Stroke on the agenda at the NCD Alliance Our Views, Our Voices Training Workshop

Jelka Jansa of the Stroke Support Organisation Slovenia tells us about the recent NCD Alliance Our Views, Our Voices Training Workshop

How did you get involved in attending the NCD Alliance workshop in Geneva?

NCD Alliance sent an open call for applications. I am an occupational therapist working in an acute neurological hospital and I have become familiar with patient support organisations both locally and internationally, especially in the field of stroke. Therefore I responded to the questions and have used my own perspectives of being a main carer for my mum. She has been a stroke survivor for more than 20 years and has now additional health problems, including dementia and problems with breathing.

What was the focus of the workshop and what were the topics that you discussed?

The focus of this workshop was to train people living with NCDs to become an advocate and spokesperson.

The objectives of the workshop were:

• To become familiar with NCDs, the 2018 UN High Level Meeting, policy landscape and advocacy opportunities.
• To increase knowledge on mechanisms of participation/forms of involvement
• To develop communication skills leveraging personal stories to call for change
• To develop advocacy skills to mobilise communities and call for change
• To increase confidence in being a spokesperson and advocate for NCD prevention and control
• To develop a menu of actions to take forward the Advocacy Agenda of People
• Living with NCDs and take advantage of the UN High Level Meeting on NCDs

How does this work connect with the issue of stroke awareness, prevention and support?

It links together very well. First of all, 90% of strokes are linked to 10 avoidable risks, by joint actions, including people living with NCDs, professionals, and policy makers, it is more likely that national governments will take necessary actions to control stroke incidence. In 2016,there were almost 14 million incidences of first-time strokes worldwide (Global Burden of Disease 2016). Their access to acute treatment and long term support is not even around the globe. It is important to call on the UN to guide national governments to invest into stroke care. For example, in Slovenia, rehabilitation access is limited and there is no community follow up as there is no rehabilitation taking place in patients’ homes.

What are the actions for you or others to do after attending this workshop? 

Spread the word about  NCDs and the UN High-Level Meeting campaign called ENOUGH. And invite other NCD groups to become involved with the “Our Views, Our Voices”. Stay connected and participate at events taking place just before the July  and September meetings in New York. The virtual space, facilitated by the NCD Alliance, provides a Community of Practice on the Meaningful Involvement of People living with NCDs. It is open to anyone who is affected by NCD and is willing to collaborate:  https://communities.gcmportal.org/plwncd  

Who else attended and did you identify any common issues in relation to the health conditions you work on?

There were representatives from other NCDs from all over the globe. There are differences, depending on the region. For example, in Africa one of the major issues is raising awareness and access to primary care. In many other regions people are facing problems with pollution that has multiple impacts on human health. Finally, many diseases still carry stigma with them. However, the common bottom line is that people living with NCDs have the power to make change regardless of location. The governments need to take action for having healthier citizens.

How can other SSOs get involved in the work of the NCD Alliance and the run up to the High Level Meeting on NCDs in New York later this year?

To visit Our Views, Our Voices website at: https://ncdalliance.org/what-we-do/capacity-development/our-views-our-voices   and get involved.

To join https://communities.gcmportal.org/plwncd   to share their own opinions to be able to further the Advocacy Agenda of People Living with NCDs.