Douglas reflects on attending the 18th ICIC in Utrecht and how medical language still affects the balance of power.
I’ve just returned from representing the ALISS Programme and the Health and Social Care Alliance Scotland (the ALLIANCE) at the18th International Conference of Integrated Care in Utrecht, which brought together researchers, clinicians and managers from around the world who are engaged in the design and delivery of integrated health and social care. The conference was hosted by the International Federation of Integrated Care (IFIC) a not for profit network that brings people together to advance the science, knowledge and adoption of integrated care policy and practice.
In my role as ALISS Programme Manager I delivered a presentation on; “Tackling the social determinants of health: maximising community assets to help people receive the right support, in the right place, at the right time”. Feedback from the audience confirmed the presentation was well received, with the main point being the simplicity of ALISS; that one place to go to find the information on local assets (services) which support health and wellbeing.
With over 750 people attending from 50 countries, over the 3 days, there was a great deal of discussion, debate and opportunity to learn. So, rather than go through every day of the conference and what happened during each workshop I will give you a flavour of my highs and lows over the 3 days.
It was inspiring to hear of the work of John Oetzel, Ray Wihapi and Carey Manuel of the University of Waikato, New Zealand, on their work to prevent chronic lifestyle diseases in Māori men and indigenous communities. Source. (this link will take you away from our website) This workshop emphasised indigenous communities are still living with historical injustices of colonialism, and work is still needed in this area.
The main highlight for me was the theatre performance by Care and Culture (this link will take you away from our website) a Dutch organisation who help elderly people connect with their surroundings through dancing, singing and other activities. They focus on something most of us take for granted: touch, or to be more precise skin to skin and human to human contact. The shake of the hand, the cuddle with your loved one, the arms around each other at a music gig that’s lost when people are put into nursing homes and only touched as part of their care or medicalised treatment. After reading this (obviously!) please spend a few minutes and watch this video (this link will take you away from our website) The dancing and skin contact is around the themes of intimacy and touch and is emotional without being sexualised and draws our fundamental need as people to be loved, be touched and be valued for who we are and not what condition we live with.
Surely this is the essence of person centred care?
However, one session underlined my struggle to accept and understand some of the language in the field of Integrated Care and how it fits into the concept of person centred care.
In this session the presenter discussed their patient recording system; for each person, they had a dashboard style page that detailed name, blood type, etc… and amongst the “benign” words were the terms; “Social Burden”, “Mortality Calculator” and a “Dependency Score”. Now, I don’t have a medical background, but surely health professionals and partners can find words that don’t generate such negative thoughts and feelings and still be useful in a clinical context.
I’m not saying there is not a need to understand the risk profile of a person, but if we’re on a journey to a “person centred” health system, and all the rhetoric says we are, then I think the use of this type of language is degrading and in my opinion at odds with a values-based system. I made the point to the presenter that I would be dismayed to find out that my mother had a mortality score and that score was used as a consideration as part of my mother’s care. The answer riled me. I’m paraphrasing here but the sentiment is clear; “this language is used across the board, it’s language that is accepted in the scientific community and its language we have always used”, so, with the presenter looking at me like I had asked a silly question, we moved on.
I believe a good conference should inspire you, challenge you and dare I say it, highlight some areas still needing work. I definitely think we’re on the right track in a person centred integrated health and care system, but I think there is still work to do in understanding the use of words holds power and has the ability enthuse and enrage all in the same breath.
I’ll finish on this, I’m glad I heard the language and I’m glad it made me write about my experience, and I hope in a very small I have made you think; language is power and power should always sit with the person.
For a more in-depth understanding of Integrated Care check out The International Journal of Integrated Care (IJIC) website (this link will take you away from our website) an open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.