A group of researchers.

Perceptions of nystagmus and the impact of the Covid-19 pandemic

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.”

Read the full research article online here

Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.

A screenshot from the website of Geldards LLP and the words SEND with a COVID-19 pandemic

SEND within a COVID-19 pandemic

In his presentation for the Nystagmus Network virtual Open Day 2020, Kevin McManamon, Senior Associate, Educational Team, Geldards LLP sets out the current position of SEND support in schools in England and Wales.

To view Kevin’s and all the other presentations, please register here

Nadine smiles for the camera

Homeschooling and nystagmus

A Guest Post by author and nystagmus Mum, Nadine Neckles

So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’.

COVID-19 has changed a lot of what we do and how we do it, including how and where our children are taught.

2020 the year of vision, has been a real eye opener

Entering into lockdown I had big ambitions. I would replicate school as closely as possible. There would be structure. Each day, a bit of maths, English and therapy. My daughter, who has nystagmus, also attends a specialist school as she has learning difficulties and thus therapy is a BIG part of her curriculum.

It started off promising, with bundles of enthusiasm from me. I got to play, being ‘teacher’ at ‘Mummy school’ and I secretly loved it! But by Wednesday of the first week (yep, the first week) I was already drowning. Literally, not just by the reams and reams of paper I’d over zealously printed off, but in managing my child’s needs.

I’d done what I’ve done many times in the past and forgotten (or not considered enough) the impact of her visual impairment and other needs on her whilst at home.

After 30-40 mins in the morning she was done. Finished. Not able to do anymore schooling. This didn’t fit into my plan of teaching at least 4 hours. It also meant this tiny window of opportunity to teach had to be masterfully crafted to fit with her baby sister’s nap time.

Said sister is not one to follow my meticulously planned teacher timetable and I found myself running up and down trying to help them both at the same time. So, I needed reinforcement and thus the substitute ‘teacher’ Miss TV was brought in.

Curated TV shows were picked in an attempt to allay my guilt at not being as present as I wanted. But, just as a ‘solution’ was found, more challenges arose.

TV was adding to her fatigue. The iPad was the same. Screen time, although a great tool, was making her eyes more tired.

By the afternoon she was over stimulated. Her sensory issues seeming to grow each day. Chewing her clothes, shoes, hairbands indiscriminately. Her temperament was also changing across the day, getting more and more irritable.

I tried introducing playtime in the garden on lovely days, but very quickly she would ask to go indoors or stay outside whilst hovering in the available shadows.

I had to evaluate what I was doing and how I could change them to better fit for her.

My ‘ah ha!‘ homeschooling moments

  • Work around her. If she’s up for some activities run with it. If she doesn’t want to do P.E with Joe Wicks at 9 in the morning, it’s fine. Let her chill out!
  • Keep things simple. I was going wrong trying to emulate school. First of all, I’m not a teacher. I don’t have the patience or the enthusiasm at 9 in the morning to bring the energy or creativity needed each day. If I was showered before 9 I was winning!

Instead of trying to do everything each day, just pick one thing and chunk it.

10 mins playing with the abacus (yes she prefers tactile visual 3d objects when learning maths). 10 mins on the computer later on. Mix it in with play with her and her sister and bingo you have 30/40 mins of maths done.

  • Use your child’s interests. My daughter loves pretending to be a superhero and so ‘Mummy School’ used this as a motivator. We typed (font 24) together on the computer, to write lyrics to a superhero song.
  • We made up a superhero story using key words.
  • I sent her on missions around the house finding key objects, getting her to use her vision more specifically.
  • We played target ‘shooting’ number games in the garden.
  • We treasure hunted with key phonics sounds and she loved it.

It’s ok to move away from academic learning. Let go of the guilt!

My daughter clearly needs reassurance in these times. On a trip out to the park a passerby prompted a scared exclamation from her that she was ‘scared of people’. Being inside and kept away from friends and family was having an impact on her I hadn’t imagined. Indoors she’d seemed fine and at ease with our explanation about COVID-19, but how this manifested in a small child’s mind was, in fact, worry. So a deliberate decision as a family was made for daily trips out. Less emphasis placed on following the curriculum but more on her wellbeing.

