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Consumer workshop a huge success
6 January 2011
At the International Spinal Cord Society’s annual scientific meeting in New Delhi, Coloplast sponsored a workshop for SCI consumers. Surprisingly, not a single Coloplast product was mentioned!
 
ESCIF’s President, Jane Horsewell, recounts:
 
“Shortly after the ISCoS 2010 meeting in Florence, I wrote to Coloplast and suggested that the company should “think outside the box” for the next conference. Coloplast prides itself on its close contact to the company’s consumers and end-users – but at international meetings its focus has always been product-based ... just like its competitors.
Diana Rostrup-Nielsen, a Senior Project Manager in the Medical Marketing section of Coloplast’s Global Marketing Department, understood immediately. We worked together to transform a simple idea to a format that could be accepted by ISCoS, and Diana worked hard to persuade Coloplast that this rather non-traditional idea was a project worth sponsoring”.
 
The idea in question was a workshop aimed at discussing the benefits of a global SCI consumer network or organisation. ESCIF is, in fact, the first SCI consumer umbrella organisation to cover such a large geographical area. The benefits that we have already reaped from our collaboration could, without doubt, be extended to other parts of the globe.
 
Jane continues:
“The “consumer workshop” was allocated a time slot of 1½ hours. We decided to run it as a panel debate – kicking off with short presentations from the members of the panel and then opening for questions and comments from the audience”.
 
Apart from Jane, who acted as both workshop chairman and representative from ESCIF, the panel members were Prof. Ketna Mehta, founder of the Nina Foundation in Mumbai; Prof. Dajue Wang speaking on behalf of the SCI activist from China, Jun Wen; Associate Professor Apichana Kovindha from Thailand and the Asian Spinal Cord Network (ASCoN) representative, and Prof. Fin Biering-Sørensen who represented Denmark, Scandinavia, Europe and ISCoS. A diverse, but very distinguished group, who addressed the question of the benefits of an active and vocal global SCI consumer organisation – from the point of view of the consumer and from that of the SCI professional – with enormous enthusiasm.
 
“As did the audience! It was fantastic that the workshop attracted so many participants (approx. 90) – considering the fierce competition from the parallel sessions. We encouraged questions and comments from the audience and we were really pleased that people responded to this. We received interesting and useful input from consumers and SCI professionals alike – I really felt that the concept of a collaboration of equal partners, each with their own expertise, came together in Delhi.”
 
The workshop raised the idea of creating a global consumer network – and, inevitably, one speaker asked “Why not here, in Delhi?”
 
Picture caption: Panel members from left to right: Assoc. Professor Apichana Kovindha, Prof. Dajue Wang, Jun Wen, Prof. Ketna Mehta, Prof. Fin Biering-Sørensen, Jane Horsewell
 
Jane remembers:
“I knew that the question would come – but I was lost for words anyway! The idea is huge – and enormously exciting. So, I agreed to arrange a meeting the following day for anyone who was interested in the idea.”
 
The meeting was a great success. ASCoN had already decided at an earlier board meeting to encourage consumer participation in future ASCoN meetings and conferences. We then decided, as a first step, that ASCoN members and consumer groups in Asia should exchange ideas with ESCIF – and vice-versa. Since the meeting in New Delhi there has already been a lively email debate on the organisation of SCI treatment, rehabilitation and care in developing countries.
 
Jane concludes:
“Meeting with other consumers in at the ISCoS in New Delhi and listening to their challenges, problems and ideas was a fantastic learning experience for me. I don’t use the word lightly but I met several truly “inspirational” people – people that I feel that we, in ESCIF, can learn from. Similarly, I believe that they can learn something from our experience in Europe.”
 
So – what are the next steps?
“Professor Fin Biering-Sørensen (President of ISCoS) and I are meeting to discuss how ISCoS and ESCIF can work together to encourage further collaboration between SCI consumers and professionals – globally. The ESCIF Executive supports the idea and Frans Penninx from the Dutch organisation has volunteered to assist with the project. The main problem is to create opportunities for the representatives of the various organisations to meet and discuss. It isn’t easy to find funding today – and for organisations from developing countries this may be an insurmountable problem. So we need to devise some easy and efficient communication channels.”
 
You can also see a report on the Coloplast homepage: http://www.coloplast.com/About/news/Pages/An-outstanding-ISCoS.aspx.
International Spinal Cord Society (ISCoS) meeting 2010 was posted by ESCIF.
To discuss any of its subject matter further please contact ESCIF.

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