Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study
The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.
In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.
Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”
Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”
The little girl in the picture has nystagmus. She is enjoying some drawing at a Nystagmus Network event some years ago. At the time she had just started school and thought it would help children like her if people understood nystagmus better. One of the first things she wanted other children to know was that nystagmus isn’t catching. She was worried that people wouldn’t want to be her friend.
She started to write a diary about her experiences at home and at school. Each diary entry began in the same way: “When I was a baby a doctor told my mum I was blind. I wasn’t blind, of course, but I did have nystagmus. Now I’m seven and I’ve still got nystagmus. This is how I see the world through wobbly eyes …” The diary was published in the Nystagmus Network newsletter, Focus.
That diary became the basis for the Nystagmus Network booklet for young children, ‘Wobbly Eyes’. This digital publication explains nystagmus in child-friendly language and gives children the words to talk about it themselves. It remains our most frequently downloaded information document.
Extract from the original diary published in FOCUS in September 1999
Yesterday at school some of the children in my class had to have a medical. They called my name out, so I had to go. First they tested our eyesight. I thought that was a bit silly, because they know I’ve got nystagmus. I could only see the big ‘H’ because the nurse was holding the chart too far away.
She asked me if I wore glasses and I said no. I was about to explain about my nystagmus, but she wasn’t listening. She just went on to the next person.
They gave me a letter to take home to my mum. She was cross, because the letter told her she had to take me to the optician straight away. I heard mum talking on the phone to the school nurse later on. She was still cross. She told them that Mr Calver* tests my eyes and that the school nurse doesn’t need to. I don’t think the school nurse really understands about nystagmus. But Mr Calver does, because he’s very clever.
*David Calver was at the time Consultant Paediatric Ophthalmologist at Guy’s and St Thomas’s Hospital.
In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published.
The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually does.
It seems that members of the public had a greater understanding of challenges faced by individuals with nystagmus if they had met someone with nystagmus or if they had even heard of the condition.
This suggests that greater public awareness of the condition could be achieved through increased exposure of the condition through media and other online methods of promotion.
What this tells us, is that raising awareness of nystagmus is beneficial for everyone.
Future work It is thought that further qualitative questionnaire studies regarding nystagmus could be carried out to identify specific issues that individuals with nystagmus have faced during lockdown and whether these are common to other disorders of vision.
A new e-learning course to develop knowledge, skills and confidence when assisting people with a visual impairment has been launched by award-winning social businessman and Nystagmus Network trustee, Dan Williams of Visualise Training and Consultancy.
‘Visual Impairment Awareness for All’ is ideal for anyone who regularly interacts with people living with visual impairment as it focuses on the practical and emotional effects and provides solutions to everyday challenges.
It covers identifying sight loss, eye conditions and their effects, emotional impacts, accessibility, assistive technologies, communication, mobility and sighted guiding techniques.
Having lived with a visual impairment from childhood, Dan fully appreciates the challenges and thanks to his lived and professional experiences, he understands what assistance is needed and has designed the courses accordingly.
He says, “There are so many aspects to living with a visual impairment, so I wanted to develop a course that will raise awareness and provide the knowledge and skills needed by everyone who regularly engages with people who have a visual impairment.
For example, there is often a fear of offending someone by offering assistance and not knowing how to guide, so we provide the skills and confidence needed to overcome this.”
The course is ideal for family members and friends and can be used as an induction or refresher course for businesses and organisations as part of their CPD portfolio.
The cost is £30 per learner and it can be completed online from any location.
Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.
In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.
The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.
We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the appeal.
… and our promises to you, the nystagmus community
Thanks to your support and generosity throughout 2019, the Nystagmus Network can confidently resolve and promise that in 2020 we will
ONE – provide even more support and information for everyone living with CN or AN, their friends and family and the people helping them to reach their potential and enjoy a better quality of life
TWO – raise even more awareness of this complex condition to bring about a better understanding of its affects and how schools, employers, companies and organisations can all help people living with nystagmus
THREE – foster and fund even more research into genetics, diagnostic testing and potential therapies so that nystagmus symptoms are better managed, outcomes improved and we can all hope for prevention and even a cure in the future
The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support.
Eye care and Health Professionals armed with information to improve lives of patients with sight loss
The pack complements the ‘Seeing Beyond the Eyes’ CET workshops currently touring the UK which raise awareness of the difficulties faced by patients diagnosed with irreversible sight loss. It contains valuable information on local sight loss charities, Eye Care Liaison Officers (ECLO),Vision Rehabilitation Workers, low vision assessment services and Habilitation Workers. It also lists national organisations supporting people with sight loss and condition specific charities. Daniel Williams of Visualise said “It is vital patients with sight loss are referred immediately to sight loss services that can enable their independence and help them deal with a difficult time in their life. However Optical professionals can’t refer if they don’t know who they are referring hence why we have created such a resource pack and training roadshow.At the age of 8, I was diagnosed with Retinitis Pigmentosa, a gradual loss of sight, and had consultations with Dispensing Opticians, Optometrists and Ophthalmologists and at no point was I referred to any support services which is why I am so passionate about empowering eye care professionals with the awareness of what is available for people with sight loss to live independent lives”
Links to professional resources are also included such as the Government’s Access to Work grant scheme, an A – Z list of eye conditions and Thomas Pocklington Trust’s guide to designing a home for someone with sight loss.
Charles Segal, Dispensing Optician from D and H Hantman Optometrists said “It was one of the best CET courses, I have attended. “I had no idea that there was such a range of services, it made me fully aware of where we can send people and not just refer to the eye hospital. It was a highly informative meeting where the attendees actually met people who are dealing with or have dealt with people with sight loss,it was the first time I have actually met someone who has Retinitis Pigmentosa. It was moving and inspiring to hear how people with low vision get-on with their lives. The course has given me the confidence to help people who enter my practice and give them advice. The details of suppliers of low vision aids and daily living solutions are also invaluable for people facing sight loss during their transition to a different way of life”.
On Nystagmus Awareness Day 2018, the Nystagmus Network’s Information and Development Manager, Sue, shared her nystagmus story and explained why it’s so important to continue to raise awareness of nystagmus.