DVLA logo

DVLA consultation opens on fitness to drive

The Driver and Vehicle Licensing Agency (DVLA) is responsible for establishing whether a driving licence holder or applicant can meet the appropriate medical standards of fitness to drive. Medical enquiries can range from the consideration of information provided by the driver or applicant to a more detailed investigation which can include information provided by medical professionals, reports or examinations. Consideration of medical cases is necessarily thorough so that the right balance between road safety and the needs of a driver to maintain mobility is maintained.

As the volume and complexity of driving licence applications or renewals continues to increase for applicants who have one or more medical conditions, the government believes that the time is right to review the existing legal framework.

In order for DVLA to take this forward, today Monday 31 July, they have published a call for evidence on driver licensing for people with medical conditions, which can be found here:

The call for evidence sets how and why licensing decisions can be so complex for individuals with medical conditions, the roles of those involved in the process and presents the challenges that demographic and other changes poses to the current process.  It explores how other countries deal with drivers with medical conditions and other situations where medical fitness is assessed. The call for evidence also considers the potential impact that technological advances may have on the future of driving and the way DVLA assesses medical fitness to drive.

The call for evidence runs until Sunday 22 October 2023. Evidence will be gathered from experts across organisations.  Responses to the call for evidence will be analysed to assist with reviewing the existing legislative framework.

You can contribute the the Nystagmus Network’s response to the call for evidence by emailing us at [email protected]

Download a copy of the Nystagmus Network’s digital guide to Nystagmus and Driving here

A flyer promoting PayPal Giving Fund's 'Help a small charity make a big impact' campaign.


You can make a difference to the Nystagmus Network by simply selecting us as your favourite charity on Give at Checkout via PayPal. We could win up to £20,000 in match funded donations.

Please visit, search for the Nystagmus Network and select us as your favourite.

#OneTapBigImpact2023 see website for full Ts and Cs.

One Tap Big Impact – select us as your favourite here

Thank you for your support!

The logo of the University of Plymouth.

Research participation opportunity in Plymouth

Perceptual Learning for Nystagmus

We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.

Who are we looking for?

Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus

What will you be doing?

  • Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
  • Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks

Who are we?

Dr Mahesh Joshi

Dr Mahesh Joshi

Dr Asma Zahidi

Dr Asma Zahidi

For more information, please contact: [email protected] or [email protected]

Travel Expenses

We will be paying your travel expenses to Plymouth up to £50.

Fight for Sight and Nystagmus Network logo.

Call for research grant applicants

The Nystagmus Network is delighted to announce that we are again partnering with Fight for Sight this year to offer the Small Grant Award Scheme. The grants are available for clinical research addressing visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing/analysis or treatments.

We are delighted to inform you that the scheme is now open for applications, with the deadline of 13:00 on Wednesday 13 September 2023.

This year we particularly welcome applications from Early Career Researchers.

  • Small Grant Awards are intended to support early career research, which should be used to collect preliminary/pilot data to make research ideas more competitive when developing larger follow-on funding applications. These awards offer competitive funding of up to £15,000 to clinical or research scientists to conduct stand-alone research projects for up to 12 months.
  • Please visit the Fight for Sight website for more details, including in depth guidance, and to access the online grant management system.
  • For any queries during the process, please email [email protected].

You can contact us if you require any additional information, and we look forward to working with you through the process.

Mason is sitting on the floor of a sports hall holding a water bottle.

Mason’s nystagmus story

For Nystagmus Awareness Day 2023 we invited members of the nystagmus community to share their story to help people in the wider population to understand the condition.

Thank you to everyone who shared their story with us.

You can read all our nystagmus stories here

This is Mason’s story …

We first noticed Mason’s eye movement when he was around 8-10 weeks old. His eyes would jerk to the right. My elder brother also has quite severe nystagmus so instantly my gut instinct told me it was nystagmus, however I just never considered that my children would have it as I don’t have it myself, although my mum has very mild nystagmus. As Mason was born at 35 weeks and had some trauma surrounding his brain, we already had an extra eye and hearing test booked in. This meant we were fast tracked for an appointment which we were extremely grateful for! The Ophthalmologist clinically confirmed it – congenital jerk nystagmus. 

The first year of his life left us in constant worry about how he’d struggle to meet milestones. Would he be a late walker? Would he be able to drive when he’s older? However, as time has gone by, he’s really shown us just how determined he is to not let his eyes stop him from doing everything he wants. He began to walk around 15 months and now at the age of 2 he doesn’t stop running! His confidence can sometimes be a bit knocked down when exploring new, big places with a lot to take in, but generally he is fine once shown around and how to access what’s around him. 

We see a Visually Impaired teacher on a regular basis who will support him in nursery and school. She is just amazed at how able he is. His eyesight is incredible and he often spots things before I do! He does have a very mild prescription for glasses, but being the crazy active toddler he is, he won’t wear them and is more than happy to go without at his own choice. 

He loves kicking a ball about, loves playing with his cars, loves being outdoors and loves spending time with family. 

Personally, I don’t know what life with nystagmus is like, but I do know that with the right mindset and determination it can’t stop you from doing what you love. Everyday my little boy makes me so incredibly proud; his achievements motivate me to be the best I can too. 

Gemma smiles for the camera. She has long, very fair hair and wears a dark top and necklace.

Gemma’s nystagmus story

To help raise awareness and understanding of nystagmus, we;re sharing all your stories this Nystagmus Awareness Day.

