National Usher syndrome helpline launched

A new helpline for those living with User Syndrome has been launched by Deafblind UK and Deafblind Scotland.

Usher syndrome is the UK’s most common genetic cause of deafblindness, combining hearing loss with progressive sight loss.

The condition often leads to isolation and mental health challenges, and can also be a barrier to education, employment and independent living.

Those living with the condition, as well as their families, carers, and the professionals supporting them, can now access support via the free helpline.

The helpline, the first of its kind in the UK, began operating on Friday 13 February.

It is available between 10am and 1pm, Monday to Friday, excluding bank holidays, and will be accessible in both English and British Sign Language.

It was created due to a need for specialist, condition-specific support for people living with the combined impact of sight and hearing loss, Deafblind UK said.

The charity added that the helpline should be seen as ‘a first point of contact’ for anyone affected by Usher syndrome.

Information and guidance, as well as general support, will be provided. Callers may also be signposted to other specialist charities and organisations, depending on their needs and locations.

The aim is to connect users to timely support wherever they are in the UK, Deafblind UK said.

Guidance will be offered for every stage of Usher syndrome, from diagnosis to later-life support.

Nikki Morris BEM, chief executive of Deafblind UK, said: “Too many people affected by Usher syndrome are left navigating complex systems of health, social care and support alone.

“This helpline creates a clear, trusted first point of contact where people can get accurate information, emotional support and practical guidance in one place.”

Isabella Goldie, chief executive of Deafblind Scotland, called the partnership “a major step forward in how we support people with Usher syndrome across the UK.”

“We have heard that those with Usher syndrome can often fall through the cracks due to gaps between services (often those focusing only on sight or hearing loss) – or simply not knowing quite where to turn for the type of help they might need,” Goldie said.

She added: “This helpline recognises the unique nature of dual sensory loss and provides a dedicated space where people can be understood, supported and empowered.”

Morris added: “We are proud to launch this service in partnership with Deafblind Scotland. By combining our expertise, networks and lived-experience knowledge, we are creating a service that is truly specialist.

“We hope it becomes a vital part of the support infrastructure for people living with this complex condition.”