During the second day of the ISCoS congress all the special interest meetings took place including the Consumer Meeting which once again was hosted by ESCIF. We had chosen to call our session “a narrative” to underline that we wouldn´t cover all issues involved in the comprehensive management of SCI and, therefore, would not be presenting a chronological account of all stages in the “career” of a newly injured SCI person. Nor was it a regular workshop in the sense that we intended to cover a specific topic in detail but rather different issues where consumer advocacy organisations have played an important role in pushing the agenda forward. In particular, we wanted to consider how and when active SCI consumer organisations might intervene support and supplement services offered by the professionals in the health sector. The session was chaired by Gunilla Åhrén, the Vice-President of ESCIF, since Jane Horsewell, the President of ESCIF, unfortunately was unable to attend the ISCoS congress.
We had invited some active (and vocal) SCI consumers, who are all involved in some form of consumer advocacy, to share their experience and ideas with us. Lucy Robinson, a peer support coordinator at Stoke Mandeville in the UK, talked about how the CARF standards make a good tool when setting up a programme for peer support. Erika Nilsson, a project coordinator at Spinalis in Sweden, talked about the importance of collaborating on an international level and the benefits that can be gained especially in the area of SCI where the “population” is rather small. This becomes even more relevant when considering specific issues faced by a part of that population. Kim Anderson-Erisman, an Associate Professor University of Miami in the US, talked about consumer initiative to promote the translation from small trials to large clinical trials which will demand international collaboration. She pointed out some good examples and concluded that it can be done. Tara Jeji, Program Director at the Ontario Neurotrauma Foundation in Canada, talked about consumer engagement in research and especially underlined the need for a strategy for consumer engagement to ensure active and informed partners. She mentioned that there therefore is a need for an education for consumers regarding research. Finally, Gunilla Åhrén, ombudsman for Personskadeforbundet RTP in Sweden talked about their work towards a centralisation of SCI care and rehabilitation. She told us about a cost-comparative study they had done, between decentralised care and the ESCIF model, which clearly shows that there is rather less expensive with centralised care.
One of the plenary sessions during the second day focused on wearable Sensors. Roger Gasset, an associate professor at ETC Zurich, gave a very interesting speech regarding the numerous wearable health sensors that have become very common and popular today. However most of them will not give a correct reading for a people in wheelchairs. Therefore, they have developed a new device that can give more accurate data and that has low weight and long battery power. At the moment they are processing data for recommendations to wheelchairs users how many km/day they need to get enough exercise and stay healthy for example 6 000 m/day would be equivalent to walking 10 000 steps/day.
On the last day of the conference we attended a couple of session including a plenary session with Lester Butt, Ph.D. in Psychology at the Craig Hospital in Colorado, who gave a speech in the art of failing. He started by saying let´s have fun and we did even though he during the whole speech reminded us how we are all letting the patients down during rehabilitation pointing out that this is true both on the macro level i.e. the healthcare system and down to the personal level i.e. the individual health professional. He gave us quite a philosophical journey and urged us all to think and think again.
Apart from having attended numerous of sessions we´ve also had the opportunity to mingle with friends and colleagues from different consumer advocacy organisations, health professionals and sponsors. We also made some new friends like the President and Vice-President of the Greek Paraplegic Organisation. We discussed a potential membership in ESCIF and they asked for help from ESCIF to develop their organisation further.