A family smile for the camera. A mother is holding a young child in her arms and the father is holding a cup of tea.

The Nystagmus Care Pathway

Why we need a pathway

Getting a diagnosis of nystagmus for a small baby is an anxious time if you’ve never heard of the condition before. It’s even harder if all the medical information seems a bit bewildering and you don’t know where else to turn for support.

That’s why NUKE (the Nystagmus UK research group) is working to put together the ‘Nystagmus Care Pathway’, a set of guidelines for hospital eye clinic staff to follow so that everyone gets answers to their questions and finds their way to sources of support.

Read more here about why nystagmus clinicians and support providers, including the Nystagmus Network are working for a Nystagmus Care Pathway.

The value of immediate, clear information about nystagmus for families and signposting to sources of support cannot be emphasised enough. Generally, their questions fall into three categories: What is the cause? How will it impact the sight and general wellbeing? What is the solution?

Pinpointing the cause has many benefits for patients. An accurate diagnosis empowers families to talk about nystagmus and advocate for themselves and/or their children. If the cause is genetic the family can know the probability of other children being born with nystagmus.

Parents especially want to understand how nystagmus will affect developmental milestones, education, social interaction and, ultimately, career choice. The first 17 years are of more immediate significance than whether or not the child will eventually be able to drive. Talking about encouraging a baby to explore, the support available in school, learning to ride a bike and making friends will enable parents to understand their needs and make them better prepared to support them and to be positive about their future.

Following the initial shock of diagnosis with a previously unheard of condition, most parents gradually accept that treatments are limited and there is no cure. At this point they can begin to understand the surgical and pharmaceutical options available, refraction and low vision aids, what will help, what will not help and why.

Where clinicians lack the time or experience to answer some of these questions, it is important to steer families away from Google and signpost them instead to national and regional organisations such as the Nystagmus Network, local sight loss organisations, the ECLO or QTVI.

“Your organisation has been a godsend for our families to understand and help our little one. I truly believe some of the advice has enabled him to thrive – and without you that wouldn’t have been possible.” – a parent to Nystagmus Network 2019

“Without the help of you guys and Jay Self at Southampton I would still be rocking in a corner not knowing what to do.” – a parent to Nystagmus Network 2017

The role of Certificate of Vision Impairment (CVI) registration

Based on anecdotal evidence to the authors over 35 years, issuing a child or an adult who has nystagmus with a CVI (Certificate of Vision Impairment) is in most cases very beneficial, enabling them to access support they may otherwise be denied. For instance, it is difficult for a child with nystagmus to get an EHCP (Education Health and Care Plan) without first having a CVI.

A CVI also helps in claiming benefits (Universal Credit, DLA or PIP) accessing sports and entertainment venues, obtaining travel concessions and using the DWP’s (Department of Work and Pensions) Access to Work scheme. Very few patients find CVIs a stigma. They can choose to revoke their CVI if, for example, their vision is good enough to apply for a driving licence at age 17.

Regardless of the effect on visual acuity, nystagmus is a lifelong vision impairment affecting quality of life. Registration can be at the consultant’s discretion.

“I just thought I would let you know the patient you very kindly supplied all of the information for regarding nystagmus and registration was registered SI (Sight Impaired) yesterday. The patient is so very pleased, as this will now enable them to pursue their plans.” – an ECLO to Nystagmus Network 2021

Patient perspective

Ideally, when patients are discharged from hospital they should have a realistic understanding of the impact of nystagmus. This should extend beyond VA and include spatial awareness, challenges with eye contact, facial recognition and visual crowding, the null zone, time to see, the variability of vision and whether or not the nystagmus is part of a progressive or largely static condition.

Families also need to be aware of the potential social and emotional aspects of nystagmus. Research suggests that the cosmetic consequences of nystagmus (abnormal head posture, flickering eyes, difficulty making eye contact) can contribute to social awkwardness, feelings of isolation, low self-esteem and depression.

The challenge for clinicians, at a time when we are still learning about the impacts of nystagmus and how to measure them, is knowing where to strike the balance. On the one hand, patients should not be discharged thinking “nystagmus is the end of the world”. On the other, they should not leave a hospital eye department thinking nystagmus will have no impact at all.

“With thanks to the Nystagmus Network for the sense you help to make of what having nystagmus means and how we and families like ours can support our children to lead amazing lives.” – a parent to Nystagmus Network 2020

The logo of Ecclesiastical Movement for Good - a hand over a heart on an orange background.

