Male, walking to along a country path on his way to work

As LHON tends to affect people in the early part of their life, being able to find or continue work is often a concern. Working after an LHON diagnosis may feel difficult at first, but with some adaptations and a supportive employer, finding and retaining work is possible. There are also schemes and organisations that can help and support you throughout the employment process.

Government support

Access to Work

The Access to Work scheme provides advice and support to help you overcome work-related obstacles so you can start working, stay in work, or start your own business. It can also give you grants towards extra employment costs, including equipment and adaptations to premises and existing equipment. You may also be able to get help with fares to work if you can’t use public transport and a support worker to help you in your workplace or with job interviews.

The scheme is designed to meet the additional costs an employer might incur by employing a disabled person and to meet the requirements of a disabled person so as they can carry out their role effectively. It is only available in England, Wales and Scotland.

Intensive Personalised Employment Support

Intensive Personalised Employment Support is one-to-one support and training to help you into work if you have a disability. This includes help in identifying what work you’re able to do, matching your skills to work that’s available and getting training to help you find work.

To access this support, go to your local Jobcentre Plus and ask to speak to a work coach about Intensive Personalised Employment Support.

RNIB employment services

RNIB Helpline

The RNIB has a UK wide network of employment specialists and advisers that offers a range of services that can help with your job search, including:

  • Referral to an employment specialist
  • Advice about your entitlements to benefits and concessions
  • Courses to boost your confidence and get practical advice, information and resources
  • Support in setting up your own business

The exact nature of this support differs from region to region, so you should contact the RNIB Helpline and get a referral to an employment specialist to see what services are available in your area.

You can contact the RNIB Helpline by phoning 0303 123 9999, email helpline@rnib.org.uk or say: “Alexa, call RNIB Helpline” to an Alexa-enabled device.

RNIB online jobseeking course

Based on the experience of the RNIB professional employment advisors, this course is designed to help people with sight loss decide the next steps to take when thinking about employment. The course includes top tips for a successful approach to looking for work, including where to find opportunities, as well CV and interview help.

Other organisations

Blind in Business

Blind in business specialises in supporting blind or partially sighted undergraduates or graduates looking for support in finding work. They also give support to those losing their sight who are already in employment, as well as colleges, universities, parents and employers.

Telephone: 0207 588 1885

E-mail: info@blindinbusiness.org.uk