transnational meeting 1
11-12 February 2019
The meeting is chaired by Fokion Dimitriadis, vice president of EPIONI. Fokion welcomed the participants and the representatives of various stakeholders, and kicked off the meeting.
Mr Dimitriadis welcomed the Officer of the European Parliament Office in Greece and expressed his warm thanks for the hospitality at the EU Liaison Office in Greece, as well as he expressed his thanks to Mr. Chrysogelos, ex- EU member, for his intervention regarding the bestowal of the meeting room and Mrs Marietta Giannakou, former MEP, and former minister of Health. During the kick off meeting, representatives of all partners participated in. Moreover, Mr Brian Dow, from Rethink Mental Illness accepted the coordinator’s invitation and participated in the 2day meeting and welcomed the members of the partnership and wished all the best for the project’s cooperation. Also, Mrs Aikaterini Theofilopoulou, Officer at the European Parliament Office in Greece welcomed the participants and he mentioned that informal caregiving is among the EU priorities within the topic of Health for the European Parliament and the European Union and therefore this kind of projects is very important. Also, he mentioned the necessity of the participation of all people at the EU elections next May noticing that it is a really important issue for the EU and its citizens regarding their representation in the European Parliament.
Moreover, Mr. Nikos Chrysogelos, Former Member of the European Parliament gave a welcome speech and he wished much success to the Learn4Carers project exchanging good practices for informal caregivers. He referred to his social cooperative “Anemos Ananeosis” that is open to collaboration as well as to a hostel (Welcommon Hostel) which is a space in the centre of Athens that it can host events, exhibitions and other performances. It has been regarded as an innovative proposal for sustainable tourism, innovation, art, social and job integration based on the idea of “community”.
Professor of Psychiatry and former president of the World Federation for Mental Health underlined the significant contribution of caregivers but also the support carers need.
Mrs Marietta Giannakou underlined the good momentum (before the European Elections of 26 May 2019 For caregivers association to contact politicians and advocate for the support of informal caregivers.
Mr Theodore Vontetsianos expressed his wishes for a good cooperation for the project and informed the participants about the European Innovation Partnership on Active and Healthy Ageing (EIP–AHA).
The Innovative Medicines Initiative (IMI) State representative in Greece and CEO of Galenica wished much success to the Learn4Carers project
- To contact politicians to engage them for the support of caregivers before the European Elections.
Presentation of partners
After the welcome speeches, each partner presented itself for about 10 minutes. Each of the 5 partners made presentations about the work of their organisation, the state of play with respect to family carers in their respective countries and their strategy of implementation of the project. PPT slides used in four of the five presentations form part of these minutes, and are attached.
The presentations started with
Mr Liam O’Sullivan who is the Executive Director of Care Alliance Ireland. Their moto is “Guiding Support for Family Carers” Their office in Coleraine House, Coleraine Street, Dublin, Ireland. The organization is very active on Twitter: @CareAllianceIrl Mr Liam O’Sullivan made a presentation on the support of carers in Ireland.
Mr. Stecy Yghemonos presented Eurocarers and the work this umbrella organization does within the EU setting. Mrs. Claudie Kulak and Mrs. Estelle Marchand presented the “La Compagnie des Aidants” organization. Their awareness campaigns, the celebration of carers day in France and the lobbying within the EU. Mr. Spyros Zorbas shared the current and future European projects for EPIONI. EPIONI is a new organization but active in the advocacy of Greek carers. Mr. Zorbas mentioned that he contacted the Ministry of Health in order to send a formal request to the Hellenic Statistical Authority (ELSTAT) to include in the Census of 2021 the question “Are you a caregiver?” and “How many hours per month do you spend on caregiving?”. Finally Mr. Zorbas mentioned the excellent collaboration with PEPSAEE. Mr. Nikos Drosos from PEPSAEE- presented PEPSAEE profile and informed the participants that the 12.2.19 they will have the opportunity to visit their day centers in Athens. By continuing – according to the agenda- the presentations referred to the project’s overview, focus group session. Mr. Zorbas, project manager, presented the project’s overview in order to make the partners and the rest of the participants to be more familiar to the “Learn4Carers” project.
The general aim, the vision and the objectives were presented as well as the need for learning good strategies and interventions for caregivers in Europe. Reaching the end of the presentation, the presenter noticed the project’s main deliverables (Good practices guide – focus groups, dissemination activities, 2 videos from MEP, social media, leaflet, 3 newsletters) and their time-plan. After the lunch break that took place at the restaurant of the Acropolis Museum, (and a short tour of the Acropolis Museum) the partnership returned to the venue of the meeting for the rest of the presentations.
The meeting was continued with a workshop of an hour of Good Practices of Caregivers support. The meeting resumed at 3:30pm. A live skype presentation was delivered by Dr. Florian Caspari, CEO, https://toechtersoehne.com/ (Germany) in relation to his online-care courses for unpaid caregivers. A number of questions followed. A further presentation was made by Brian Dow, Deputy CEO Rethink Mental Illness https://www.rethink.org/ (UK) about his organisations work. Finally, Mrs Christina Nomikou, (Aggigma Zois, Greece) delivered a presentation about her organisations work in relation to supporting Cancer Patients. (http://agigmazois.gr/) It was agreed that Aggigma Zois will endorse the project. Mr. Stecy Yghemonos, (Eurocarers) presented briefly about New EU Strategy on carers, a blueprint for carer-friendly policy & practice” Mr. Spyros Zorbas (EPIONI) facilitated a brief discussion around the following aspects of the Learn4Carers project. Dissemination, Evaluation, Quality Manual, Risk Management, Grant Agreement, Financial Rules, Work Plan and Updated project Schedule.
