EBC MEMBER ACTIVITIES

The membership of the EBC consists of patient groups, scientific and professional organisations as well as industrial partners. As per its statutes, the EBC accepts as Full Members pan-European umbrella organisations with an interest in the brain. Any organisation that supports the aims of the EBC can apply to become an observer in order to contribute in an advisory capacity. Organisations or individuals that have contributed in an outstanding fashion to the aims of the EBC can also become honorary members.

MEMBER ORGANISATION

GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe)
Website

Nigel Olisa, Executive Director
executive.director@gamian.eu

CONTACT

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NEWS & ACTIVITIES

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NEWS, ACTIVITIES & ACHIEVEMENTS

2020-2021 ONGOING ACTVITIES

1. Quality of life project
For people diagnosed with a mental health condition, quality of life is key to leading a fulfilling life. Quality of life is a personal and subjective experience, and factors that can influence a person’s quality of life include a wide range of areas. Quality of life for people with mental health conditions has been the subject of research for some time. Much of this has looked at what quality of life means and how it can be improved. Yet, information on quality of life isn’t always made easily accessible to patients. Following the successful release of our video on quality of life, we’d like to create a guide on how to manage quality of life with a mental health condition. The aim of the guide will be to raise awareness of the fact that mental health patients can enjoy good quality of life and provide patient- informed tips on the matter. A large social media campaign, including infographics, will also be conducted as part of this project.

2. Schizophrenia Companion Guide II “Continuity of care”
We are in the process of compiling a second guide for our Schizophrenia companion series, in collaboration with EUFAMI. The guide provides evidence-based information to patients and families regarding schizophrenia and the promotion of healthy lifestyles that can reduce risk of poor physical health. The contents of the guide were informed by discussions between patients
and other relevant stakeholders held as part of two editorial board meetings.

3. COVID-19 Survey for Patients
We have conducted a survey on the specific challenges faced by mental health patients during the COVID-19 crisis. We aim to bring a unique perspective, focusing specifically on the patient’s needs, both on the short and longterm. The survey responses will then be used to develop a report highlighting the priorities identified by patients. We will also produce an infographic presenting policy recommendations.

4. Breaking Depression Project
The Breaking Depression project is a pan-European health awareness campaign aiming to raise awareness of the challenges of living with depression. As part of this initiative, webinars are organized in which patients and carers are invited to share their experiences.

5. MEP Alliance Meetings
We have successfully held three MEP Alliance Meetings this year, in which GAMIAN-Europe outlined the need for EU- level mental health activities and discussed the planning of advocacy initiatives. Our next meeting will serve to discuss the next steps for campaigning for a dedicated European Year for Mental Health.

6. EU Research Projects
We are currently participating in patient engagement and dissemination activities for a number of EU Research Projects, including the ImpleMentAll, EBRA, CAPICE, SYNCHROS, InALMH and IT4Anxiety projects.

7. Slack Platform for Members
We have created a Slack Platform that will soon be shared with GAMAN-Europe members. This platform will serve as a way to engage directly with our members and gather their input on ongoing and future projects. The platform will also be used to share country best practices and provide community support to our members.

2021 FUTURE ACTIVITIES

1. European Year for Mental Health
GAMIAN-Europe, in cooperation with the MEP Alliance for Mental Health, is launching a campaign to ensure that one of the future European Years will be dedicated to Mental Health. European Years are EU-wide awareness campaigns to inform and educate European citizens and attract the attention of national governments of Member States to a particular issue, in order to change attitudes and behaviours at both the national and European level. Since 1983, there have been such European Years, each with a difference theme, e.g. Citizens, People with Disabilities, Active Ageing and many more. It is increasingly recognised that there is an urgent need for better and wider understanding of mental health and for effective action. The COVID-19 pandemic has highlighted this crucial need. A dedicated European Year of Mental Health could be a tangible and coordinated initiative to raise awareness, provide a platform for exchanges and sharing, promote and facilitate discussion and contribute towards improving mental health across the board. While the EU level’s limited remit in the field of mental health has to be recognised, it should make use of the tools that it does have at its disposal; designating a European Year is one of those tools.

