The turning point: Knowing when it's time to stop driving

Former NSW Minister for Health and distinguished public figure, the Hon. Jillian Skinner AM, has opened up about the frightening moment she knew it was time to stop driving at night, shedding light on the emotional and practical challenges faced by those living with macular disease. 

“I was driving my young granddaughter home from swimming lessons one winter evening, around 6:30 pm,” reflects Jillian, who has been living with age-related macular degeneration (AMD) for 13 years. “It was dark, and I realised that if someone had run across the road in front of me, I wouldn’t have seen them until it was too late. That was the moment I lost my confidence in driving at night—I stopped because I didn’t want to put myself or others at risk.” 

Jillian’s experience reflects a reality faced by many people living with Australia’s leading cause of vision loss. New research from Macular Disease Foundation Australia (MDFA), in partnership with the University of New South Wales, reveals that a significant number of people with macular disease have had to stop driving due to vision loss. 

The study, with results launched as part of Macula Month 2025, surveyed nearly 1,500 Australians living with macular disease and found that 35% of respondents have stopped driving. Among those who ceased driving, 67% attributed their decision to vision loss, while 18% followed their doctor’s recommendation to stop driving. Additionally, 9% made the choice based on advice from family members. 

Participants also reported feeling unsafe or a potential risk to others on the road, experiencing a loss of confidence behind the wheel, or even having been involved in an accident as factors that led to their decision to stop. 

“I remember one of our survey respondents saying that it was like half the road had disappeared whilst they were driving, which is a very frightening situation to be in,” said Dr. Kathy Chapman, CEO of Macular Disease Foundation Australia.  

“Macular disease compromises a person’s central vision, and if left untreated or if it is an untreatable kind of macular disease, it can significantly impair their ability to detect vehicles, pedestrians, or potential hazards. Macular disease can also make it challenging to judge distances, read road signs, or react to dangers, especially in low-light or highly reflective environments.” 

For many, the consequences of ceasing to drive go beyond mobility; they also result in a loss of independence and social isolation. Jillian’s personal experience reflects these concerns. She explained, “I do now feel less independent. After moving to a new address, I find it hard to access transport—most cabs and Uber drivers won’t tackle my steep driveway. I often rely on family members, but sometimes it’s just not feasible.” 

MDFA’s research further highlighted the emotional toll on those living with macular disease: 

• 79% of those who have stopped driving reported feeling less independent. 
• 38% feel socially isolated after giving up their driver’s licence. 
• 29% of people with macular disease are less satisfied with life because they can no longer drive. 
• More than half (56%) of respondents still driving expressed a high level of concern about losing their licence, and 73% feared losing their independence. 

Dr Chapman emphasised the importance of supporting those affected by vision loss: “Our research shows how stopping driving can profoundly affect people’s lives. Family members and carers must be aware of these challenges and provide sensitive support.  

“We want to remind people living with macular disease that they are not alone in navigating these kinds of challenges. There is help available through MDFA’s free Eye Connect support service, which offers resources and guidance on how to prepare for life without driving.” 

MDFA says one of the most pressing issues highlighted by the research is the need for consistent rules around vision tests across all states and territories for driver licences. Currently, different states and territories have different requirements for vision tests to obtain or maintain a licence. 

MDFA is calling for standardised vision assessment rules for driver licence tests across Australia. This would help ensure safety and fairness for all Australians on the road, for both drivers and pedestrians. 

“People can have vision loss from macular disease and not be aware of it without a vision test,” said Dr Chapman. “As Australia’s population ages and the incidence of macular disease grows – it’s estimated 2.1 million people will be impacted by the disease by 2030 – we must ensure that everyone has access to consistent regulations that account for vision health and safety on the roads.” 

“Consistency in the use of vision tests when obtaining and maintaining a driver licence will help ensure that every Australian, no matter where they live, will be safe behind the wheel or crossing the road.” 

This Macula Month, MDFA encourages people to book an appointment with their local optometrist for a comprehensive eye test. To gain a better understanding of their risks, people can take a Check My Macula quiz to learn whether they have major risk factors for AMD and diabetic eye disease. www.CheckMyMacula.com.au

More information

About Macula Month    

Macula Month is Macular Disease Foundation Australia’s annual campaign each May to raise awareness of macular disease – Australia’s leading cause of severe vision loss and blindness.    

About Macular Disease Foundation Australia    

Macular Disease Foundation Australia is the independent national peak body fighting for the sight of the macular disease community. Our purpose is to reduce the impact of macular disease.     

We work with the community and the health system to promote early detection, reduce progressive vision loss and to save sight. We provide a range of free, tailored resources and support services to help people live optimally with macular disease. Our advocacy work amplifies the voice of our community to influence and collaborate for positive outcomes. We invest in vital research, working towards better management, treatments, and cures. Our work is supported by the generosity of the Australian community.    

About macular disease    

Macular disease covers a range of conditions that affect the central retina (the macula) at the back of the eye. People with macular disease progressively lose their detailed central vision, and ability to recognise faces, read, drive and undertake many aspects of daily life. The most common conditions are age-related macular degeneration (AMD) and diabetic retinopathy, including diabetic macular oedema.  One in seven (approximately 1.5 million) Australians over the age of 50 have some evidence of AMD.  Diabetic eye disease affects between 300,000 and 400,000 Australians – the leading cause of preventable blindness among the working-age population.    

Posted: 7 May 2025