25 June 2013
ESCIF would like to their Swiss hosts for an extremely interesting programme, a beautiful venue and highly enjoyable social events. As an extra bonus – the weather in Nottwil was warm and sunny, in stark contrast to the heavy rain and flooding experienced in other parts of Europe.
The theme of the Congress this year was Living with SCI: communication, information and learning and the programme included presentations and workshop discussions on a range of research projects and online resources focussing on SCI.
The first session of the Congress was led by Professor Fin Biering-Sørensen from Denmark who introduced the web-based learning resource developed by the International Spinal Cord Society (ISCoS). ESCIF’s President, Jane Horsewell, considered the relevance of elearnsci.org for SCI consumers and the possibilities to develop the resource further – specifically, with consumers in mind.
The next sessions were devoted to projects from Swiss Paraplegic Research: the development of an interactive website for people living with spinal cord injury Paraforum, which was followed by a workshop to discuss the ideas behind the development of the site; then the first results of the Swiss cohort study SwiSCI. ESCIF would like to thank Sara Rubinelli and Mirjam Brach (and colleagues) for their interesting contributions on Paraforum – we look forward to seeing and using the resource in future! Thanks too to Martin Brinkhof for giving insights into the ambitious SwiSCI project.
Two of ESCIF’s regular sponsors had been invited to make the next presentations.
Kevin Schultes, a member of the Board of Trustees of the Manfred Sauer Foundation, introduced an online information service derQuerschnitt.de that had been launched by the Foundation earlier that week. Søren Bremer, from the Global Marketing department of Coloplast, presented two initiatives from the company; Innovationbyyou.com – a website where consumers can ask questions about and contribute ideas to the development of medical devices, including those for bladder and bowel management – and the app Wheelmate which directs the user to the nearest disabled parking spaces and accessible toilets.
The final session of the day was a fascinating and optimistic presentation by Professor Dr Martin Schwab from Zürich on nerve fibre growth and regeneration in the injured spinal cord.
Assembly of Delegates
In addition to the “formalities” of approving last year’s report and accounts, the Assembly included the approval and acceptance of three new members.
From Denmark, Niels Balle introduced the organisation PTU (an organisation primarily for polio and traffic accident survivors) in his role as chairman of the SCI committee. He underlined the close collaboration between his organisation and the existing ESCIF member from Denmark RYK. From the Czech Republic, David Ruzicka, told the Assembly about the activities of Czepa – an organisation for people living with spinal cord injuries based in the country’s capital Prague. Finally, from Spain, Esther Peris (who has previously represented the Spanish member organisation ASPAYM) and Natacha Leon provided an interesting insight into the activities of Fundación Lesionado Medular.
Needless to say, these three new and active members were warmly welcomed by the delegates.
Finally, the Assembly turned its attention to the issue of “future activities”. It was decided to move ahead with the projects outlined by the Executive in the document that was sent out prior to the meeting. Jane Horsewell assured the members that the Executive would draw up a more detailed proposal of the two projects after the summer and that these would be sent to all member organisations.
The Executive would like to thank Daniel Joggi from the Swiss Paraplegic Foundation for acting as chairman throughout the Assembly.
After lunch, on a hot Friday afternoon, ESCIF’s Vice President, Winnifred de Moes, was the session chairman for the final part of the meeting. Fortunately, the presentations were so interesting that no-one in the audience fell asleep!
Mirjam Kanelec from the Slovenian organisation presented the results of a study into what it is like to live with a spinal cord injury in Slovenia. Perhaps the most surprising aspects of this study were, first, that they managed to reach 98% of the SCI population in their country and, second, that the questionnaire was not anonymous! This means that the organisation now has very specific, personal information and, thus, the possibility to assist individual members with the problems they confront in their everyday lives.
Lia Vasickova from ParaCENTRUM Fenix in the Czech Republic described an information project that the organisation began last year. As road traffic accidents constitute the major cause of traumatic SCI in the country, the project is designed to inform and warn older school pupils of the potential dangers of venturing forth in today’s busy streets.
Frans Penninx told the audience about a recently-completed project in the Netherlands that was aimed at describing the optimal care pathways for people with SCI from the accident/onset, through treatment and rehabilitation, to lifelong care and follow up. As a member of the ESCIF working group on lifelong care, Frans pointed out that the final issue is awaiting further elaboration in the group’s report that will be released this autumn!
Finally, Annuka Koskela and Anni Täckman from Finland showed us a magazine produced by Akson ry. Dealing with a multitude of different issues concerning fertility, pregnancy, and parenting with SCI, the organisation decided, after a very positive response in Finland, to translate the magazine into English for the benefit of other SCI colleagues in Scandinavia and Europe. It’s a beautifully produced publication that should be brought to the attention of our members.