Board meeting of the Nordic aphasia association (NAR)

Date: Thursday, October 6 2022 at 09:00 – 12:00
Location: Sigtúni 42, 105 Reykjavík

Participants: Linda Bergfledt and Berit Ahlberg from Afasiforbundet i Sverige (Sweden); Bernt Olaf Örsnes from Afasiforbundet i Norge (Norway); Krista Hoffström and Marika Railila from Hjärnforbundet i Finland (Finland) and Baldur Kristjánsson and Þórunn Hanna Halldórsdóttir from Heilaheill (Iceland). Sunneva Davidsen, Heilafelagid (Faroe Islands) and Marianne Brodin, Afasiforbundet i Norge (Norway), announced the cancellations.

Moderator: Þórunn Hanna Halldórsdóttir

Secretary: Baldur Kristjánsson.

  1. Meeting set and agenda presented for approval – The chairman called for comments on the agenda, which had been posted online, and the agenda of the meeting. None of these occurred. The agenda is attached to these minutes.
  2. Short presentation from member associations – Representatives of member countries explained themselves and the main projects of their associations.
    1. There was some harmony in the challenges between countries, e.g. difficulties in recruiting members, which affects budgets for the associations and recruitment in group work. For some, staffing has been reduced due to reduced budgets. There is some concern that financial responsibility for health and rehabilitation is being transferred from local authorities to the state, and it is unclear what effect this will have on the situation of people with aphasia. Many local sub-associations maintain group work, but some struggle to reach new participants, especially young people. Various innovations have been tested to enhance the work, e.g. recruiting young people with aphasia into the clubs, choir work and bowling. The participants in the associations are getting older as there is little renewal. Access to speech therapy for people with aphasia is often limited, and the associations try their best to draw the government’s attention to this. Here only the big ones are highlighted, but the websites of the companies are referred to. Much was said about the work of the associations, various types of technology, the reasons why younger people do not join the associations, cooperation with public universities, and more. The associations agreed that services for people with aphasia are still too haphazard in such a way that there is no one who has an overview or the role to inform about everything that is available and/or the person is entitled to.
    2. Bernt Olav informed about the changes underway at Afasiforbundet i Norge. The association will be closed down in its current form, but the activities will be merged with a larger patient organization called LHL. This will have an impact on NAR as it needs to be investigated if LHL can and wants to be a member of NAR. LHL has been positive for such participation but has not given a definite answer as it has been uncertain how extensive NAR’s activities will be. The merger took place in September, but this must be made clear at the next NAR general meeting, as the NAR laws must be changed in parallel with the fact that Afasiforbundet i Norge will not exist in the year 2023. In light of this, the representatives of Norway have refused to take over the reins of NAR from Iceland, as planned. Other participants of the meeting reiterate the importance that representatives of people with aphasia in Norway remain part of NAR.
  3. Discussion on larger projects by NAR – NAR has sometimes applied for funding for larger projects, e.g. publishing brochures, short videos or other things to raise awareness of the situation of people with aphasia.
    1. Doubts were expressed as to whether NAR can handle such larger joint projects as it is today. The member associations agreed that NAR should primarily be a platform for exchanging experience and knowledge accumulated in each country. There would be an opportunity to raise issues that are important to people with aphasia, e.g. to increase public and government awareness of the status of this group, the need for more speech therapy and the need for increased access to information and opportunities for participation in society for people with Aphasia. The group’s experience showed the importance of on-site meetings for this purpose, remote meetings have not have been as useful, except for shorter meetings to discuss certain well-defined issues. The number of meetings has already been reduced from two a year to one, so the importance of keeping them was reiterated. It is important to keep the discussion going and strengthen the connections between the member associations. Already, that relationship has contributed to the fact that the associations have translated brochures and other material from each other. This good cooperation thus contributes to further development within each association. That is especially true for the smaller associations, such as Iceland and Faroe Islands.
  4. Other matters
    1. Annual fee NAR – Iceland has issued a call for payment of the annual fee for 2021 and 2022. It is assumed that the annual fee for 2022 will be the same as for 2021, although there is no approval to that effect in the minutes of the last general meeting. The annual fee is now 200 Euros per association, except 100 euros for Heilafelagid. It was suggested that the annual fee for the year 2023 be 100 euros per member company. This was to be discussed further at the general meeting later in the day.
    2. Nordic Aphasia Day, 10 October – It was asked how the member associations planned to draw attention to Aphasia Day on 10.10. 2022. The following points were made:
      1. Radio shows
      2. Visits and presentations on aphasia to the public in hospitals and/or in commercial premises
  • Promotions in newspapers, press releases or articles
  1. Grants to affiliates across the country, e.g. for speakers or other celebrations
  2. Promotions on social media, e.g. Twitter and Facebook.

It was then pointed out that in Sweden a theme for 10.10 is chosen for each year. This happens December the previous year. This year’s theme was “Increasing access to speech therapy in the local environment.” The idea was floated that NAR selects these themes at its general meeting. No position was taken on this matter, it was suggested that this be examined more closely at the next meeting.

  1. It was stated by Marika and Krista from Finland that this was Marika’s last meeting and that she is now stepping down as a representative of Hjärnforbundet i Finland. It is be difficult to find people within the association who could/wanted to be a representative for NAR. One of the reasons is that there are not many who speak Swedish or another Nordic language. Another is if Hjärnforbundet sees its benefit in further participation. The participants of the meeting reiterated the importance of Hjärnforbundet continuing in NAR and that we could possibly use English in meetings rather than Scandinavian languages. However, it needs to be investigated if the Nordic Welfare Council makes any requirement that the language of meetings be Scandinavian. Þórunn Hanna will send a mail and inquire about this. The participants of the meeting agreed that NAR meetings are important for the associations and that it is important to preserve this Nordic collaboration and the connections between the associations.
Meeting adjourned at 12:00

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