2. Patient-clinician experience in schizophrenia
To date, the experience of the patient-clinician relationship based on personal narratives has not been widely explored. When available, such feedback tends to be more anecdotal. Although such patient narratives are emotionally authentic and describe deeply personal experiences, there is a question whether such experiences as described by ‘mental health service survivors’ are representative. Mental health care would benefit from a better understanding of successes and frustrations from both the patient and the mental health worker’s perspective regarding the care process, and actions that could prevent or reverse such negative experiences. Given the success of our Patient-Clinician Experience in Depression project, a similar project will be conducted on the patient-psychiatrist interactions in Schizophrenia, in partnership with the European Psychiatric Association.

3. Suicide prevention in youth
Currently, the second leading cause of death amongst young people is suicide. The COVID-19 pandemic has led to a higher number of young people facing uncertainty with regard to issues such as education and employment. A number of surveys have reported higher levels of worry and depressive symptoms among young people, with those with pre-existing mental health conditions being disproportionately affected. Another concern is the current lack of youth representation at the European level when it comes to mental health. For all the above reasons, GAMIAN-Europe has identified suicide prevention in youth, with a specific focus on depression, as one of its top priorities.

4. Peer support project (3 year programme)
Peer support for people with mental health conditions has been shown to lead to a range of positive benefits including greater empowerment, hope, quality of life, self-esteem, social inclusion and better engagement with services. For people who become peer support workers the added benefits include increased social skills and employment opportunities and improved social networks.

Patient networks within GAMIAN-Europe have been carrying out peer support training activities across Europe for decades. Hungary, the Netherlands, Belgium, Finland and the UK, for example have both formal and informal training programmes, some of which are accredited. Many peer support activities have their own materials and resources to deliver peer support programmes. However, these networks are national, with little connection across borders. In light of these issues, GAMIAN-Europe will aim to enhance connection between peer support groups, at a European level to facilitate the sharing of best practice, knowledge and methods for delivering peer support activities.

5. Hearing loss and mental health
Evidence demonstrates that there is a strong association between hearing difficulties and mental health conditions. Hearing loss is the chronic health condition that is the most often associated with depression in older adults. Hearing difficulties could increase symptoms of anxiety and depression by 4 times. Current evidence shows that interventions targeting hearing loss may be helpful for reducing symptoms of psychiatric disorders.

Unfortunately, information regarding the link between hearing loss and mental health is currently lacking. It is of utmost importance for patients and practitioners to have the proper attitudes and knowledge to identify hearing loss in patients with mental health conditions. National health services need to adapt to the fact that hearing loss and depression do not exist in isolation but are interrelated. Awareness needs to be raised about the specific symptoms of hearing loss to help patients recognise early signs. This project will aim to address these issues.

6. Cancer and depression project
Today, only around 20 to 30% of cancer patients with psychiatric disturbances are recognised as having such conditions and receive adequate treatment. Depression has been found to be one of the most difficult psychiatric problems to diagnose in cancer patients. Indeed, many symptoms of cancer and side effects of treatment may be confused with the symptoms of depression, such as weight loss, sleep problems, fatigue/anergia, and difficulty concentrating. Depressive symptoms may also be difficult to distinguish from other difficulties associated with cancer such as pain, or adjustment to the cancer diagnosis. This project will aim to raise awareness of the link between mental health and cancer and educate relevant stakeholders about the specificity of symptom display in cancer patients.

6. Major Depression Disorder and Healthy Eating
There is a clear link between healthy eating and mental health. This project will seek to raise awareness of this link and learn from patient experiences about how food has helped their mental health. Guidelines and advice will be developed through in-depth discussions with experts-by-experience.

7. Mental Health and Art competition
GAMIAN-Europe will be organising an art competition in which members will be invited to showcase an art piece. The piece will aim to represent experiences they’ve had relating to their mental health condition.

8. Brain Awareness Week
GAMIAN-Europe will use the opportunity of Brain Awareness Week to raise awareness of the existing link between brain health and mental health, with a focus on the impact of neurological conditions on people’s risk of developing a mental health condition.

8. World Mental Health Day (WHMD)
GAMIAN-Europe will launch a series of awareness-raising initiatives, drawing links with ongoing projects.

Upcoming Workshops

1.The state of Mental Health services post-COVID-19
We will be holding a workshop aimed at exploring the following question: ‘What is the state of mental health service in a post-COVID-19 era? ‘Relevant stakeholders including patients, policymakers and clinicians will be invited to the event and a follow-up report will be produced.

2.Managing Depression and Anxiety
We will organise a series of workshops with Experts-by-Experience exploring treatment and recovery stories with regards to depression and anxiety.