ADHD Europe Contribution to the Green Paper

ADHD-Europe
contribution to the Green Paper on Mental Health - May 2006

ADHD-Europe
Contribution to the EC Green Paper
on improving the Mental Health
of the population
MAY 2006
Mental Health with ADHD?
Rachel, age 12, speaks for herself:
She has always voiced her own opinions and concerns surrounding her disablility and how the world and the
people she meets within it perceive her. She has struggled to gain acceptance and understanding and is always
keen to talk about her problems and these are the thoughts she has expressed to her parents:
• Why am I different?
• Why do I have this disability?
• Why do people talk about me and not to me?
• I don´t understand lots of things at school but feel unable to express this
• I can´t cope with how I feel sometimes and get very angry and stressed
• Why do I never get invited to meetings?
• I am not a mental case
• I am Rachel and I have needs and wants
• School wants to give me a detention because I forget my shoes or forget to do my homework
• I feel picked on and I feel I am made to feel like a troublemaker and lazy because of ADHD
• My sister calls me a troublemaker and headcase
• I am normal in every sense of the word, just my brain gets mixed up now and then ...
(Ref. 1 - Knowing me Knowing you: Diagnosis and early intervention 2002)
Rita Bollaert
Coordinator ADHD-Europe
Centrum ZitStil vzw
Heistraat 321
B-2610 Wilrijk
+32 473 61 72 79
rita.bollaert@zitstil.be
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contribution to the Green Paper on Mental Health - May 2006
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Introduction of ADHD-Europe
ADHD-Europe represents 27 organisations concerned with ADHD (patient, parent and adult advocacy groups)
from 18 European countries, who have been meeting and cooperating together since 2005 for the improvement
of the situation for those affected by ADHD.
As Markos Kyprianou, Commissioner for Health and Consumer, mentioned at the launch of the “Green Paper on
improving the Mental Health of the population” (Ref. 2 - Kyprianou, 2005, October), the input of advocacy and patient
groups is an essential aspect of the consultation process. Advocacy groups develop their strength and capacity
from the bottom up, generally having intimate knowledge about the issues and needs of vulnerable groups from
personal life experience. They are committed and passionate about their communities and the people they work
with who often confront difficulties regarding access to early and accurate diagnosis, effective treatment,
essential support networks and monitoring of therapy. Involvement of patient and advocacy groups results in
informed public opinion at national and European levels, realizing a bigger influence on multi-stakeholder
groups (Ref. 3 - Arnauts & Partners, 2005). Therefore ADHD-Europe, helping to build the capacity of individuals
affected by ADHD, increasing their empowerment, supporting the need for the realisation of the full potential of
their lives and being a expert ”watchdog”, is pleased to be given the opportunity to contribute to the Green Paper
on improving the Mental Health of the population.
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contribution to the Green Paper on Mental Health - May 2006
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I. ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD)
ADHD i s a c h r o n i c d i s o r d e r r e q u i r i n g l o n g - t e rm t r e a tme n t
Attention Deficit Hyperactivity Disorder (or ADHD) is defined as a developmentally inappropriate level of
inattention and/or hyperactivity-impulsivity that is present before the age of seven years.
ADHD is:
• frequent: 3 – 5 % of school-aged children; 1 – 3 % of the adults
• disabling (social, behavioural, educational, professional etc.)
• a burden on the individual, family and society
• complicated by additional problems in most cases
Ideally, early and accurate detection in conjunction with appropriate treatment of ADHD, support for the family
and interventions/accommodations within the educational and professional systems are critical for an individual.
The hyperactive or impulsive behaviours and attention deficit problems are often not in keeping with either the
intellectual abilities or the developmental stages of the individual. (Ref. 4 - European Interdisciplinary Network for ADHD
Quality assurance [EINAQ], 2004)
Remarks
It is interesting to note that, although the Helsinki conference (Ref. 5 - WHO European Ministerial Conference on Mental
Health; 2005) addressed issues of mental health of children and adolescents, ADHD, the psychiatric disorder most
often diagnosed in children and adolescent, is not mentioned in the EC Green Paper.
The Green Paper hopefully can stress the many different aspects in mental health conditions: illness, disability,
handicap, disease, disorder, taking into account the acuteness of the condition or its chronic life-long effects. We
would appreciate thus a more extensive list of conditions, including ADHD, be cited in the Green Paper, as
Annex II mentions only a limited range.
Many disabilities are disabling without being visible. This gives people the opportunity to hide their problems to
avoid unjustified dismissal, to avoid stigmatisation … But hiding these problems can create new stress factors,
leading to other mental health issues.
