Health care should focus on health, not just illness
Cajsa Helin Hollstrand is chairman of Unga Reumatiker (Young People with Rheumatism). She is passionate about young rheumatologists being able to fulfill their dreams. She wants to see the focus of care is widened. Health should have a bigger place in conversations about care.
Who are you?
My name is Cajsa Helin Hollstrand, I am 23 years old and have been chair of Young People with Rheumatism since May 2019. I am studying law and am currently writing my degree project. When I became a student five years ago, I became active in Young Rheumatism.
I was diagnosed with juvenile idiopathic arthritis, JAS, Juvenile Ankylosing Spondylitis, when I was 14 and quite quickly thereafter, I started going on rehabilitation trips. There I could listen to how children and young people had different degrees of support in their everyday lives. I myself had both my mother and a sister with rheumatic diseases, and that meant I had a lot of support and understanding. But I understood that it was not like that for everyone. Then the thought first occurred to me that I would like to be involved and try to make things better.
What is Young People with Rheumatism (Unga Reumatiker)?
It’s a Swedish non-profit organization that works towards its vision that all young people with rheumatic diseases should be able to feel the joy of life and be able to fulfill their dreams. Our mission is to create meeting places for children, adolescents and young adults with rheumatic diseases and spread knowledge and information about these conditions. Our assignment also includes pursuing public opinion in health care and promoting research. Our members are up to 30 years old.
The organization includes five regions and a local working group which primarily works to create local meeting places for our members. At the national level, we organize four annual camps for different age groups. We also have patient representatives who work on impact work and represent our members in, for example, meetings with care and support people who are there to support our members in their everyday lives with things like lectures in schools.
In 2020, we have chosen to focus especially on our members' schooling. This is based on the Unga Reumatiker Report, which was published in 2018. The report showed that schooling was associated with many problems for our members. For example, nearly six out of ten of our school-age respondents said their teachers did not understand their rheumatic disease. We take this very seriously and want to put special focus this year on bringing about a change.
Why does your organization want to collaborate with Elsa?
Being an active participant in one's own health is very important. We often talk about self-care, but to make that happen it is important to have tools, knowledge and research-based information to lean on. Elsa will contribute to knowledge, research and also guidance about what we can do to feel better. Being able to see patterns in everyday life so we can use them to improve our health. We think this is very important and that is why we value a collaboration that promotes this!
Elsa should be able to help me take responsibility for my health as much as possible. Sometimes I reflect a lot on how little I remember how I felt at a particular time. Being able to use something like Elsa where I can log, keep track and see patterns will help me have more knowledge about myself!
I believe in the importance of feeling in control, and I know that comes with a great responsibility. I can influence my care, my feelings and give myself the information I need to draw conclusions. I hope this approach will also be more accepted in health care, and that I as a patient in a care meeting will be able to show my data and have a dialogue about it with the team. In this way, as a patient, I can become more involved in my health, care and treatment. I believe this is one of the most important success factors for increased patient satisfaction.
What is your experience of health care meetings right now?
I find healthcare often forgets to ask the most important questions: the ones that are important to me specifically. In order for me to feel joy in life, it is important I can do what I want in everyday life and fulfill my dreams without my rheumatic illness limiting me. But because dreams and well-being are personal, those important issues will also vary from person to person. Healthcare professionals need to find out what is important for each patient and actively work for it.
We strive for health, but for me, as someone with chronic illness, it’s obvious that health care is fixated on disease. The very word ‘health’ is often forgotten, even though it’s right there in the word ‘healthcare’! It is important how doctors and others in healthcare choose to talk to those of us who have a chronic illness. Shouldn't we spend more time talking about health and not just illness? I would like to widen the focus to not only talk about the treatment of symptoms but also talk about prevention. It is so important!