New media project will give young Sickle Cell Warriors a big voice

With funding from the BBC Children in Need’s We Move Fund: Youth Social Action, The New Black Film Collective have launched their Sickle Cell Warriors project to give young Black Sickle Cell sufferers the chance to make a big impact by telling their story through film.

The project, led by Priscilla Igwe, founder of The New Black Film Collective and Sickle Cell Warrior herself will work with 20 young people, aged 13-19 years old, who all have Sickle Cell Disorder (SCD) or a Sickle Cell Trait (SCT).

Over the next 12 months, the Warriors will work together to raise awareness of the condition and use filmmaking to address some of the challenges people living with SCD face.

Priscilla Igwe said, “As a Sickle Cell Warrior myself, I’ve grown up with the condition and I’ve seen first-hand the challenges people face. This cohort of young people wants to make things better! They want to address the lack of knowledge with awareness-raising activities, but they also want change!

Health inequality, medical bias and racism have all contributed to extremely negative experiences for people with Sickle Cell. Our Warriors will document their journey for justice and quality healthcare through film. And along the way, they will work with experts in research, filmmaking, activism and communication to make sure that people in power hear our voices and start taking necessary action.”

SCD is most likely to affect people of African or Caribbean descent and is estimated to affect 12,000-15,000 people in the UK, with almost 300 babies each year born with Sickle Cell. 

A recent NHS Race and Health Observatory report noted that people with SCD are more likely to receive substandard care and poor hospital experiences that can cause avoidable harm. Something the young people are keen to address in their work.

Igwe continued, “These young people living with this condition know the dangers of presenting to a hospital as a Black person with SCD, there are many cases of people’s pain and requests for treatment not being taken seriously, with devastating consequences (notably the death of Evan Smith, which has led to the ‘No-One’s Listening Report - headed up by the Sickle Cell Society UK).

They’re passionate about the change that needs to happen, and brimming with ideas of how they can bring about that change.”

The young people will work with a range of experts for 12 months across four aspects of community impact:

• Research: working with a researcher, they will create unique studies into an aspect of Sickle Cell which most interests them and is in need of discovery or innovation.

• Reporting: working with a documentary filmmaker, they will learn interview techniques and how to shoot a short film to capture their journey, leading to the creation of content on the topic of Sickle Cell.

• Activism: working with an experienced activist or lobbyist to advocate and petition around Sickle Cell to drive policy change and social impact.

• Marketing: working with a marketing expert or publicist, they will learn how to devise, build and launch a digital media campaign to educate people about Sickle Cell and raise public awareness of the condition.

Alex Carter-Holmes and Mercy Shibemba, Project Directors for the WeMove Fund at BBC Children in Need said: “We’re delighted to hear that young people from the New Black Film Collective have launched their Youth Social Action project, as grantees of the We Move Fund, and we look forward to seeing how this develops over the next 12 months.”

John James OBE, Chief Executive of the Sickle Cell Society, “Young People living with sickle cell disorder and dealing with recurrent pain episodes find that every aspect of their daily life is disrupted. For some, their condition even impacts their education and career, affecting their overall quality of life. The No One's Listening report highlighted the service disparities, inequalities and and access issues that people living with sickle cell face. We hope that projects like Sickle Cell Warriors will help to raise awareness and support for young people and all those living with Sickle Cell.”

Children and young people who want to be part of the project can apply by 1 February 2024 to The New Black Film Collective website. www.tnbfc.co.uk/SickleCellWarriors