Youth Mental Health in the Community: the role of patient s organisations
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1 Youth Mental Health in the Community: the role of patient s organisations Venice, 18 th December 2014 Pedro Montellano President of GAMIAN-Europe
2 GAMIAN-Europe Global Alliance Mental Illness Advocacy 59 mem bers in 28 coun tries Networks 2
3 GAMIAN Europe A patient-driven pan-european organisation, which represents the interests of persons affected by mental illness and provides: Advocacy Information and education Fighting stigma, discrimination and exclusion Patients rights Cooperation, partnerships and capacity building Promoting self help and community care Surveys and Research projects 3
4 Advocacy 1. Act as the voice for patients both at EU and national level, and demonstrate that this voice is useful as well as indispensable 2. Ensure that patients are at the centre of all aspects of healthcare provision 3. Work to improve the availability, accessibility, and quality of treatment for all mental health problems
5 MEP s s Interest Group at EP At least three times a year GAMIAN-Europe organises meetings at the EP with Members of the European Parliament. The meetings started on 28 th April 2010: 26 th October Health inequalities and mental health 9 th February Mental health in Europe2020 Mental health in the Active and Healthy Ageing Innovation Partnership (AHAIP) 3 rd May Stigma and Depression 22 nd September Mental Health and the Brain 24 th January Depression 24 th April Mental health for Children and Adolescents (ADHD)
6 Information and education 1. Provide reliable and quality information on mental health problems to patients and general public 2. Improving the training, education and understanding of mental illness for patients, carers, health professionals
7 Information resources information and support to member organisations by means of educational seminars and conventions newsletter, handbooks on specific mental illnesses, website and Facebook page.
8 Stigma and discrimination 1. Increase awareness, knowledge and understanding of mental health problems 2. Help reduce stigma, prejudice, and ignorance in relation to mental health problems and fight discrimination 3. Patient s rights - Focus on the development and enforcement of rights for persons affected by mental health problems, e.g. access to appropriate treatment
9 Partnerships and cooperation with other stakeholders with a view to: supporting the development of mental health policies which take account of the views of patients acknowledgement of role of patient organisations as partners in decision-making and facilitators in the sharing of best international practice securing the best possible treatment for patients with a mental illness and at the earliest possible opportunity
10 Partnership/Cooperation (examples) Involvement of GAMIAN-Europe: WHO-Europe (Mental Health Action Plan) Joint Action on Mental Health and Well Being EC Group Mental Health Experts EUFAMI European Brain Council (EBC) Expert Platform focus on Depression European Patients Forum (EPF) EPPOSI European Medicines Agency (EMA) EPA, ECNP, UEMS others 10
11 Best practice award for members Shares experience and examples of good practice to strengthen the role and voice of patient organisations and effective input in EU and national policy development. Facilitates an open and inclusive pan-european dialogue among patient organisations and other interested bodies to exchange information and ideas. Greek association KINAPSI was the first winner of the GAMIAN-Europe award to member organisation
12 PERSONALITY AWARD Dr. Lawrence Gonzi, Prime Minister of Malta (2005) Mr John Bowis, Member of the European Parliament (2006) Professor Norman Sartorius, Professor of Psychiatry (2007) Mr Kjell Magne Bondevik, Noregian Prime Minister (2008) Mr. Stephen John Fry, Actor, Writer, Director (2009) Mr. Jürgen Scheftlein, Policy Officer DG Sanco (2010) Mrs & Mr Vappu and Illka Taipale, Finland (2011) Dr. Barbara Lopes Cardozo (2012) Dr. Matt Muijen WHO Europe (2013)
13 Research Projects (FP7) MOODFOOD Impact of food and nutritional behaviour, lifestyle and the socio-economic environment on depression. Dissemination MASTERMIND Management of mental health Board disorders through Newsletter advanced technology and services telehealth for the MIND: Website depression. Facebook Events Patient Advisory E-COMPARED will conduct comparative effectiveness research in routine specialized mental care settings on the (cost-) effectiveness of internet-based treatment for depression in comparison with standard care.
14 Surveys Stigma 2006, 2010 Physical and Mental health, 2011 Adherence to treatment, 2012 Mental health and Workplace, 2013
15 Patients organisations What can they do on behalf of mental health in youth? 15
16 Advocacy/Policy Awareness campaigns highlighting the importance of mental health in youth: extensive use of the media (but with criteria). Patient led campaigns are more effective 16
17 Advocacy/Policy Raise awareness on politicians at European and National level to the benefits of addressing mental health in youth: burden + costs of not treatment (not reaching full potential). 17
18 Advocacy/Policy Cooperation with other Isolated cogwheels stakeholders involved, to increase the discussion on mental health in articulation youth, in order to establish an articulation that allows concrete outcomes in the solving of specific Articulated and functional outcome problems associated to these ages. 18
19 In the fight against mental disorders Clinicians and Patients are not in opposite sides But They surely are in different positions within the same side 19
20 Care/Treatment Different perspectives Different results Different approaches Different Methodologies 20
21 Those differences are a tremendous opportunity!!! 21
22 Care/Treatment Patients organisations are a necessary complement to professional services; have a very different environment. They are Afective Shelters. have a very diferent approach towards the illness (holistic). To combat physical/neurological/biological symptoms is very important but Psychotherapy/psycho-education/self-help groups are complementary, and very important too. have a focus on recovery. 22
23 Care/Treatment can represent an alternative view on mental illness, based on members personal experience. highlight that the daily life experience of patients is diverse. demonstrate that dialogue between peers can be very helpful; 23
24 Care/Treatment Different strategies to improve resilience and cope with the social impacts of having a mental illness STIGMA Psycoeducation (patients/families) Peer support (experts by experience, legitimacy. e.g. self stigma) Self help Recovery help young people at risk of developing mental health problems, namely on tackling the that often prevents young people seeking help. 24
25 Care/Treatment can assist young people on how to best access and use the Mental health services from the patients perspective. This is important because the difficulties in transitions between child and adult services, due to the poor coordination and the lack of age appropriate mental health services/doctors to support this particular group. early intervention in community settings 25
26 Care/Treatment can educate their members in self management of their disorder can inform/educate their members in risk assessment and decision making. provide access to reliable information. Information is not knowledge. 26
27 Care/Treatment Promotion of healthy lifestyles and preventing other health and social concerns for young people related to a poor mental health: educational achievements relationships substance use employment Good practices 27
28 Care/Treatment Access to research results and new developed treatment (geographically, financially, etc ); Participation in research projects 28
29 Members of patient associations tend to have more positive attitudes towards treatment Gauci et al. Poster presented at ECNP, October 2012, Vienna, Austria
30 Volunteer Work Should be coordinated by professionals Empowering for the volunteers, patients or not. Increase awareness on mental health issues as well as literacy Very efficient in terms of cost Can contribute to get additional funding in the community Can bring new perspectives to the organization Increase the capacity of the organisation 30
31 THANK YOU 31
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