Wendy is the Director of WSA Community Consultants with a background in youth and community work prior to that. Wendy recently returned from a trip from Geneva where in partnership with a colleague from Just Ideas she delivered a training the trainers’ course for people living with non-communicable diseases for the NCD Alliance.

Lived Experience Driving Change – The NCD Alliance: Our Views, Our Voices

There is a Ghanaian saying thatone broom can be easily broken but a group of brooms together is hard to break.’. This was shared with us by Chris K, an advocate for Non Communicable Diseases (NCDs) from Ghana as part of the Our Views, Our Voice training, the course was held in Geneva for people living with NCDs from 11 countries across the globe. The course participants comprised of two people living with NCDs from each country or region and one national or regional alliance member who would be part of the training team once back in their native country.

Along with Helen Garforth from Just Ideas, I was privileged enough to co-facilitate this fantastic and inspiring group of people for the NCD Alliance as part of their Our Views, Our Voices initiative.

Last year, Helen and I facilitated the workshop in Geneva for 23 people living with NCDs, training people in public narrative and mobilising communities who then went back to their countries and were involved in the NCD movement there. This year, the three-day programme focused on rolling out the skills learnt through training people to become trainers so they could go back to their countries and mobilise their communities.

Non Communicable Diseases include a whole range of conditions. The five most common conditions are cancer, diabetes, Chronic Obstructive Pulmonary Disease (COPD), heart disease and mental health, but there are many other conditions that are also non-communicable. They affect populations globally more than other conditions but yet have a pitiful investment which is an area the NCD Alliance is addressing and challenging on a global basis.

Our lovely group spanned 11 countries, with six country Alliances – Ghana, India, Japan, Kenya, Mexico and Sri Lanka and 2 regional Alliances – Eastern Mediterranean and the Healthy Caribbean Coalition. What was wonderful to see over the course was the strength that the group got from being together which made Chris K’s saying one of the mantras of the three days. As Haruko from Japan said:

‘Super empowered and energetic training. I was alone when I was diagnosed, but NOW I have company to live with. Our story has power to change the world.’

The honest sharing of lived experience was really striking. This included being stigmatised, not having a voice and feelings of being alone. Some of our group had been very alone and the fact that they were now helping others and working with their national alliances to advocate for change was not necessarily something they could’ve imagined being their story. We looked at the power of public narrative and used the Marshall Gantz theory to help the group think of their stories of self, us and now. This is explored in much more depth in the NCD Alliance’s publication on meaningful involvement (see here).

A lovely example of someone whose confidence grew over the few days was Jude from Sri Lanka. On the first day, Jude was very shy and didn’t want to talk in English to the group – he said he could understand English but wasn’t confident enough to speak it.  By day three he was sharing his story in English and led a great energiser for the whole group with some cool dance moves to ‘I like to move it, move it’! Jude is a young man with diabetes who felt excluded and alone when diagnosed as a child. He is now a leader of youth camps for other young people with diabetes and a role model. Jude also recognises the economic challenges people with NCDs often face if they are not able to work or have to balance caring for their condition with earning a living. He strongly supports young people with NCDs to develop their skills and help them to think about how to make a living. You can check out Jude’s woodwork business here.

What was lovely to see was the way the group came to know and care about each other in a very short time. The commonalities they found were amazing to see despite coming from very different countries and contexts and having a range of conditions. One exercise we enjoyed was using At My Best cards (which were very kindly discounted by the lovely people at  (At My Best). Using the cards we asked the group to work in pairs to share their stories and pull out key strengths both for themselves and their partner. The strength identified helped to reflect on the skills used to mobilise communities and drive change. This was hugely effective and helped some of the group reach another level of understanding.

I arrived home from Geneva feeling driven to support the 22 participants to be the best trainers they can be in their countries. Their passion, positivity and energy were a real gift to me over our three days together and each person made a massive contribution to the group. I feel lucky to have been given the chance to support this group and along with Helen, we will now see them returning to run training in their home countries. Working with the NCD Alliance, we will continue to support them and check-in through webinars and the sharing of the in-country evaluations.

There is synergy through much of our work as we often support communities to share lived experience; it is a key-value and part of our ethos here at WSA Community Consultants. It has also been a strong focus of our work on health and we are lucky enough to be working with a number of recognised organisations such as NHS England and the Francis Crick Institute, supporting them in delivering training around lived experience and Patient and Public Voice. Our more generic community work also looks to build on personal stories and lived experience, focussing on the assets and skills of individuals to achieve change.

Wendy Sugarman

Managing Director – WSA Community Consultants

Acknowledgements:

Thanks to Helen Garforth from Just Ideas for fantastic collaborative work; Dr Cristina Perez-Parsons, Manjusha Chatterjee and Luis Encarnacion the Capacity Development team from the NCD Alliance; our wonderful participants who we learnt so much from – Francis, Jaime and Patricio from Mexico; Rana from Lebanon, Enas from Eqypt; Chitrika, Thamilini and Jude from Sri Lanka, Yuko, Haruka and Hitoshi from Japan; Seema, Prachi and Jyotsna from India; Chris and Labram from Ghana; Jenna from Barbados, Diana from Guyana and Asha from Trinidad; Beatrice, Foulata and Patrick from Kenya.