Nystagmus Network founder awarded MBE

Vivien Jones, founder, honorary president and trustee of the organisation which supports people with nystagmus, was named in the New Year’s Honours list.

The honour follows a milestone 40-year anniversary recognised by the charity in 2024.

OT heard from Jones on learning she would receive an MBE, the history of the charity, and what comes next.

Could you describe the moment you learned you would be receiving an MBE?

I picked up the letter from the doormat and wondered out loud who on Earth was writing to me from the Cabinet Office? When I opened the letter, I was shocked – in a pleasant way – to find it was the offer of an MBE. I was thrilled.

What does it mean to you to receive an MBE for services to the nystagmus community?

I see the award as a tribute to the many people who have contributed to the growth and development of the charity over the last 40 years. They – and they know who they are – have reached thousands of people who have nystagmus and their families and friends.

I see the award as a tribute to the many people who have contributed to the growth and development of the charity over the last 40 years

The Nystagmus Network recognised its 40-year anniversary in 2024. How was the charity established and how has it evolved since?

I founded what was then a self-help group back in 1984 after our baby son was diagnosed with nystagmus. After his diagnosis, we fell into a kind of black hole where we couldn’t find out information, or the information we did find was inaccurate.

We went to the London Refraction Hospital, now the Institute of Optometry, because we discovered they were conducting research into nystagmus.

On one of my visits, I feel into conversation with the late Ron Mallett about self-help groups, and he offered to help by sending me the names of patients he thought would be interested. Something that I don’t think would happen now in the days of GDPR. I wrote to the patients and had a very positive response. This led to a meeting and the formation of the group.

It has evolved massively since those early days. From a group of well-meaning amateurs, it has become a professional organisation offering advice and support to those with nystagmus, their families and friends.

The charity’s information resources have vastly improved and diversified. We now offer leaflets that cover both congenital nystagmus and acquired nystagmus, plus specific leaflets, information hubs and videos on topics such as driving, benefits, education, diagnosis, and treatment. We continue to offer a helpline which is well-used.

What are some of the biggest milestones in the history of the Nystagmus Network?

We became a registered charity in 1990 and made our first research investment in the same year. In 1997 we recruited our first member of staff.

We held a face-to-face international nystagmus research conference in Abingdon in 2009, and our research funding partnership with Fight for Sight began in 2015.

We held our first awareness day Wobbly Wednesday in 2015. This became Nystagmus Awareness Day and moved to a new, permanent date (20 June) in 2018. 

In 2020, our first Radio 4 charity appeal was presented by Richard Osman, and a second appeal was presented last year by Gerard McDermott.

We hosted the international nystagmus symposium online in 2022, 2023 and 2024.

We became an official member and patient representative body of the UK nystagmus research organisation, NUKE, in 2022, and the Nystagmus Care Pathway was adopted by the Royal College of Ophthalmologists in 2023.

What is the most pressing issue affecting people with nystagmus today?

Special educational needs and disabilities (SEND) support for children with nystagmus is the top priority for parents. We will be submitting evidence to the Education Select Committee on the current SEND crisis.

Employment is a hot topic among adults, particularly around being accommodated in the workplace and whether people are supported to stay in work following an acquired nystagmus diagnosis.

We contributed evidence on behalf of the nystagmus community to the 2024 All Party Parliamentary Group in Visual Impairment and Eye Health report on employer attitudes to the visually impaired: Changing Attitudes, Changing Lives.

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What further changes would you like to see prioritised?

I would like to see greater awareness among the general population, employers and education professionals to drive up quality of life for people living with the condition.

I’d like the charity to grow and increase its reach and engagement with the 2.4 in 1000 people living in the UK with congenital nystagmus or acquired nystagmus.

Of course, I would like to see effective therapeutic solutions to prevent and ultimately cure nystagmus.

What would be a personal highlight from your work with Nystagmus Network?

Seeing those with nystagmus come together at our regular meetings when they meet others with the condition, often for the first time. It’s very moving to watch people realise they are not alone.

It’s very moving to watch people realise they are not alone

What is next for Nystagmus Network?

I’m excited about this year, when we have four meetings planned in different parts of the country. The first is in Maidstone on 15 March. Subsequently, we are going to meet in Birmingham, Bristol, and Leeds.

We bring together experts to help and advise those with nystagmus or their parents, as well as allowing plenty of time for people to get to know one another. They are great days.

If you could share one message with our optometrist readers, what would you want to say?

The charity has been delivering continuing professional development since 2020, seeking to train High Street optical staff, one practice or group at a time, in adaptations for the nystagmus patient.

Accommodating adults and children with nystagmus in practice is relatively straightforward. The chief element is time. There is then no reason why testing and dispensing glasses or contact lenses for people with nystagmus should not be successful and rewarding for both the patient and the optometrist.