Research reveals challenges faced by working age people with degenerative sight loss

Posted on: Wednesday 8 May 2019

A ground-breaking research project led by national sight loss charity Retina UK has revealed the many challenges faced by people of working age with degenerative sight loss.

The unique Working Age Group Project aimed to identify gaps in services that working age people with inherited progressive sight loss would benefit from in their working lives.

Led by Retina UK, hundreds of people contributed their views and experiences to the project which was funded by Thomas Pocklington Trust and supported by Visionary and RNIB.

Services at the point of diagnosis, particularly on how someone’s inherited sight loss condition might develop, was the number one priority of a number of ideas assessed through research focus groups, surveys and interviews.

“Just letting me know that Access to Work even existed would have been helpful. I struggled for years in a job I loved trying to get around. It was only when I had a referral to Occupational Health that they told me about Access to Work. It has literally revolutionised my home and work life.”

Information, access to and training on the government’s Access to Work scheme, assistive technology and reasonable adjustments, for both people with a visual impairment and their employers, were also identified as a priority, not only at diagnosis but also throughout an individual’s working life.

“Despite being diagnosed 30 years ago, nobody told me about Access to Work until three years ago. Even then I stumbled across Access to Work myself.”

“During my working life I was never able to gain access to somebody who used to technology in a practical way to understand better how I could implement and use the technology on a practical level.”

“Technology is moving quickly, it is our best hope at continuing a normal life but my experience is that I haven’t a clue what is available.”

There was also demand for opportunities to learn new skills and connect with others with inherited retinal dystrophies to discuss work and career matters.

“Having a network of other people who also suffer from RP would be useful. Not everything needs to revolve around work sometimes it would just be nice to socialise and meet and chat with someone else going to the same issue.”

“Peer support is essential so people newly diagnosed don’t feel isolated and frightened for the future.”

Retina UK’s Chief Executive, Tina Houlihan, said the findings would be invaluable in informing the continued development of the practical information and support the charity provides on employment matters. She said:

A big thank you to all those who took part in the focus groups, interviews and online surveys as part of this study.

“Retina UK was increasingly concerned that those of working age with inherited sight loss face a number of challenges in accessing work and staying in employment.  That is why we, and our sector partners, were eager to gather the views and experiences of our community. Sadly, the research confirms our concerns were well founded.

“It is simply not acceptable that so many in our community are having negative experiences in the workplace, or while trying to gain employment, due to their sight loss condition. Here at Retina UK we are determined do our best to change this.

“This report gives us the robust evidence we need to enhance our support services, and to call upon others to do the same, to ensure all those who live with inherited sight loss are able to fulfil their ambitions in the workplace.

Hundreds of people contributed to the research by sharing their views over the phone, online and in person, over an 18 month period. This is the first project of its kind focusing purely on those with inherited sight loss.

Download a copy of the full report in PDF format.

Download a copy of the full report in Word format.

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