There are disparities across the European Union in regard to awareness, diagnosis, treatment and management
of ADHD. These differences are reflected in the lack of, and often outdated professional knowledge, the limited
access to medication, as well as few resources and social support. These discrepancies must be addressed.
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Wh a t a r e t h e c a u s e s o f ADHD?
ADHD is a neuropsychiatric disorder with a genetic risk (70-80 %), and is influenced by environmental factors.
Genetic tendencies for ADHD often interact with the environment in complex ways. (Ref. 6 - International Consensus
Statement on ADHD, 2002).
ADHD is multifactorial in is etiology. First of all there are some possible acquired biological factors related to
intra-uterine exposure to alcohol or nicotine, low birth weight and brain infections (e.g. encephalitis).
Modulating psychosocial factors such as family instability, parental mental health issues, poor competence in
parenting, and low socioeconomic status do not cause ADHD although they play an important role in its
outcomes often making the symptoms and associated problems worse (Ref. 4 - EINAQ, 2004).
B e s t c l i n i c a l p r a c t i c e f o r d i a g n o s i s a n d t r e a tme n t o f ADHD
Diagnosis should take place as soon as possible with the ideal age being 6-7 with screening and detection
already possible at kindergarten age. However, diagnosis may be undertaken up to any age. The screening and
the clinical diagnosis of ADHD by qualified health care professionals is based on a careful and complete review
of an individual’s history, overall patterns of behaviour and the symptoms of the disorder using the diagnostic
criteria of DSM-IV TR (Ref. 7 - American Psychiatric Association, 2000).
These careful assessments follow existing protocols and may also include the observations of a child’s parents
and teachers. Evaluation of other possible causes of inattentive or hyperactive behaviour, as well as common
coexisting conditions and comorbidities, including learning disabilities, substance abuse, psychiatric disorders,
depression, anxiety disorders and oppositional defiance disorder is also undertaken depending on the behaviour
and age of the individual.
A multimodal treatment programme must be individually tailored, continually monitored and optimised.
Accompanying psycho-education forms the basis of all treatments for ADHD. Another effective intervention
includes behavioural therapy for the individual and his or her family, in school as well as at home. In many
cases medication plays a central role in therapy.
(Ref. 4 - EINAQ, 2004).
(Ref. 8 - A healthy start to life: Mental health and disorders of children between 6 and 12 years old, 2005)
(Ref. 9 - Ralston & Lorenzo, 2004)
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Remarks
The Charter of Fundamental Rights of the European Union (Art. 35) provides the right for all members of
society to benefit from medical treatment. There is a real need to include also the educational and non-medical
approaches as essential components of the treatment for ADHD (Ref. 10 - Charter of fundamental rights of the European
Union, 2005).
It is commonly accepted that ADHD is under diagnosed and under treated in Europe; this being supported by
literature from the Netherlands and the United Kingdom which show problems with assessment, referral rates
and diagnosis. Scepticism regarding the disorder also exists. Treatment practices across Europe vary
considerably and health care professionals in some countries tend to be reluctant to prescribe medication even
though medication is available. In some countries medication is available but not reimbursed and in others it is
not available, necessitating “cross border shopping” for specialist assistance and prescriptions both situations
which increase the financial burden on families. Local medical culture, individual experiences and clinical
practice among many medical communities across Europe, positively or negatively, affect the care given to those
affected by ADHD (Ref. 9 - Ralston & Lorenzo, 2004).
In any case, it is crucial that children and families affected by ADHD receive the treatment they deserve and
need in order to lead as full and healthy lives as possible. To do this, a cultural change among healthcare
professionals and educators is a necessary first step. By providing continuing professional development and
further education to increase their awareness and knowledge about the diagnosis and treatment of ADHD, they
will be equipped with the skills and knowledge to improve the quality of care for children and adults.
Wh a t a r e t h e p o t e n t i a l l o n g - t e rm e f f e c t s
a n d t h e imp a c t o n s o c i e t y ?
Certainly, if not diagnosed or inappropriately diagnosed, the risk is that individuals receive no treatment
at all or inappropriate treatment. There is a plethora of evidence pointing to the likelihood that these
individuals are at very high risk of increased difficulty in achieving success in life as well as developing some, or
in some cases, all of the following:
• Emotional problems: low self esteem, depression (often leading to suicide)
Remark: it is noteworthy that ADHD is often one of the first causes of depression and often implicated
in instances of suicide. Because of this, psychiatrists must develop an in depth knowledge of ADHD in
order to thoroughly understand the issues surrounding the presenting symptomatology.