Agreed Actions from meeting: All the project templates and documents presented by Spyros were approved.
(The meeting ended at approximately 6pm.
According to the project’s timetable, the partners will meet regularly via Skype. Liam asked to have the next Skype on May 2019.
12.2.19 PEPSAEE DAY CENTER – 2ND DAY
The partners were warmly welcomed to two of the PEPSAEE Day Centers in Athens. This began with a visit to the “Specialized Day Center “Social Dialogue Center”, with a focus on drama/creativity. (41, Ipirou St., Athens (Metro Station “Larissa Station”)
The partners were then introduced to a group of five family members/supporters/carers of people with mental health conditions. Partners introduced themselves and then the family members kindly shared their caregiving experienced with the group. This session was facilitated by Dr Kelly Panagiotopoulou. The facilitator and Minute Taker for the focus group was Mrs Kalliopi (Kelly) Panagiotopoulou. Members of this important Focus group included unpaid carers of people with mental health problems, members of staff from the PEPSAEE Day Centre at 8, Alkamenous St., and representatives of organisations specialising in the support of informal/unpaid carers in other countries. The latter were visiting Athens as part of an EU Commission Erasmus Project entitled Learn4Carers. The aim of the session was the exchange of ideas, information and best practices, the recording of the challenges experienced by informal carers and the creation of an action plan for the implementation of measures for the benefit of carers and the relief of their burden. The issues addressed were as follows:
- Participants reported that the day centre they and their family member use provides a wide variety of beneficial activities.Parents’ anxiety can be reduced while their children are in attendance there. The client can choose in which of the activities to participate, while remaining under psychological/psychiatric supervision. Often the client attends gladly, but if reluctant, help is offered on an individual basis to allow for gradual socialisation, allowing for positive development through participation in activities.
- A support group for parent and relatives of people with mental health disorders is held fortnightly at the PEPSAEE Day Centre, and is helpful because: there is fruitful cooperation with others facing the same difficulties, realising that they are not alone – many having struggled for years before attending – mutual support and comfort are offered when a family member is refusing to attend; ideas and experiences are exchanged, day-to-day practicalities are discussed, and parents are happy in the knowledge that their adult child will have somewhere familiar to go after their death. Outside the support group, people often face isolation and stigma due to the fear associated with mental illness.
- Referral Methods: people are referred to the PEPSAEE Day Centre from the hospital where they have been an in-patient. This could be improved if there was an assessment team for each new referral including a psychiatrist, a psychologist, a social worker, a mental health nurse, and a parent or guardian, who would, in conjunction with the patient, propose the therapeutic plan, which would be modified from time to time according to progress.
- The need for support for carers.
- Organisations which would help the patient to remain at home, or with the issue of socialization, or assist in finding employment, according to needs.
- Campaigns to raise public awareness, to reduce stigma, to eliminate institutionalization, and to support the families who nowadays provide the most care.
- Mental illness is a social problem, not solely a family problem. Society needs to be involved so as to lighten the burden for families.
- Financial support for carers. There is a need for a carers’ register, using specified criteria.
- We need to approach charitable organisations, and/or individuals involved in charity works to maximise support for families, just as happens in other cases, eg. cancer sufferers.
- We need to approach famous people (eg. artists, writers, athletes, politicians etc.) facing mental health problems either themselves, or in a family member and persuade them to speak openly in public about the difficulties they face, to help reduce stigma.
- Both medical staff and politicians need to be made aware of the value of Day Centres.
- A group composed of psychiatrists, patients and carers speaking with one voice can help to persuade politicians of the need for long-term planning of funding – at least a ten year programme – for mental health services, as mental disorders are known to be increasing in frequency to a greater extent than physical illnesses.
- While mental and physical health are equally important, there is a funding gap, in favour of physical health care.
- There is a large number of carers (about ¼ of the population across Europe). A database of carers would be a big help, as many people do not think of themselves as carers. The media could help with this
- 60% of carers are working, and they could exchange ideas, experiences, solutions they have found, and other information through access to an appropriate electronic platform.
- Mobile information unit: a social worker based in a mobile unit could visit hospitals to provide information for carers.
- Access to information during hospitalization. Both for patients and for carers to become aware of services available.
- A joint approach to the legal framework and to funding plans. The European Commission in collaboration with National Governments, being aware of the voting power of carers, could campaign to address the carers’ agony about “what happens when I am gone?” This needs to be a group effort, requiring constant awareness, whilst realizing that nothing is obvious to the uninformed.
- Demands must be: simple, practical/achievable, measurable.
- It is time to accent the role of carers. Carers rarely talk about themselves and their role, they are a neglected group of our fellow citizens.
- People living with mental health conditions and their carers have the same desire as everybody else: family, friends, to understand their condition, financial security, to live as near a normal life as their condition allows, with hopes and dreams for their future.
Next Project Meeting Session:
Mr. Liam O’Sullivan from Care Alliance Ireland delivered a presentation on his ideas and plans for the second transnational Meeting in Dublin (16-17.09.2019). A discussion followed –specifically in relation to whether or not the focus for the meeting should remain on the area of mental health caregivers – or would it be better for it to be broader in nature Agreed: Partners to consider the focus Group for the Dublin meeting
Networking Lunch with users, carers and professionals. Further discussions took place in relation to the project outputs – including the guide, google forms, leaflet and questionnaire.