Powerful stories for change – NCD Alliance Training, Geneva, May 2018

It was an incredible privilege, facilitating a two-day course with WSA Community Consultants for an inspirational group of people living with non-communicable diseases (NCDs), supporting them in their roles as advocates and campaigners for the rights and voices of people suffering as a result of NCDs.

Just Ideas’ Helen Garforth and WSA Community Consultants’ Wendy Sugarman have just got back from an amazing few days in Geneva with the NCD Alliance Our Views Our Voices campaign.

21 people from 13 different countries got together for an action packed two days of activities, information and story-telling – learning together about developing their individual stories into a compelling public narrative, and using that to mobilise communities and press decision-makers to show up and walk the talk.

All came with experience of living with or caring for people with a diverse range of conditions including cancer and cardiovascular disease, diabetes and psoriasis, dementia and depression. But more striking was the similarity: all were united in their strength at overcoming challenges, and their passion for using their influence to change the world – not for themselves, their families, or even all those living with ‘their’ condition, but to change the system that disempowers and restricts access to information and medicines for those living with all forms of NCD globally. What really struck me was the way NCDs (or what in UK we might call Long Term Conditions, or Chronic Illness) is seen not just as a health issue, or even a health equality issue but fundamentally as a human rights issue. It is always the poorest who suffer most from NCDs and who are more likely to die earlier – both at a global scale and within countries. Non communicable diseases are responsible for 70% of deaths worldwide but only receive under 2.2% of the health funding.

Another thing that struck me was the strategic nature of the campaign ask – in the UK we are becoming used to talking about prevention, and about ‘wider determinants of health’. The #ENOUGHNCDs  campaign takes that further: tackling the ‘causes of the causes’ (global and national policies, budgets and legislation); while also working at a very local level, providing information and mobilising communities. Personal stories and influences came together to make the training a humbling and exciting place to be.

What did I learn? Well, that rapping can be a very engaging way of getting messages across about avoiding sugary drinks, and that leadership takes many forms. And I took away a determination to be make the link between the global campaign to tackle suffering and injustice caused by NCDs with the work of Patients and Public Voice (PPV) Partners within NHS England. A similarly passionate cohort of people trying to shift the system to one that genuinely puts the voice of patients first, and works with patients to design services that help people get, stay and live well. The sense of solidarity and wider perspective is something that can only add to the training we are doing with PPV partners.

On a personal level I made some good friends and have become part of a very active global community making a difference. It’s inspiring to be hearing news of participants telling their stories to government ministers at 71st World Health Assembly over the last week, and to witness the way that people are supporting each other to continue their NCD advocate journey as they return home to many different continents.

Find out more…

The Chris K podcast  – “we are honoured to have wonderful advocates, health professionals, Journalists, a personal trainer and other amazing personalities from different parts of the world joining in on the show.”

Enough campaign – campaign for the right to a healthy life free from preventable suffering, disability and death for everyone, everywhere, now.

More about Our Views Our Voices and the NCD Alliance here.

3 replies
  1. Wendy
    Wendy says:

    Fantastic blog Helen and as we often say when we are co-training ‘What she said!’ – totally agree with your blog and can relate to your passion. Great as always to work with Just Ideas and brilliant to work with the NDC Alliance and an amazing group of people and campaign showing the strength of experts by experience and mobilising communities.

  2. Margriet
    Margriet says:

    Inspiring blog Helen! 21 people, 13 countries what an amazing audience!! Hmm I might consider writing a rap to encourage my son with his GCSE revision…!

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