• Development of serious behavioural problems: risk taking behaviour, oppositional defiant and other
conduct disorders, substance abuse, anti-social behaviour, criminal behaviour
• Physical health problems: substance abuse, accidents due to attention deficit and impulsivity, stressrelated
illnesses, cardiovascular disease …
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• Educational problems: poor academic performance due to underachievement and/or learning
disabilities resulting in school failure; behavioural problems often leading to suspension (sometimes
unjustified); leaving school early etc.
• Relationship problems: increased conflict at home between parents and/or siblings, difficulties with
peers and/or colleagues, lack of or poor development of social skills, higher rates of marital difficulties
and/or divorce etc.
• Employment issues: unemployment, frequent change of employment, frequent job loss due to
behaviour (often unjustified), inadequate performance on the job …
• Increased cost burden for society and individuals as a result of accidents, insurance claims,
prolongation and increased complexity of treatment …
In most cases there is a chain reaction in the effects of ADHD on an individual with ensuing comorbidities
developing. Too often social exclusion results from an accumulation of the issues related to ADHD.
Remarks
There are different outcomes possible in the adulthood of people affected by ADHD.
1. Some adults are able to manage their daily lives successfully. They are capable of realizing the full
potential of their lives often aided by typical ADHD-characteristics becoming their strength (e.g.
creative and artistic ability, entrepreneurial ideas, dynamism etc.). If diagnosed and treated
appropriately, there is an optimistic perspective that their health and quality of life will be maintained.
2. Many adults affected by ADHD have to deal with problems on the social and psychological level, but
they manage to cope, due to a lot of family support, community support and other resources depending
on where they live within Europe.
3. Other adults are confronted with profound social and psychiatric problems, not able to cope or to
compensate for their impairment. This is the target group for whom the mental health issues are so
important.
Untreated or inappropiately treated ADHD causes significant loss and creates excessive burden and expense
to the health, economic, social, educational, as well as to the criminal and justice systems.
Although more health economic research needs to be done on the increased costs to society, it is known that
early intervention - diagnosis, appropriate treatment and adequate support - can improve the individual’s
prognosis and thus will likely have a down stream cost-saving impact for governments.
(Ref. 11 - Controlling the diagnosis and treatment of hyperactive children in Europe, 2003)
(Ref. 12 - Biederman & Faraone, 2005)
(Ref. 13 - De Ridder & De Graeve, 2006)
(Ref. 14 - Olesen., Baker, Freund, di Luca, Mendlewicz, Ragan, & Westphal, 2005)
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Wh o i s i n v o l v e d ?
Not only do children and adults with ADHD suffer, but also those persons in their immediate surroundings are
affected and have to deal with the impact and outcomes of ADHD (Ref. 15 - Without Boundaries - The impact of ADHD on
children and their families, 2005). Partners, parents and siblings deal with the effects of ADHD at home, school
workers and friends cope with it during school time, colleagues and employers deal with it at work. In fact the
whole community is involved (Ref. 8 - A healthy start to life: Mental health and disorders of children between 6 and 12 years old,
2005).
Especially for partners, parents and siblings, living with someone suffering from ADHD can create a tremendous
mount of stress which often leads to their own depression or substance abuse. (Ref. 16 - Barkley, 2000)
As there is a genetic component for ADHD (70 – 80 %) and if one or both of the parents are affected, the risk for
their children to have ADHD is high. The family situation thus becomes more complicated and difficult. Often
the parents may require treatment themselves in conjunction with parenting classes and social support in
bringing up their children.
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II. CONCLUSIONS AND SUGGESTIONS
The priorities for the target group affected by ADHD are:
• Promoting health for the group and their social environments
• Reducing the burden of the disorder by adequate prevention, early diagnosis and appropriate treatment
and
• Addressing stigma, discrimination and social exclusion while promoting human rights and dignity.
We want to stress that these topics were emphasised in the treaty of Maastricht establishing the European
Community (Ref. 17 - Consolidated version of the treaty establishing the European Community, 2002). With regard to the
European Charter of Fundamental Rights, ADHD-Europe cites the existence of the right to the integration of
persons with disabilities: “The Union recognises and respects the rights of people with disabilities to benefit
from measures designed to ensure their independence, social and occupational integration and participation in
the life of the community” (Ref. 10 - Charter of Fundamental Rights of the European Union 2005).
