“You can really change a life with a sight test”

Back then there was almost no published evidence of the unmet eye care need for people with learning disabilities. I was fortunate enough to join a study to gather this data, sponsored by a regional health authority. This led to working with the wonderful Dr Maggie Woodhouse at the Special Olympics in Cardiff where we gathered data on over 1000 athletes. Consequently, Maggie, alongside others, submitted a paper, and we finally had published evidence of the huge levels of unmet need amongst this patient group. But there was a long road ahead.

When SeeAbility conducted eye tests in special schools, half the students it saw had significant visual problems, but, shockingly, over 40% had never had their eyes checked

The strength of a sight test

You can really change a life with a sight test. I can’t tell you the number of people whose supporters have assumed that they don’t want to, or can’t, feed themselves, or can’t use a phone or eye-gaze communication technology. However, having glasses and supporting carers to understand how somebody’s vision works, changes everything.

In 2008, after working with the Special Olympics USA, I become involved with SeeAbility, formerly the Royal School for the Blind. As a social care provider supporting people with learning disabilities and sight loss, the charity was keen to involve eye care experts in its work to provide support for this patient group.

Working with the charity, initially I became an advisor, and then a trustee, alongside ophthalmologist Paul Ursell, in order to provide that expertise. Our ambition has always been to improve eye care at every stage, to effect systemic change and ensure from routine eye tests to cataract surgery, to sight loss rehabilitation, that people with learning disabilities get the right support at the right time.

Since then, SeeAbility has become the go-to organisation on eye care for people with learning disabilities. In addition to an in-house vision rehabilitation specialist team, SeeAbility developed easy read eye care resources, have an information and advice service, and produce SeeAbility trustee, Professor Rachel Pilling’s, innovative Bradford Visual Function Box.

This work, highlighting the fact that no-one is too disabled to have an eye test, is vital to reducing health inequalities

Research recognition

Research collaborations between 2011 and 2013 provided more all-important peer-reviewed evidence of unmet eye care needs across this patient group. We showed that if you have a learning disability, you are 10 times more likely to have a significant visual problem. For children, this goes up to 28 times. When SeeAbility conducted eye tests in special schools, half the students it saw had significant visual problems, but, shockingly, over 40% had never had their eyes checked.

Further collaboration with eye care and learning disability sector bodies and people with lived experience led to the establishment of the Framework for special schools eye care. And all of this eventually led the Department of Health and Social Care and NHS England to commit to providing an eye care service in every special school in England, changing the lives of an estimated 165,000 children.

For adults with learning disabilities, SeeAbility brings the same level of expertise. Working with the same sector bodies, it developed the LOCSU Easy Eye Care Pathway, providing support and reasonable adjustments for people with learning disabilities across North West England and South East London. SeeAbility employs eye care champions with lived experience who are driving change to get this set up across the country.

This work, highlighting the fact that no-one is too disabled to have an eye test, is vital to reducing health inequalities.

However, SeeAbility knows that inequalities do not just lie in healthcare. Only 5% of people with a learning disability have paid employment. This shocking statistic drives SeeAbility’s Ready, Willing and Able supported employment team to support as many people as possible into a career they can be proud of.

Other teams at SeeAbility support people within specialist residential homes and supported living services to thrive in the life they choose.

Through my career I learnt that change comes from collaboration and communication, from raising awareness and changing hearts and minds, while providing evidence in the form of data and case studies

As a social care provider, SeeAbility continues to evolve, sharing learnings and collaborating with other charities and providers to give the best evidence-based support. I am continually impressed by how the team works together with people to support them to live ambitious lives and achieve things they never thought possible.

Through my career I learnt that change comes from collaboration and communication, from raising awareness and changing hearts and minds, while providing evidence in the form of data and case studies. There is still much to do, and I know SeeAbility will continue to lead change, champion equality and be an example of excellence. Because everyone deserves an equal right to an ambitious life.

About the author

Gordon Ilett is an optometrist and outgoing chair of SeeAbility.