This is another post in our series Reflections Careum Congress 2014. Here, guest author Marianne Ween shares her thoughts self-management support in chronic illness.
Reading about Kate Lorig’s participation in the Careum Congress 2014 has reminded me of the value of the program she represents, the Stanford Model. The model has given professional, academic support to the importance for patients to take action in governing their own lives, even if parts of their life is governed by a disability or chronic disease.
Insights from Norway – an ‘ocean’ of peer competence
Both health personnel and peer organisations have profited from the program in Norway. Over the course of the last ten years, thousands of Norwegians have participated through our licence. We have remained faithful to the structures of the program but have become increasingly aware of a need to adapt and change it thus finding our own way. The foundation for this work has been peer organisations and the hard-earned competence of their volunteers.
Studieforbundet Funkis, my workplace, supports learning and competence in our 67 member organisations. Each member represents one or more disabilities or chronic diseases, and together they organise 320.000 individual members. This is the pool – or ocean – of competent people we invite to develop new programs, programs that we make available for the organisations to use in their turn. These organisations also give us the possibility to disseminate the knowledge we have developed. The traditional high level of organisation in the Norwegian society means that most people with disabilities or chronic diseases have a connection to a peer organisation.
Moving on to new ways of self-management support
The group designing our new program are all peers; have all participated in the Stanford courses, are trained leaders and have the support of their organisations behind them. This ensures empowerment on several levels: Personal, group and system, and gives to Funkis a guarantee the new program is peer initiated, developed and tested.
I believe that respect for peer competence gives the depth to our program that the Stanford Model lacks. I certainly see what differences our model is given, differences I ascribe partly to the fact of peer control: Two important changes are: They put less weight on medical and ‘expert’ advice, and more emphasis on how to continue governing your life after the course is completed. But most important: Peer leadership of the courses, peer control of leadership development and compulsory peer support throughout the course. The strong support of their organisations for our peer representatives has given them the confidence to make these changes. In addition, their work would not have such a great impact if the organisations did not support this collective work.
Respecting peer competence
This way of working has also given me, privy to the process, an even greater respect for peer competence, especially when channelled through the organisations. To work with peers using their experiences for a broader goal, to represent not only their personal challenges, but also that of their diagnosis group or even that of the disabled minority in our society – is humbling. Organisations with the will and the competence to change services, treatment and the society as a whole are invaluable to any who work in this field.
What are your thoughts on involving peers into co-creating self-management support? What are your experiences in terms of peer organisations? I am looking forward to your comments!