The major points of view expressed in this contribution to the Green Paper on Mental Health are also supported
by the European Charter of Patients' Rights. Relative to the active role of citizenship, the right to perform
advocacy activities and also the right to participate in policy-making in the area of health are central to ADHDEurope’s
activities (Ref. 18 - European Charter of Patients' Rights, 2002). Other important rights cited are:
• Right to Preventive Measures (1)
• Right of access (2)
• Right to information (3)
• Right to Respect of Patients’ Time (7)
• Right to the Observance of Quality Standards (8)
• Right to Personalized Treatment (12)
• Right to Compensation (14)
Support for a European framework on ADHD is essential
Raising awareness and sharing good practices results in the improvement of services across all sectors for those
affected by ADHD in Europe; this will avoid the reinvention of the wheel, cascade the pressure on national and
European policy levels, build capacity of advocacy groups and empower individuals.
It is necessary that the predominantly conservative cultures and attitudes across Europe be recognised as limiting
factors for increasing public and professional knowledge about ADHD. Awareness campaigns are needed to
encourage health care professionals, educators, the media and parents to collaborate, ensuring that affected
children and adults receive appropriate diagnosis, treatment and monitoring. In this regard, although ADHD falls
under the umbrella of mental health and, because of the social stigma associated with ADHD, there are severe
potential consequences for children, their families and for society. The high rate of co-existing pathological and
developmental problems, negatively affected school careers and the underlying social problems lead ADHDEurope
to recommend that ADHD requires the development of it’s own very specific framework and initiatives
for action in the field of mental health (Ref. 19 - National Institute for Clinical Excellence, 2006).
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Within this framework ADHD-Europe will develop strategies to meet the following objectives of the European
Union:
• Increased knowledge, awareness and understanding about ADHD using a multi-sectoral approach at
all levels to improve acceptance including:
o the general public (includes parents, siblings, partners)
o specific focus at all levels of the education sector
o health care professionals
o social care services
o policy and decision makers
o justice and law
o the media (Ref. 20 - ADHD: The hope behind the hype - International media reporting guidelines on Attention
Deficit Hyperactivity Disorder, 2003).
• Improvement of coherence and communication between health care professionals concerned with
ADHD. This objective is important not only for the individual health, but should also help to address
issues surrounding social exclusion and marginalisation.
• Emphasis on the responsibility of society at large with regard to promoting the social integration and
inclusion of individuals with ADHD thereby reducing stress and improving the quality of life for
everyone.
• Increased financial investment in the educational and health care sectors is essential to support mental
health in Europe. This investment is a priority across the lifespan, particularly in early childhood, in
order to prevent the negative impact and potential long term health care burdens resulting from
unrecognised and under treatment of ADHD (Ref. 5 - WHO European Ministerial Conference on Mental Health,
2005).
• Development of concrete actions such as educational and media campaigns to combat stigma and
discrimination experienced by those affected by ADHD (Ref. 21 - U.S. Department of Health and Human
Services, 1999).
• Improvement in the equity of access to diagnosis and appropriate therapy for all.
• Increased knowledge and awareness about ADHD in adults in order that they receive support and
treatment for the primary cause of their mental health problems and not only for their secondary
disabling symptoms (e.g. alcohol abuse, depression, etc.).
• Provision of research funding through the 7th Framework Programme for:
o Creation and development of an EU-wide network and database - to improve the quality
and availability of diagnostic services and evidence-based therapies for ADHD in the Member
States.
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o Translational and social research - urgently needed for the benefit of individuals and society
as a whole and must engage all stakeholders in the sphere of mental health, particularly in
relation to ADHD.
o Health economics and outcomes research – essential to begin to understand the
ramifications of the under diagnosis and under treatment of ADHD
• The promotion of mental health and the reduction of the burden of mental illness must grow
qualitatively and quantitatively:
o for the children:
- by support during the school age years
- by improving parental skills
o for the adults:
- by improving work accommodations
- by raising awareness
- by decreasing the impact of comorbidities
Knowing me, knowing you, a European project funded by the European Social Fund, evaluated and
identified reasons why ADHD leads to social exclusion for adults. Unfortunately, the national ADHD
associations in the Member States were unable to follow up proposed initiatives of the project due to
lack of resources (Ref. 22 - Knowing me Knowing you: Curriculum for our future, 2002). In all aspects this report
highlighted the urgent need for action and support for social inclusion of those persons affected by
ADHD.
In conclusion we want to stress one of the major Recommendations of the Meeting of Minds European Citizens’
Deliberation on Brain Science that is applicable to all those persons affected by ADHD:
“We recommend promoting the integration of and tolerance towards children and adults with
psychiatric or neurological conditions in their homes and neighbourhoods, and at school and
work. The government has to provide the necessary resources to achieve this in a constructive
way and should enlist the help of specialists” (Ref. 23 - The public presentation of the European Citizens’
assessment report at the European Parliament, 2006).
