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Julie Jaye Charles, NHS Board Advisor and Lead on Co-Production Advocacy, NELFT NHS Foundation Trust

Bringing the voices of people with disabilities from Black African and Asian communities to the table

A force for good, Julie Jaye Charles is a fighter. She has won multiple national awards for her community work, including a CBE. She channels her boundless energy into projects to benefit the disadvantaged, and advises others to “Make a difference!”


"Co-production is like a yo-yo. It’s top-down, then bottom-up. Then we meet at the top and stay there."

Currently, Julie is Board Advisor and Lead on Co-production Advocacy at North East London Foundation Trust, the first role of its kind in NHS England. Julie explains: “Co-production isn't a new thing. It's been done for many, many years in the voluntary communities’ sector. But it's very new to the public and private sectors.” She is in the process of establishing a framework to develop programmes that bring service users and carers closer to the services they access, by putting their voices and views at the centre. “Co-production is like a yo-yo,” affirms Julie. “It’s top-down, then bottom-up. Then we meet at the top and stay there.”


Julie is keen to bring the voices and views of under-represented groups to the table, and one group she sees as especially under-represented is people from Black African and Asian communities with learning disabilities. Julie acts as a connector at a grass roots level, reaching out to people in these communities and bringing them onto programmes in the Trust.


"My house wasn't wheelchair adapted. I thought, ‘What am I going to do? How am I going to live? How am I going to support my two children?"

Julie then feeds back to the Trust’s Executive board and Non-Executive Directors. She explains: “I guide them through what I've done for the past two months, what the state of play is within the trust as regards inclusion. I signpost inequities.”


Throughout her career, Julie’s personal circumstances have had a huge influence on the professional direction she has taken, starting in 1983 when she set up ‘The Nappy Gang’. Pregnant, faced with the prospect of being a single working mum, based in a tower-block estate in London without parks, playgrounds or affordable childcare, and with her parents living abroad, Julie decided to take action: “The quickest way was to set something up myself. So, I did a door-to-door campaign across the estate of five tower blocks where I lived. Everybody said we needed to do something.” Julie’s efforts paid off and she was awarded comic-relief funding to set up a creche, which later became a registered nursery in the basement of her tower block. “All the residents got together and painted cartoon characters and made it really wonderful,” remembers Julie. “And it’s still going today!”


"Racism as a discriminatory practice happens widely in the NHS. We should be given the choice of developing our own forums ... to build something regionally that will be a force to be reckoned with.”

In 1995, a 9-month stay in hospital followed by a diagnosis of lupus and prolonged steroid treatment left Julie unable to walk and a wheelchair user. She explains: “When I got home, my house wasn't wheelchair adapted. I thought, ‘What am I going to do? How am I going to live? How am I going to support my two children?” It was a difficult time for Julie, and led to a determination help others. It became her dream to make sure that other people who got ill or who lived a deprived or vulnerable life, and didn't know where to turn if they got unwell, had somewhere they could go for advice and support.


Julie’s experience led her to reach out to vulnerable people across the country, and she discovered that there was an overwhelming under-representation of people with disabilities from ethnically diverse communities. “Before I knew it,” she remembers, “I'd set up an organisation that started off as a small advisory forum within the family service that later became a charity.” Over time, it grew bigger and became the Inequalities National Council, a national body recognised for its work, providing advocacy, mentoring and support. Julie was its CEO for 22 years, had 24 people in her team and was endorsed by 9 universities.


Julie has a clear idea of what should be done systemically to promote diversity and improve equity in the NHS. She states: “Racism as a discriminatory practice happens widely in the NHS. We should be given the choice of developing our own forums, where we can have discussions, or private spaces, where we can build something regionally that will be a force to be reckoned with.”


The energy and passion to do good for the disadvantaged runs in Julie’s lifeblood. She speaks of her grandfather and father who were both politicians: “My dad became a community activist. His goal was to close the poverty gap in communities across the Caribbean,” she says. “They were drivers, they took the good with the bad. They never gave up!”


 

Genevieve Shaw, Founder and Editor-in-chief

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