  • Less is more

TV is great but it needed to be limited and thus Miss TV could only come to ‘teach’ after lunch. Having the morning free of screen time gave her space to feel … bored. And though this can be incredibly annoying for us parents (as we are normally the boredom ‘slayers’) what has transpired for us was a growth in her independent play.

  • Their eyes get tired. We know this, but I know I do forget in the whirlwind that is life. Being home during lockdown, I’ve seen more often my daughter’s wobble get more and more pronounced as the day goes on. She has always had a mild head turn but it has definitely accentuated in these times. She needs time to rest.
  • Stop helping so much

One thing I’ve learnt is that in my effort to support my daughter I also facilitate things too much for her, so she has grown used to always asking for help instead of trying to overcome the challenge herself.

Perseverance is a skill and very much linked to confidence. Being comfortable with getting things wrong is also very much part of our children’s journey.

As a parent of a child with needs, I always wanted to mitigate her feeling of helplessness. I wanted her to always feel she can ‘do it’ even if she needs help.

By sometimes putting in help prematurely, I’ve limited her chances in developing resilience and self confidence.

This lockdown has shown me that this is a key thing she needed to learn alongside her academic attainment.

Please don’t misunderstand me. Always have things in place that allow your child the best possible chance to access their work comfortably. But, separately, also encourage their own desire to work things out on their own.

The lockdown isn’t over and, while easing might be slowly coming in, we’re still far away from normality. This time has been revealing and a time I’m thankful for. There’s still enough time for further revelations but I will leave that for another post!

Key considerations during lockdown:

Keep a diary of any changes or concerns regarding your child’s eyesight. Although hospital appointments might not be happening as regularly, still speak to an ophthalmologist if you have any concerns that you feel can’t wait. Also keep in touch with your child’s QTVI who can provide help and support with homeschooling during this time.

Nadine is the author of ‘Can I Tell You About Nystagmus?’

A friendly guide, featuring a girl called Amber who explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help.

Purchased your copy of Nadine’s book from our online shop.

Neil sits on a bench.

Nystagmus in lockdown

In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person.

I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told.

Basically, I’m extremely short sighted and on a good day (with the correct lighting) I can clearly recognise a person’s facial features and movements from about two feet away. Any further and people just become a blurry shape. I also have very limited depth perception so cannot see stairs, pavement edges or judge distances.

When the pandemic started in early March, I began to feel more anxious about catching the virus myself and passing it to my fiancee, who had just come out of hospital. At this stage I wasn’t really thinking about how it would affect me from my disability standpoint.

Each day I was travelling on the train to work. I was getting more and more worried about taking the virus home with me. On 18 March it was announced that schools would be closing and all staff would be working from home. That announcement was such a huge relief for me; my fiancee was still recovering and the thought of her or the kids catching this virus terrified me.

A few days later I was called by work and advised that we would each be working a day in school on a rota basis, as our school would be providing childcare provision for key workers.

I can’t describe the sheer panic that I felt during that phone call. By this time, we had isolated ourselves as a family and were happy to live that way for the foreseeable future, risk free. Now I was faced with the prospect of venturing out of the house. This is the first time I can recall thinking about how I was going to cope without being able to see other people clearly.

The first journey was nerve racking, to say the least. However, when the bus pulled in, I did feel a small sense of accomplishment. The train journey home was helped by the fact that I was the only person travelling in a carriage, so my anxiety about being close to others didn’t really come into play.

As the weeks have gone by my anxiety levels have diminished. I certainly feel a little braver when I leave the house for work each time. But those anxieties never really leave you.

The next big issue for me was leaving the house for shopping. The first few weeks of lockdown, our daughter was happy enough to pop to the local shop at quiet times for the essentials. We knew this would have to change as we were slowly eating our way through the supplies in our chest freezer. This is when my second major pang of anxiety kicked in. How can I maintain a social distance from others when I can’t see them clearly and have no idea how close they are to me?