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ANNEX I. REFERENCES
1. Knowing me Knowing you: Diagnosis and early intervention. (2002). An ADHD project funded by the
European Commission: Second report. Denmark.
2. Kyprianou, M. (2005, October). Towards a strategy on mental health for the European Union. Launch
of Green Paper on Mental Health - European Commission. Luxembourg. Retrieved March 2, 2006 from
http://europa.eu.int/comm/health/ph_determinants/life_style/mental/green_paper/mental_gp_en.pdf
3. Arnauts & Partners. (2005, April). Workshop Report: Patient Advocacy, Encouraging Dialogue and
Improving Health Outcomes. Berlin.
4. European Interdisciplinary Network for ADHD Quality assurance (EINAQ). (2004). What is ADHD?
Retrieved March 2, 2006 from http://www.einaq.org/adhd.php3
5. WHO European Ministerial Conference on Mental Health. (2005, January). WHO mental health action
plan for Europe: Facing the challenges, building solutions. Helsinki, Finland. Retrieved March 2,
2006 from http://www.who.dk/Document/MNH/edoc07.pdf
6. International Consensus Statement on ADHD. (2002). [Electronic version]. Clinical Child and Family
Psychology Review. 5:2, 89-111.
7. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders - Text
revision (DSM-IV TR). Washington, DC: Author.
8. A healthy start to life: Mental health and disorders of children between 6 and 12 years old. (2005).
World Federation for Mental Health: World Mental Health Day. Retrieved March 2, 2006 from
http://www.wfmh.org/documents/WHDR606.pdf
9. Ralston, S. & Lorenzo, M. (2004). Attention-Deficit Hyperactivity Disorder Observational Research in
Europe (ADORE). European Child and Adolescent Psychiatry [Supplement 1]. 36, 36-42.
10. Charter of Fundamental Rights of the European Union. (2005). Official Journal of the European
Communities. Retrieved March 2, 2006 from http://www.europarl.eu.int/charter/pdf/text_en.pdf
11. Controlling the diagnosis and treatment of hyperactive children in Europe. (2003, March). Council of
Europe Meeting of Minister’s Deputies: Appendix 26 (Item 6.4) - Reply to Parliamentary Assembly
Recommendation 1562. (Brussels, Belgium). Retrieved March 2, 2006 from
http://cm.coe.int/stat/E/Decisions/2003/833/d06_4x26.htm
12. Biederman, J. & Faraone, S.V. (2005, May). Economic impact of adult ADHD. Program and abstracts
of the American Psychiatric Association Annual Meeting. Atlanta, Georgia.
13. De Ridder, A. & De Graeve, D. (2006). Healthcare use, Social Burden and Costs of Children With and
Without ADHD in Flanders, Belgium. Clin Drug Invest. 26 (2), 75-90.
14. Olesen, J., Baker, M., Freund, T., di Luca, M., Mendlewicz, J., Ragan, I. & Westphal, M. (2005).
European Brain Council: Consensus document on European brain research. [Electronic version].
Journal of Neurology, Neurosurgery and Psychiatry. Retrieved March 2 2006 from
http://jnnp.bmjjournals.com/cgi/rapidpdf/jnnp.2006.089540v1.pdf
15. Without Boundaries - The impact of ADHD on children and their families. (2005). World Federation for
Mental Health: Special Projects Related to Mental and Physical Health. Retrieved March 2, 2006 from
http://www.wfmh.org/documents/WHDR606.pdf
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16. Barkley, R. A. (2000). Taking Charge of ADHD: The Complete, Authoritative Guide for Parents (Rev.
ed.). New York. Guildford Press.
17. Consolidated version of the treaty establishing the European Community. (2002). Official Journal of the
European Communities. Retrieved March 2, 2006 from http://europa.eu.int/eurlex/
lex/en/treaties/dat/12002E/pdf/12002E_EN.pdf
18. European Charter of Patients' Rights. (2002). Active Citizenship Network. Retrieved March 2, 2006
from http://www.activecitizenship.net/health/european_charter.pdf
19. National Institute for Clinical Excellence (NICE). (2006). Attention deficit hyperactivity disorder
(ADHD) - methylphenidate, atomoxetine and dexamfetamine (review) (No. 98). Retrieved April 5, 2006
from http://www.nice.org.uk/page.aspx?o=TA098
20. ADHD: The hope behind the hype - International media reporting guidelines on Attention Deficit
Hyperactivity Disorder. (2003). World Federation for Mental Health. Retrieved March 2, 2006 from
http://www.wfmh.org/aboutus/initiatives/ADHDguidelinesEnglish.pdf
21. U.S. Department of Health and Human Services. (1999). Mental Health: A Report of the Surgeon
General: The roots of stigma. U.S. Department of Health and Human Services: Substance Abuse and
Mental Health Services Administration, Center for Mental Health Services, National Institutes of
Health, National Institute of Mental Health. Retrieved March 2, 2006 from
http://www.surgeongeneral.gov/library/mentalhealth/chapter1/sec1.html#roots_stigma
22. Knowing me Knowing you: Curriculum for our future. (2002). ADHD Project funded by the European
Commission: Third report. Denmark.
