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Northumbria Healthcare teams up with Jo Milne to launch film – with backing from The Osmonds

A leading NHS trust, an inspirational advocate and a famous singer have come together to launch a new film aimed at making a real difference to the lives of people with Usher syndrome.

Northumbria Healthcare NHS Foundation Trust has teamed up with Gateshead-born Jo Milne to create an educational film which will help to raise awareness about the condition both within the NHS and the wider public.

A special event to launch the film took place at The Grand Hotel Gosforth Park in Newcastle on Thursday (November 25), where trust representatives and Jo were joined by special guest Merrill Osmond, of The Osmonds, who is also involved in campaigning on deaf awareness issues, and a keen supporter of Jo’s charity, CUREUsher.

The film, which gives viewers an insight into what life is like for Jo as well as hearing from medical professionals, was produced by Northumbria Healthcare’s charity, Bright, with funding from NHS Charities Together.

The Trust will be making sure staff watch it, as well as sharing it with other healthcare organisations, to improve understanding of how best to support patients with the condition when they attend healthcare settings.

Usher syndrome is a genetic condition that affects both hearing and sight. Jo was diagnosed as profoundly deaf at 16 months old, but it wasn’t until she was in her teens that she was found to have Usher syndrome and only at 30 that she was registered as severely sight-impaired.

In 2014, she underwent a cochlear implant operation which gave her the ability to hear for the first time. Her story was picked up by the world’s media and the clip of her implants being turned on was viewed by well over 10 million people.

Despite this, she says that Usher syndrome is not widely known about or understood, even among healthcare professionals, so Jo is grateful for her partnership with Northumbria Healthcare to help spread the word.

“I am one of 10,000 people living with Usher syndrome in the UK,” she said. “But I feel extremely under-represented; there’s no voice, there’s no spokesperson.

“We all need a sense of belonging, so there’s an urgent need for the wider public to understand Usher syndrome. It’s exhausting, it’s de-humanising and ‘making do’ to straddle between two worlds of support in the deaf and visually-impaired worlds is not acceptable anymore.

“Northumbria Healthcare has been incredible and this is a ground-breaking and life-changing achievement to recognise those of us living with Usher syndrome, and we hope the whole country follows this example.”

Elaine Henderson, the Trust’s director of nursing, added: “We were very happy to work with Jo on this film, as we are always trying to push the boundaries of what a healthcare organisation can do and how it can improve people’s lives.

“We will ensure that this film is used to help educate all of our staff and it will be shared far and wide in the hope that it can support not only healthcare staff across the country, but also those in medical training as well as the public.”

Back in 2015, Jo became an ambassador for the Osmond family’s charity for deaf children, The Hearing Fund UK – which is led by Merrill’s son Justin, who is deaf, as were two of Merrill’s older brothers.

“Before my mother passed away, she told me she wanted me to follow through with doing everything in our power to raise awareness around the world,” Merrill said.

“Jo is a fighter and the Osmonds totally support what she’s trying to do. We are giving 100% backing for what she’s trying to accomplish and we are grateful to the Trust for their involvement with this film.”

Brenda Longstaff, the Trust’s head of charity, said: “When Jo approached us asking for support, we were only too happy to get involved and I’m delighted that we have been able to fund this important film, which should have a lasting and wide-ranging impact.

“Through our award-winning D/deaf awareness programme, we are committed to increasing understanding about the needs of our patients with hearing impairment and, importantly, improving the delivery of care to them.”

Media contact

Ben O’Connell, media and communications officer

Benjamin.O’Connell@northumbria-healthcare.nhs.uk or 07833 046680.