Five insights from the APPG on Eye Health and Vision Impairment

A meeting of the All Party Parliamentary Group on Eye Health and Vision Impairment met in Westminster on 23 November to discuss data in the eye health sector, the pilot of a new study into the UK’s eye and hearing health, and how statistics are essential in tackling health inequality. OT went along to hear about these crucial topics first-hand.

1 There is no national data on vision impairment and blindness, and a clearer picture is needed

Jim Shannon, co-chair of the APPG on Eye Health and Vision Impairment alongside Marsha de Cordova, explained that there is no cohesive national data on blindness and vision impairment in the UK.

“There is no nationwide population data on the prevalence or the causes of vision impairment, or the utilisation of services,” he said.

Professor Rupert Bourne, professor of ophthalmology at Cambridge University Hospitals and Anglia Ruskin University, is also the lead for the vision loss expert group, which provides data every five years to the World Health Organization.

After being invited to present the academic case for effective refractive error coverage and effective cataract surgical coverage at the United Nations in New York on 12 October this year, ahead of World Sight Day, Bourne had to admit to the lack of data that is available in the UK.

At the APPG, he called it a “major impediment,” and emphasised that it was unusual from both a national and an international perspective.

2 A pilot of the UK National Eye Care and Hearing Study will commence next year

After six years of work, funds are pledged that will see 1000 over 50s being invited to join a pilot UK National Eye Care and Hearing Study in 2023.

When Australia conducted a similar survey a huge unmet need was identified, with a third of those over 50 having a “referable condition which could be improved” with intervention, attendees to the APPG heard.

The study will offer a comprehensive picture of the UK’s eye and hearing health data for the over 50s, Bourne said.

He suggested that the benefits of collecting and utilising this data will include reduced costs, compliance with international standards, and the opportunity to look into prevention when it comes to eye health – something that isn’t done currently.

Post-2023, the long-term plan is to scale the study from pilot to national level.

3 Certification of Visual Impairment data isn’t everything

Dr Catey Bunce, honorary consultant in applied medical statistics at Moorfields Eye Hospital, told attendees that the certification of visual impairment (CVI) rate is “the tip of the low vision iceberg” and that “CVI rates absolutely do not equate to blindness rates.”

“We know that there are many people who do not seek help when they start experiencing either problems with their sight or their hearing. They put both down to age and don’t go and seek help at all,” she said.

CVI data, Bunce said, is “the thing that we can see. Underneath it is this entire low vision iceberg, and that’s what Rupert's study will actually address.”

She believes that the study will “facilitate the development of an exemplar system and capture robust data,” but that it will also prevent the ripple effect of sight loss on individuals.

Bunce quoted statistician Tim Harford, who stated that: “Without statistics it is impossible to tell the truth, to understand the world so that we can try and change it for the better.”

4 How quiet and methodical collecting of data proves the worth of interventions – even when this wasn’t planned

Bunce also spoke about the value of “capturing data quietly and methodically,” which means that, when a time of need comes along, you’ve got it to hand to support your statements.

She used an example from the Royal Marsden Hospital, which saw data being utilised effectively to stop diabetic eye disease being the leading cause of sight loss.

Collection of data on sight loss due to diabetic eye disease highlighted that the disease’s prevalence doubled between 1990–1991 and 1999–2000, so the hospital began a diabetic screening programme.

In 2014, a study showed that diabetic eye disease was no longer the leading cause of sight loss. The Government were happy with this result, Bunce said, because it demonstrated the impact of a screening programme that they hadn’t ever planned to measure the results of.

5 Danger in rural areas

Professor Richard Parish, executive chair of the National Centre for Rural Health and Care and professor emeritus at the University of Chester, reminded attendees that vision impairment is an important public health issue, not just something that affects individuals.

Approximately 10 million people live in rural communities in England, he said, and these communities are getting older as more young people leave for cities.

Parish emphasised that “meaningful action starts with quality data,” and that we need to know who is suffering from what, and where they are, in order to be able to plan.

He spoke about how sensory loss is exacerbated in rural areas. In the countryside only 6% of households do not own a car, Parish said, and if visual impairment means people cannot drive they become increasingly dependent on social care – something that is already much more stretched in rural areas than it is in cities.

He also noted that sensory loss negatively affects mental health, and that mental health provision, like social care, “is much worse in rural communities than elsewhere in the country, right the way through: early intervention diagnosis, crisis resolution, rehabilitation, psychotherapy, old age psychiatry, and community health team provision is poorer at every single stage.”

Parish said: “Failure to identify those people with a potential compromise to their sight or their hearing at an early stage is a major lost opportunity. We know that early intervention contributes to prevention and to successful management.”

There is a lot of conversation about value for money, he said, but “We also need to give money to the things that we value.”

Parish added: “The future is not something we travel to – it is something we build.”