23. The public presentation of the European Citizens’ assessment report at the European Parliament.
(2006, January). Meeting of Minds: European Citizens’ Deliberation on Brain Science. Brussels,
Belgium. Retrieved March 2, 2006 from
http://www.meetingmindseurope.org/europe_default_site.aspx?SGREF=14&CREF=5440
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ANNEX II. DETAILS OF SPECIFIC REFERENCES USED IN THE ADHD CONTRIBUTION TO THE
EC GREEN PAPER ON IMPROVING THE MENTAL HEALTH OF THE POPULATION
Reference 3: Arnauts & Partners. (2005, April). Workshop Report: Patient Advocacy, Encouraging
Dialogue and Improving Health Outcomes. Berlin.
Transparency – The Key to Successful Partnerships
Establishing partnerships with different healthcare stakeholders, including other patient groups, professional
organisations, politicians, regulators, researchers and the pharmaceutical industry, is very important not only to
have a greater impact at national and international levels but also to influence stakeholder groups amongst
which outdated paternalistic attitudes may still persist.
Reference 5: WHO European Ministerial Conference on Mental Health. (2005, January). WHO mental
health action plan for Europe: Facing the challenges, building solutions. Helsinki, Finland. Retrieved
March 2, 2006 from http://www.who.dk/Document/MNH/edoc07.pdf
We endorse the statement that there is no health without mental health. Mental health is central to the human,
social and economic capital of nations and should therefore be considered as an integral and essential part of
other public policy areas such as human rights, social care, education and employment. Therefore we, ministers
responsible for health, commit ourselves, subject to national constitutional structures and responsibilities, to
recognizing the need for comprehensive evidence-based mental health policies and to considering ways and
means of developing, implementing and reinforcing such policies in our countries. These policies, aimed at
achieving mental well-being and social inclusion of people with mental health problems, require actions in the
following areas:
…
iv ... offer targeted support and interventions sensitive to the life stages of people at risk, particularly the
parenting and education of children and young people and the care of older people; …
Reference 8: A healthy start to life: Mental health and disorders of children between 6 and 12 years old.
(2005). World Federation for Mental Health: World Mental Health Day. Retrieved March 2, 2006 from
http://www.wfmh.org/documents/WHDR606.pdf
Recommendations
• Diagnosing disorders such as ADHD early in the child’s life is essential. Untreated ADHD, as well as other
disorders, is often associated with likely higher rates of substance use, conduct problems and delinquency,
school failure, and other adverse long-term outcomes. Behavioural therapies and certain medications can help
control the symptoms of this disorder.
• Parents should be partners in the treatment process for any mental distress in their children and should work
with the child’s doctor in developing a treatment plan.
• Often the school must be a partner in the treatment of children, especially in areas such as learning
disabilities.
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Reference 9: Ralston, S. & Lorenzo, M. (2004). Attention-Deficit Hyperactivity Disorder Observational
Research in Europe (ADORE). European Child and Adolescent Psychiatry [Supplement 1]. 36, 36-42.
Conclusions:
• Reported results suggest that patients improved from the T1 – T2 data collection points using
instruments collecting information on: number of ADHD symptoms, global functioning, emotional
problems, conduct problems, self-esteem, risk taking behaviours, academic performance and peer
relations.
• While this improvement could be associated with many factors, the greatest improvement was shown in
patients prescribed pharmacotherapy or combined with psychotherapy.
Reference 10: Charter of Fundamental Rights of the European Union (2000/C 364/01). (2005). Official
Journal of the European Communities. Retrieved March 2, 2006 from
http://www.europarl.eu.int/charter/pdf/text_en.pdf
Article 26
Integration of persons with disabilities
The Union recognises and respects the right of persons with disabilities to benefit from measures designed to
ensure their independence, social and occupational integration and participation in the life of the community.
