Publish date: 22 February 2022

Northumbria Healthcare leads the charge to boost awareness of Usher syndrome

A photograph of two women and a man. They are all wearing facemasks with a clear covering over the mouth. The woman on the left is holding a cane.

A North East NHS trust is leading the way nationally in support of an Usher syndrome awareness day, building on its partnership with an inspiring champion for the cause.

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

The production was launched at an event in November 2021 with 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.

Now, the trust is getting behind Jo’s bid to launch an annual Usher syndrome awareness day in the UK to ensure that more people learn about this genetic condition which affects both hearing and sight. March 2 has been chosen as it is the birthday of Charles Usher, the Scottish ophthalmologist whose research led to his name being given to the syndrome.

An inaugural event is also taking place at Westminster on Wednesday, March 2, following the recent creation of an All-Party Parliamentary Group (APPG) for Usher syndrome, chaired by Shadow Minister, Alex Norris MP, who has praised Northumbria Healthcare for its leading role in the awareness campaign so far.

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

In the run-up to the awareness day on March 2, Northumbria Healthcare will be using the Charities Together network to share the film to colleagues around the country, to improve understanding of how best to support patients with the condition when they attend healthcare settings.

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.

Jo has explained how despite being one of around 10,000 people living with Usher in the UK, it remains ‘exhausting’ at times due to a lack of understanding.

“The film is a fantastic step in the right direction for helping to boost awareness so that I and others with Usher don’t feel so voiceless,” she said. “It was fantastic working with Northumbria Healthcare on this pioneering project, so I am delighted that they are continuing to push forward and do what they can to educate people about Usher syndrome.”

The trust’s head of charity, Brenda Longstaff, added: “We agreed to work with Jo on the film because we recognised how important it was to ensure that healthcare professionals understand how they can support patients with Usher or similar impairments.

“That’s why we are so keen to continue this campaign to raise awareness by sharing the film as Jo’s story is a simple and moving way to spread knowledge, understanding and compassion.”

Ben O’Connell, media and communications officer, Northumbria Healthcare

Benjamin.O’ or 07833 046680.