In the name of patients’ interest
Interview with Hilkka Kärkkäinen, president of GAMIAN (Global Alliance of Mental Illness Advocacy Networks) Europe
«A mental health patients’ organisation is essential to helping policy-makers, health professionals and other relevant stakeholders, understand the experience of living with a mental health condition», says Hilkka Kärkkäinen, president of the Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN-Europe).
How did your association begin?
«In 1997, 12 advocacy groups or associations whose activity was dedicated to helpinge and sustaining those affected by mental ill-health founded GAMIAN inc. On January 1998, the organisation was registered in the State of New-York, USA. On May 1998, the delegates of 5 European advocacy associations, Charter Members of GAMIAN-Europe, who did not share the approach, the philosophy, the programs or the management of GAMIAN Inc., withdrew from GAMIAN-Inc. and met in Paris where they founded GAMIAN-Europe. In July 1998, GAMIAN-Europe was registered in Zug, Switzerland. In October 1998 a first meeting of GAMIAN-Europe members took place in Paris, on the occasion of an ECNP meeting, where GAMIAN-Europe organised a Symposium entitled “What the patients think”. During this mini-convention other organisations joined GAMIAN-Europe. In 2000, a process of registration was initiated in Belgium. Today, we are a network of close to 60 member-organisations from 27 European countries».
Why is a mental health patients’ association necessary?
«A mental health patients’ organisation is essential to helping policy-makers, health professionals and other relevant stakeholders understand the experience of living with a mental health condition. Using such “patient end-user” perspective is necessary to making sure that the interests of those with mental health conditions are correctly represented in areas such as advocacy, policy development, information and research».
From a European point of view, what are the main issues related to mental health diseases?
«Mental health disorders are highly prevalent and increasing in the EU: 50 million citizens – about 11% of the population – are estimated to experience mental health disorders. Depression is the most prevalent health problem in many EU-Member States, with suicide remaining a major cause of death: in the EU, there are about 58,000 suicides per year (75% are committed by men). Nine of the ten countries with the highest rates of suicide in the world are in the European Region.
Only 50% of those affected by depression receive treatment. In European countries, at least 30% of people with severe mental disorders do not have access to mental health care, and the majority do not benefit from the interventions that have proved to be effective. There is need for increased funding for mental health services in all European countries, particularly focusing on prevention and the implementation effective and sustainable models of care.
Currently, health and mental health are national-level competencies - they do not fall into the realm of EU-level competencies, so the EU cannot adopt directives or regulations that tackle mental ill-health. Yet, the EU is still able to produce guidelines to encourage national governments to implement health certain policies or programmes, as it has done in areas such as cancer and rare diseases».
Are there any specificities within each European country? You can mention the more relevant?
«Although stigma is prevalent throughout Europe, Central and Eastern European countries tend to face much higher levels of mental health stigma, especially with respect to severe mental health conditions, such as bipolar disorder and schizophrenia.
Central and Eastern European countries also face higher rates of institutionalisation of mental health care – as opposed to Western countries which have a higher fraction of their mental health care delivered at community-level.
European countries also show some differences with respect to mental health resources. For example, countries such as Turkey, Montenegro, Serbia, North Macedonia have a relatively small number of psychiatrists (around 9 per 100 000 inhabitants), whilst countries such as Switzerland, Norway and Iceland have much higher numbers, with around 20 psychiatrists per 100 000 inhabitants».
What are the goals of GAMIAN-Europe and how have they changed over the years?
«The main goals of GAMIAN-Europe are to improve the provision, reliability and quality of information regarding mental ill-health for patients, relatives and carers, as well as reduce stigma surrounding mental ill health. It also aims to educate about and raise awareness of the challenges of living with a mental health conditions to the public, media and policymakers, and promote a positive message that mental ill health can be treated effectively (by a variety of means). The objectives also include assisting in improving the training and education of health professionals and other personnel responsible for the delivery of mental health services in Europe.
And lastly, GAMIAN-European seeks to assist in the creation and development, where appropriate, of representative patient organisations throughout Europe.
GAMIAN-Europe’s initial aim was to focus on mood disorders; this was then extended to all types of mental health conditions as the organisation grew in importance.
Since 2014, GAMIAN-Europe is also actively involved in EU-funded research projects, with the aim of ensuring relevance of European-level research for those affected by mental ill-health by including the patient perspective into research objectives.
The organisation also seeks to effectively disseminate research findings to all patients across Europe».
What kind of activities have you planned for the European year for mental health?
«The European Year for a Mental Health is a suggestion that GAMIAN-Europe has put forward together with the MEP Alliance for Mental Health (an EU-level interest group for mental health). European Years are EU-wide awareness campaigns used to change attitudes and behaviours at both the national and European level. It is increasingly recognised that there is an urgent need for better and wider understanding of mental health and for effective action. A European Year could be a helpful tool in creating and supporting this understanding.
Potential activities of a European Year for Mental Health could include organising conferences and events to promote debate and raise awareness of the importance of mental health. It could also feature promotional and educational campaign as well as the exchange of information, experience and good practices. These activities will be done in collaboration with other European-level stakeholders in the field».
Why did you decide to organise a Covid-19 platform and how does it work?
«Current evidence points to the fact that the COVID-19 pandemic is disproportionately affecting individuals with mental health disorders. In light of a looming mental health crisis, GAMIAN- Europe wants to provide as much support as it can to its patient community.
Many organisations and media outlets are disseminating information on tips and strategies to deal with the pandemic’s mental health consequences. Yet, the abundance of information can make it difficult for patients to navigate such resources.
Our COVID-19 platform aims to bring all of this information in a single place. We also make sure to select information that is of the highest quality and the most relevance with respect to the needs of patients».
Hilkka Kärkkäinen, president, GAMIAN-Europe, confirmed her participation as a speaker at POLITICO Europe's event “Making Mental Health Matter”. The event is taking place on December 3rd, 2020 and it is convening policymakers, patients and medical professionals to reflect on what needs to be done to ensure that mental health care will be receiving the same priority as physical health treatment. Click here to confirm your participation.