Nystagmus Network wins £1,000 Movement for Good award

Nystagmus Network wins £1,000 Movement for Good award

The Nystagmus Network has won a £1,000 Movement for Good award from Ecclesiastical Insurance Group thanks to nominations from the public.

The Nystagmus Network is one of 500 winners in specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million to charities this summer.

Although at least 1 in 1,000 people live with nystagmus, when someone is diagnosed it’s usually the first time they have heard of it. This can be a very anxious experience, especially when doctors don’t have the time to explain the full implications of the condition, which is very complex, or how it may affect the sight and offer sources of further information or support.

The £1,000 Movement for Good donation to the Nystagmus Network will pay for a year’s supply of nystagmus leaflets or postcards for eye clinics around the UK. This means that, at the point of diagnosis, patients and their families will be signposted to the charity for information and support, welcomed to the nystagmus community and be able to ask all their burning questions – and, most importantly, understand the answers!

Members of the public were invited to nominate causes close to their hearts, with 500 gifts of £1,000 available for donation. Over 13,000 charities were nominated by more than 210,000 members of the public.

Sue Ricketts, Executive Information and Development Manager at the Nystagmus Network says: “As a small charity supporting a big nystagmus community, the Nystagmus Network is grateful to each and every person who nominated us for this donation.”

Mark Hews, Group Chief Executive of Ecclesiastical Insurance Group, says: “We would like to thank every single person who took the time to nominate a good cause as part of our Movement for Good awards. Ecclesiastical, the fourth largest corporate donor in the UK, is a unique financial services group. We are owned by a charity which means all available profits can be given to the good causes that are so important to our customers. As a company whose purpose is to contribute to the greater good of society, charitable giving is at the heart of our business. We know that £1,000 can make a huge difference to the incredible work that charities do and we’re looking forward to seeing how this financial boost will change lives for the better.”

The logos of Fight for Sight and the Nystagmus Network

Two new nystagmus research projects funded

Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly.

The team at University of Leicester, led by Dr Frank Proudlock, will study 4 groups of people: with albinism; with idiopathic infantile nystagmus; with achromatopsia; without nystagmus. They aim to determine the most effective way to measure glare, its impact on reading and whether tinted glasses or reading overlays can help. It’s hoped that a better understanding of the impact of glare will help parents, teachers, doctors and people with nystagmus to come up with the best solutions for reading in their education, work and day-to-day life.

A further small grant award to Leicester

Dr Mervyn Thomas, also of the University of Leicester, has won the Fight for Sight/Nystagmus Network funded small grant award for a nystagmus related research project. The work, delayed from 2020 due to the COVID pandemic, will now start later this month.

Vivien Jones, chairman of the Nystagmus Network’s Research Committee, said: “The Nystagmus Network is delighted that its joint funding relationship with Fight for Sight has led to two awards – first to Frank Proudlock for his winning bid for a PhD student post. We greatly look forward to seeing important research flow from this appointment, which will start later this year and represents the biggest-ever single investment by the Nystagmus Network in research. We are equally pleased to see that Mervyn Thomas has won the small grant award for his proposal to develop a low-cost system for the recording and analysis of eye movement characteristics, suitable for clinic-based assessments.”

Emma at her fundraising stall wearing a face mask.

Trustees publish their annual review

The Annual Report 2020 by trustees of the Nystagmus Network is now lodged with the Charity Commission and available to the public to read.

2020 was undoubtedly a most challenging year for the nystagmus community, the Nystagmus Network, people and services everywhere.

Despite the challenges of Covid-19, however, Chair of Trustees, Tim Cuddeford is pleased to report that 2020 was another positive year for the Nystagmus Network, thanks to the flexibility, innovation and resourcefulness of charity staff, volunteers, trustees and supporters. Thanks go, too, to National Lottery Players. Funding from the National Lottery Community Fund helped support the charity through some very difficult months.

The Nystagmus Network has been funding nystagmus research since the 1990s and continued to do so in 2020, with a new PhD post awarded, bringing another expert to the table, and another small grant award, both thanks to the charity’s funding partnership with Fight for Sight.

To find out how the charity adapted and developed to meet the changing needs of the nystagmus community during the pandemic, whilst continuing to fulfil its charitable objectives of support, awareness and research, you can read the full report by following the link below.