Reference 11: Controlling the diagnosis and treatment of hyperactive children in Europe. (2003, March).
Council of Europe Meeting of Minister’s Deputies: Appendix 26 (Item 6.4) - Reply to Parliamentary
Assembly Recommendation 1562. (Brussels, Belgium). Retrieved March 2, 2006 from
http://cm.coe.int/stat/E/Decisions/2003/833/d06_4x26.htm
3. The issues covered by the Recommendation were the subject of a meeting which the Pompidou Group held in
Strasbourg on 8-9 December 1999 and which was attended by specialists from 15 European countries, the
United States and the World Health Organisation (WHO). The proceedings of the seminar were published as
“Attention deficit/hyperkinetic disorders: their diagnosis and treatment with stimulants”.
Attention Deficit / Hyperkinetic Disorders: their diagnosis and treatment with stimulants -
Proceedings, Strasbourg, December 1999
The Committee of Ministers considers that it is of utmost importance that parliamentarians, health care
workers, teachers, parents and the general public, can obtain accurate and reliable information on the
illnesses and on the treatments available. In particular , it takes the view that it is important to improve
information to teachers and parents so as to facilitate children’s access to the care they need and are
entitled to and so as to avert dangerous misuse of the drugs in question. It draws attention to the
recommendation made at the above-mentioned 1999 meeting: “There should be a regulatory
mechanism to ensure that messages aimed directly at the consumer on ADHD/HKD by drug
manufacturers or distributors are truthful and balanced, and do not contain misleading or unverifiable
statements or omissions likely to induce the inappropriate prescription of psychostimulants”.
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4. The Committee of Ministers agrees with the Pompidou Group that, some of the points raised in the
Recommendation are at variance with the views held by the vast majority of the scientific community and that
they are dangerously close to certain well-known theories which the “Church of Scientology” has promoted for
some time but which do not stand up to serious scientific scrutiny. The Pompidou Group states that these
theories are not only without any scientific basis but, if acted upon, would pose serious health risks to the
children in question by depriving them of appropriate treatment.
5. Among these theories, the central one plays down - indeed, disputes - the classification of attention
deficit/hyperactivity disorder and hyperkinetic disorder (ADHD/HKD) as illnesses. Yet the overwhelming
medical consensus is that, though difficult to diagnose, these disorders not only exist but are a serious lifelong
handicap requiring multidisciplinary assessment and treatment by various methods, including drugs.
…
Lastly the Pompidou Group takes the view that there is a need for much more training and in-service training
for doctors involved in the diagnosis and treatment of ADHD/HKD. In its view, only doctors with sufficient
training for this should have the right to make diagnoses, prescribe the necessary effective drugs or engage in
other aspects of the complex treatment of these disorders.”
Reference 13: De Ridder, A. & De Graeve, D. (2006). Healthcare use, Social Burden and Costs of Children
With and Without ADHD in Flanders, Belgium. Clin Drug Invest. 26 (2), 75-90.
Conclusions:
• Children with ADHD induce a significantly higher cost than their siblings.
• ADHD causes a huge financial burden to parents and to the government.
• The social burden of ADHD cannot be ignored.
Reference 14: Olesen, J., Baker, M., Freund, T., di Luca, M., Mendlewicz, J., Ragan, I. & Westphal, M.
(2005). European Brain Council: Consensus document on European brain research. [Electronic version].
Journal of Neurology, Neurosurgery and Psychiatry. Retrieved March 2 2006 from
http://jnnp.bmjjournals.com/cgi/rapidpdf/jnnp.2006.089540v1.pdf
Concluding remarks
The European Brain Council has devised a three-step strategy to support brain research in Europe. Our first
initiative was to calculate the burden and cost of brain disorders in Europe. Studies have revealed that brain
disorders account for 35 % of the total burden of diseases in Europe, and that they cost an enormous amount of
money—approximately €400 billion per year.
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Reference 15: Without Boundaries - The impact of ADHD on children and their families. (2005). World
Federation for Mental Health: Special Projects Related to Mental and Physical Health. Retrieved March
2, 2006 from http://www.wfmh.org/documents/WHDR606.pdf
What Advocates Can Do
The results of this research show how each of us can make a difference to the lives of those with ADHD.
Parents of children with ADHD have a very tough time and often face barriers to seeking medical advice. With
accurate information, parents are empowered to demand appropriate medical attention from healthcare
professionals.
Patient groups, such as the ones involved in this survey, and The World Federation for Mental Health can
provide practical advice and assistance to parents.