My fiancee and daughter went shopping a few times to quieter supermarkets, but I felt more and more guilty that I wasn’t able to assist with this. So I made the stubborn decision. I was going to brave a walk across the road to the shop on my own.

My fiancee is so supportive of me and knows that when I’ve got my “I’m doing this for my own self confidence!” head on, its best to leave me to it. So I arrived at the front of the store, disabled lanyard on, white symbol cane in my hand. I could make out a massive queue of people stretching around the corner and had no idea of where to go / what to do. The staff there are extremely helpful, but even so I came close to a few people and was told in no uncertain terms I was too close and what was I thinking of. It was a nerve-racking experience.

I’ve always relied on being able to pick items up, check labels to ensure I’m buying the right thing. This was now not allowed. I opted for the easy way out that day and picked up a few things I already knew the locations of. Thank goodness they didn’t change the layout that day.

When I got to the till I started to panic again. What do I do? Where do I stand? Then I heard a familiar voice call my name. It was someone I knew. I was saved! Since that day I’ve been shopping with the family on numerous occasions, but I always feel more of a hindrance than a help, because I can’t social distance. I’ve raised many an angry eyebrow by nearly bumping into people in shop doorways and aisles.

COVID-19 has presented us all with so many life-changing challenges and experiences and I hope I’ve been able to give you a small insight (no pun intended) into what it’s like for a person with a visual impairment.

I would encourage everyone to share their experiences during this pandemic, because by sharing we are hopefully helping others to understand and make life that little bit easier for people who have found themselves less able to be self-reliant over the past few months.

Stay safe everyone!

Fight for Sight logo.

Fight for Sight launches survey on impact of Covid-19 on people with eye conditions

Eye research charity Fight for Sight has launched a survey to gather broader insights into the personal impact that Covid-19 is having on people with sight loss and eye conditions.

The charity is inviting those affected by sight loss or an eye condition to participate in the survey, to help its campaign on behalf of people with sight loss and strengthen the case for urgently needed eye research funding. The survey will examine the impact that Covid-19 is having on people’s access to treatment, personal wellbeing and concerns for the future.

At the beginning of 2020 Fight for Sight carried out one of the largest surveys of people with sight loss and blindness to understand the personal impact of sight loss. With the advent of Covid-19, the charity is following up with further research to gain insight on how the pandemic has had an impact. All results will be published later in 2020. 

Prior to the Covid-19 pandemic, eye research was already woefully underfunded, with only one percent of national research funding invested in eye research, even though twenty percent of people in the UK will experience serious sight loss or blindness in their lifetime. The problem is also on the increase – figures show that the number of people in Europe with the leading cause of blindness, age-related macular degeneration, is projected to hit 10 million by 2050.

Chief Executive at Fight for Sight, Sherine Krause, said: “This is a challenging time for everyone, but we know from anecdotal evidence that the current pandemic and lockdown is having a particularly harsh effect on those living with eye conditions and sight loss. We know that science ultimately has the answer to so many challenges – the power of science will help us stop the pandemic in the coming months, and we are working to ensure it will also help us stop sight loss and blindness in the future. We urgently need the input of those affected so that we can understand how they have been impacted by Covid-19 and campaign on their behalf. The findings will also help us to make the case for the importance of eye research now and in the future.”

Participation in the survey involves an online questionnaire in which respondents answer questions on how Covid-19 has impacted their lives. The survey will take no more than ten minutes to complete. Participants will help Fight for Sight in its mission to transform the eye research landscape and secure vital funding for pioneering research.

To participate in the survey, you must be aged 18 or over, living in the UK, and personally have an eye condition(s).

You can take part in the survey at this link.

Sue with knitted mascots.

Sue’s still knitting!

From now until 26 May, this is Sue’s daily schedule:

45 minutes yoga

8 hours working at the Nystagmus Network

1 hour walking her dogs

Then carry on with her Two Point Six Challenge for the Nystagmus Network: knitting 26 mascots by 26 May.

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

2 knitted mascots.

Sue’s Two Point Six Challenge

Sunday 26 April 2020 was to have been the date of the London Marathon with runners raising £millions for UK charities.

