to the services for ADHD in adult clinics, while they were receiving help in children’s services.”
Why is it so important that adults with ADHD receive suitable care?
“18 is a very vulnerable age. It’s the age when adolescents move up to Higher Education or start with their first jobs. Having ADHD, these young people are vulnerable to substance abuse, academic failure, job loss, becoming homeless or even crime. Furthermore, many of them will be starting to drive. Studies have shown that a significant number of young people with untreated ADHD will be involved in car accidents.”
“For years the EU has been trying to address the problem of school dropout in Europe, without success. Having medication for ADHD continue to be reimbursable and proper services for young adults with ADHD available would go a long way to reduce the number of young people who abandon education. So it is very, very important that they receive proper treatment and support. It’s probably one of the most important things you can do for this age group.”
People can now sign the declaration to show their support. What do you think will happen next?
“Well first of all, it’s amazing to see how much support we are receiving. The Declaration has been launched for only a week and already we have more than 500 signatures. More importantly, these signatures come from all over the world. But it also shows that what this declaration states is very much needed. Clearly, 18+ people across Europe are really struggling.”
“First, we will let this run for a couple of months to see how many signatures we can receive. We encourage professionals to also show their support: professors, doctors, medics, researchers, teachers, police. Anybody who has any stake in improving the lives of people with mental health problems. Once we have gathered this support, we will encourage the member countries to take it to their MEPs and try to get the required number of MEPs to sign the declaration in order for it to be discussed in the European Parliament. That is our mission. We will try to find out why in some countries they don’t want psychiatrists to diagnose and treat adults with ADHD. This is a human right that’s being breached.”
This October is ADHD awareness month. The perfect moment for the ADHD Europe patient organisation to bring out this Declaration and to raise awareness for this important issue. You can find, and sign, the Declaration at the website of ADHD Europe: http://www.adhdeurope.eu/adhd-europe/adhd-declaration-2016.html
The Declaration also shows the importance of research on ADHD. The CoCA project for example will investigate the societal costs of ADHD and comorbid disorders. Such data can assist in persuading governments about the importance of providing suitable care for those – children and adults- with ADHD.
This post was written by Jeanette Mostert. Jeanett is Dissemination Manager of the CoCA project.