Healthcare professionals need to be better at listening to parents' concerns and to be open to the possibility of
ADHD. Children need to be referred for diagnosis as early as possible to minimise the disorder's impact.
Governments have to recognise and place ADHD on their national health agenda to ensure that children have
timely access to care. Similarly, educators must work together with parents to ensure that children receive the
care they need.
The media have a responsibility to reverse the myths that surround ADHD and ensure that accurate facts are
presented to their audiences. The media can play a vital role by creating awareness of ADHD and the
impairment it can cause the child, their family, and society in general, if unmanaged.
There is a great need to raise public awareness and understanding of ADHD to help combat the prejudices
families face.
Reference 17: Consolidated version of the treaty establishing the European Community. (2002). Official
Journal of the European Communities. Retrieved March 2, 2006 from http://europa.eu.int/eurlex/
lex/en/treaties/dat/12002E/pdf/12002E_EN.pdf
Article 152 PUBLIC HEALTH
A high level of human health protection shall be ensured in the definition and implementation of all Community
policies and activities.
Community action, which shall complement national policies, shall be directed towards improving public health,
preventing human illness and diseases, and obviating sources of danger to human health. Such action shall
cover the fight against the major health scourges, by promoting research into their causes, their transmission
and their prevention, as well as health information and education.
The Community shall complement the Member States' action in reducing drugs-related health damage, including
information and prevention.
Reference 21: Knowing me Knowing you: Curriculum for our future. (2002). ADHD Project funded by the
European Commission: Third report. Denmark.
7. 1. Adult ADHD and social exclusion
In all aspects this report shows a need for immediate action. Due to the way our societies are organized people
with ADHD are not able to fully obtain their human rights and they are socially excluded in several ways.
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ADHD is a handicap that is “invisible” and other people see that they do not fulfil the expectations of reflected
mature behaviour but have impairment in major life activities. They think they should be able to pull themselves
together - like they are able to themselves - so through all there is a “moral component”, i.e. “they could if they
would”.
Adults with ADHD are socially excluded at many levels. They do not have equal opportunities and access to all
services, i.e. they are underachieving at work and in education and they are unemployed. Due to low self-esteem
and different self perception they are excluding themselves and they are related to social outlaw groups. Too
many adults with ADHD are involved in crime and substance abuse.
Adults with ADHD demand
• an emphasis on ability instead of disability
• the provision of active support measures
• inclusion in mainstreaming society
• independent decision making and taking responsibility on issues which concerns them
• nothing about ADHD adults without ADHD adults
Reference 22: The public presentation of the European Citizens’ assessment report at the European
Parliament. (2006, January). Meeting of Minds: European Citizens’ Deliberation on Brain Science.
Brussels, Belgium. Retrieved March 2, 2006 from
http://www.meetingmindseurope.org/europe_default_site.aspx?SGREF=14&CREF=5440
Recommendations p. 12
• We recommend implementing a lifelong method of providing education and information so that
people are aware of diversity. Awareness should be raised amongst teachers, health care professionals
and social workers about diversity during their training so that they can raise the awareness of the
people they meet in their professional lives Public campaigns and TV programmes should be developed
to provide people with better information to prevent stigmatisation. There need to be more experts
whose fields are education and school psychology.
• People have to be able to participate in their conventional environments, where possible. When
it is not possible to integrate, we should work on acceptance. Nevertheless, we need also to recognise
and accept differences and not try to integrate at all costs.
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ANNEX III. ORGANISATIONS INVOLVED IN ADHD-EUROPE
(18 COUNTRIES/27 ORGANISATIONS)
COUNTRY ORGANISATION
Austria Verein-Adapt
Belgium centrum ZitStil
Belgium TDAH-Belgique
Belgium AD/HD Family Support Group in Brussels
Belgium English speaking adult adhd support group
Cyprus ADD-ADHD SUPPORT
Danmark ADHD-Foreningen
Finland ADHD-association
France Hypersupers
Germany BVAD
Germany BV-AH
Germany Bv AUK
Germany ADHS-Lichtblicke
Hungary Positiv
Ireland HADD
Ireland INCADD
Italy AIFA Onlus (Associazione Italiana Famiglie ADHD)
Luxemburg SCAP (Service de Consultation et d’Aide Psychomotrice)
Malta AD/HD Family Support Group
The Netherlands Balans
The Netherlands Impuls
Norway ADHD-Foreningen
Poland ADHD-association
Spain Federacion Espanola de Asociaciones de Ayuda
al Deficit de Atencion e Hiperactividad
Spain Adana
Sweden Attention Sweden
United Kingdom ADDISS