The Nystagmus Network’s runner, Adam, is still training to run in the postponed race in October.

Meanwhile, the organisers have launched The Two Point Six Challenge to help save the UK’s charities by giving us an opportunity to raise some funding to keep us going. It’s also completely safe and a bit of diversion during lockdown.

The Nystagmus Network’s Sue is amongst those taking up the challenge.

The idea is that you set yourself a target based around the numbers 2, 6, 2.6 or 26.

Sue says: “I can’t run a marathon, but I can knit!
Nystagmus Network mascots usually wear woolly hats and scarves, but for my 2.6 challenge I’m going to knit 26 mascots wearing running kit by 26 May. Please sponsor me if you can and wish me luck!”

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

People queue with trolleys in a supermarket car park

Your food shopping experience

How are you getting on with shopping for food?

What are your experiences of queues, social distancing, assistance available in store?

Have you managed to secure online delivery slots?

The Nystagmus Network continues to lobby alongside other bigger VI charities (please see this recent Daily Telegraph article) for the rights of people with nystagmus and other sight conditions to have priority treatment for both online and in store shopping, alongside other disabled people, and for there to be more understanding about the need to pick up packets and tins to read the labels if a fully sighted friend, family member or member of store staff is not available/allowed to assist.

We will also raise a question with Sight and Sound at our forthcoming webinars about the best aid to reading labels.

Please contact us with your thoughts and comments.

Thank you

Nystagmus Network staff under lockdown

Nystagmus Network staff team members, Sue, Sara and Debbie are all adjusting to the current pandemic and a slightly different way of doing things. Though they all usually work from home, some things have changed.

Debbie is currently furloughed and spending important time at home looking after her family and home schooling her daughters.

Sara in her NHS uniform

Sara is a total hero, working hard every day on the NHS frontline in a busy doctors’ practice, but still finding time in the evenings and at weekends to support the Nystagmus Network, keeping in touch with our members, posting out shop orders and providing support and information on social media.

Sue continues to run our information and support services by phone, email and online. She is also busy organising our Nystagmus Awareness Day activities and our virtual fundraising opportunities and making sure the charity can survive the current pandemic.

With meetings now taking place by Zoom, rather than face to face, Sue is occasionally joined on screen by her loyal ‘co-worker’, her rescue Irish Setter, Bella.

Join the Nystagmus Network for The 2.6 Challenge

Calling all nystagmus heroes …

You, your family and friends are warmly invited to take part in The 2.6 Challenge from Sunday 26 April to help to save the UK’s charities.

The Covid-19 pandemic has had a devastating effect on charities, with the cancellation of 1,000s of events and the loss of £billions in fundraising income.

In response, the organisers of the biggest mass-participation sports events across the country have come together to create a new campaign to raise vital funds to help to save the UK’s charities, including the Nystagmus Network.

The 2.6 Challenge will launch on Sunday 26 April – the original date of the 40th London Marathon, the world’s biggest one-day annual fundraising event.

We’re asking you to take part in an activity of your choice based around the numbers 2.6 or 26 and fundraise or donate to support the Nystagmus Network with twopointsixchallenge.co.uk

People of all ages are taking on The 2.6 Challenge with all kinds of activities – from walking, running or cycling 2.6 miles, juggling for 2.6 minutes, to holding online workouts with 26 friends.

The ideas and options are endless!

Just remember, please, that you must follow Government guidelines on exercise and social distancing.

Most people are taking part from Sunday 26 April, but you can do your activity whenever suits you best.

There are just five simple steps :

1.      Dream up your 2.6 challenge – if you need help there are lots of ideas here

2.      Head to twopointsixchallenge.co.uk to donate £26 – or the amount of your choice ­– to the Nystagmus Network or to set up a fundraising page

3.      Ask all your friends and family to sponsor you and challenge them to do their own 2.6 Challenge

4.      Complete your challenge

5.      Share a photo or video of your challenge on social media using #TwoPointSixChallenge

We hope you’ll join the nation in The 2.6 Challenge to support the Nystagmus Network and help to save the UK’s charities.

THANK YOU for your support

Visit The 2.6 Challenge website here