Read the Annual Report 2020 here

Read annual reports since 2015 here

Tim Pearce

Thank you, Tim

Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children.

Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky preview, but no spoilers, for his follow up book, due out later this summer. He is currently writing book three in the series.

When asked what spurred him to write, Tim said he has always loved being creative and has a passion for writing strong characters. He also loves a plot twist and tries to cram in as many as he can to keep his young readers on the edge of their seats.

The Nystagmus Network children’s story

Tim then led the children taking part in the online workshop to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.

Order Tim’s book on Amazon Smile here

Inspired by Tim?

Raindrops story writing and drawing competition for children

What do raindrops mean to you? What do they smell, sound, feel or taste like? What do they make you think of? How do they capture your imagination?

The Nystagmus Network Raindrops competition celebrates the wonderful creativity of children’s writing and illustration.

The best stories and drawings will be published in a special book which will be available to purchase from September 2021.

How to enter

The competition is open to all children with or without nystagmus, aged 5 to 14 years. There will be winners in each age category.

Download the competition rules and an entry form here

Completed entries (entry form plus story and / or drawing on Raindrops writing paper or drawing paper) should be emailed to [email protected] Deadline: 23:59 on Saturday 19 June

Prizes and a book

There will be some fabulous prizes for the winners of each age category, including books signed by your favourite children’s author. As many stories and drawings as possible will be published in a book which will be available for sale from September.

Get sponsored

If your little one is a reluctant writer, why not encourage them by asking friends and family to sponsor them 1p a word?

Download a Raindrops sponsor form here

The logos of Fight for Sight and the Nystagmus Network

Nystagmus research grant funding open for applications

The next round of small grant awards for nystagmus research is now open for application. The grant, funded jointly by Fight for Sight and the Nystagmus Network is worth up to £15,000.

The Fight for Sight / Nystagmus Network Small Grant Award One award to support clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.

Applications close on 5 August.

Find out more here

A woman undergoing a sight test.

Nystagmus news for eye care professionals

The Nystagmus Network now produces a digital newsletter for Dispensing Opticians and Optometrists. The first edition has just been published, bringing nystagmus news, stories and information directly to high street and community practices.

Read the newsletter and subscribe here

A child takes part in an online writing workshop with author, Helen Rutter. On his desk is Helen's book 'The Boy Who Made Everyone Laugh'.

Children’s writing workshops this summer

Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz!

Never mind. There are two more workshops still to come.

The first is with ‘Secret Agent Striker’ author, Tim Pearce and the second is with children’s writer and illustrator, Claire Alexander, author of ‘A Little Bit Different’.

Meet Tim Pearce

Children aged 7 years and up are invited to join a FREE interactive workshop with Tim Pearce, author of Secret Agent Striker. Tim will share his passion for writing, his inspiration and what he plans to write about next. You can send your questions for Tim in advance to [email protected]

Monday 10 May: 4:30 to 5:30pm

Book the Zoom workshop with Tim here

Order Tim’s book on amazon Smile here

Meet Claire Alexander

The Nystagmus Network welcomes children aged 7 years and up to a FREE interactive online workshop with Claire Alexander, author of A Little Bit Different and her new book A Little Bit of Courage. Claire will share her passion for writing and illustration her inspiration and what she plans to write about next. You can send your questions for Claire in advance to [email protected]

Thursday 17 June: 4:30 to 5:30pm

Book the Zoom workshop with Claire here

Order Claire’s books on Amazon Smile here and here

The logo of the Captain Tom 100 challenge for the Nystagmus Network featuring an image of a girl in a yeloow rain hat and cat, with a yellow umbrella doing the thumbs up.

Georgie’s Captain Tom 100 challenge

Twelve year old Georgie will be baking 100 cookies in honour of the memory of Captain Sir Tom Moore this weekend. That’s her #CaptainTom100 challenge to raise funds for the Nystagmus Network.

We’re so grateful for your support, Georgie. We know those cookies are going to be yummy!

Please sponsor Georgie here

Start your #CaptainTom100 here

Captain Tom 100 logo, with an image of Captain Sir Tom showing the thumbs up

Leon’s Captain Tom 100 challenge

To honour the memory of Captain Sir Tom Moore and his amazing fundraising legacy, Leon will be running 100 kilometers over the three day weekend to raise money for the Nystagmus Network research fund.

Thank you so much for your support, Leon and all the very best for your challenge.

Please sponsor Leon here

Start your #CaptainTom100 today