You can share your story here

This is Gemma’s story …

My name is Gemma and I am 38 years old. I have congenital nystagmus. I have 3 children whose vision is perfect so I know I haven’t passed it down to them. 

When I was younger nystagmus wasn’t well known and I spent a lot of my childhood visiting the opticians, going to the eye hospital and being given glasses for short sightedness which made no difference. I held everything close up to see and managed school by copying off the child next to me. My hair was white and I have a very pale complexion so I think doctors thought my vision was likely to be down to albinism. I was told as my hair got darker as I got older my eyes would get better … it did not. 

After starting secondary school I had to ask the teacher to read off the board what they were writing so a lot of my school work was done by memorising what they said. Every subject I took further were all practical subjects so art, drama, dance. I went to university and completed a theatre and performance degree. 

I always knew I wouldn’t be able to drive so it’s never really bothered me. I’ve always got by one way or another. 

At the age of 17 I was diagnosed with nystagmus and was classed as partially sighted. At the age of 30 I was then classed as severely sight impaired/blind.

I worked in schools as a learning mentor and a teaching assistant and went on to complete my PGCE to teach. Teaching wasn’t for me and I went on to secure a job as Quality of Education Manager and SENDCo for a large day nursery. I absolutely love my job.

I have always had barrels of confidence and take pride in how much I have achieved despite my visual impairment. There’s a solution to every problem. 

Claudia wears a white top, glasses and a floral crown.

Claudia’s nystagmus story

Thank you to everyone sharing their stories with us for Nystagmus Awareness Day 2023.

You can share your story here

This is Claudia’s story …

Ours isn’t a complete journey, far from it. In fact, it’s just the beginning. Claudia is 6.

Claudia was diagnosed at 9 months old.

I’d noticed the flicker in her eyes.

Is this developmental? I’m not sure I remember her brother having the same issue, but it was a long time ago (4 1/2 years between them). Will it pass? She’s a happy, healthy baby …

The (very concerned) GP, who’d never seen anything like it, referred us to the non-emergency, urgent clinic at our local hospital.

Cue tests, more tests, fasting, sedation and MRI scans. A very long few days of constant worry.

Diagnosis: congenital nystagmus.

Prognosis: a non-degenerative condition. Unlikely to drive a car or catch a ball.

I don’t diminish their pragmatism. These outcomes are likely (most definite) in Claudia’s case. However, her vision is her only boundary. Apart from not being able to see very well, Claudia is wilful, stubborn, contrary, assertive, wise, articulate, bright, funny, sassy, endearing and beautiful – no different to any other child her age.

She has taught me to be patient, tolerant (not always easy when you’re being back chatted and outsmarted by a 6 year old!), inclusive and mindful of others. And has opened up an entire new way to see the world and its endless possibilities.

In time, we have also learned that Claudia is severely colour blind (she sees black, white and red for sure, the other colours kind of merge together – but she can determine between lighter and darker shades) and photophobic (she wears react-to-light glasses and an array of peaked caps and visors throughout the year).

There may be other issues that arise in the future, but we are closely monitored and very well looked after by the brilliant team at Royal Derby Hospital. We await genetic testing, too.

The remainder of Claudia’s senses, however, are on high alert. Her (somewhat selective!) hearing is refined. She hears music through her whole being. She dances like everyone is watching. Her grasp of language is beautiful and her interpretation of the world leaves me stunned and floored, regularly.

This girl endears anyone and everyone to her that crosses her path. And I know, she will move mountains.

Go get ‘em, girl. The world is yours.

Ella wears a pink dress and stands with someone wearing a large character costume.

Ella’s nystagmus story

We are delighted to share your stories of living with nystagmus to help raise awareness.

You can share your story here

This is Ella’s story …

Ella was first diagnosed with nystagmus at 3 months old. A routine check-up at the doctor’s turned into something completely different. The doctor told us she had nystagmus (this is caused by Oculocutaneous Albinism) but didn’t elaborate any further other than to say she would be referred to the eye hospital and she might not be able to see very well. As new parents this was frightening and very upsetting. We did have lots of support from the hospital and the Nystagmus Network who have been amazing. The helpline has made all the difference. Talking to someone who understands our feelings and just to listen to us.

Ella is now 4 years old and will be starting school in September. She is amazing beyond words. She participated last year in a dance show in front of a large audience, takes dance and swimming classes regularly, loves going on her scooter everywhere and she does not let anything hold her back. Her 8-month-old sister was also diagnosed recently and Ella said to us: “Well me and Lola will be able to talk to each other about it and support each other”.

Very proud parents. 

Robyn stands in a garden, wearing a Nystagmus Network T-shirt.

Robyn’s nystagmus story

All this week we’ve been sharing your nystagmus stories to help raise awareness of nystagmus for Nystagmus Awareness Day 2023.

You can share your story here

Robyn was first observed to have wobbly eyes at the age of 5. With no family history of nystagmus, it quickly became concerning as to what was the cause. Robyn was seen by Ophthalmology who referred her on for what felt like every test going. CT head, X-rays, blood tests, ultrasound scan, referral to Neurology, Electro-Retinographic studies. Which she took all in her stride. My worry went from the possibility of nystagmus to the chance her wobbly eyes could be caused by something much worse. Thankfully, 18 months later, all tests clear, she was given a diagnosis of Congenital Idiopathic Nystagmus. It was at this point I discovered the Nystagmus Network.

Robyn, now age 7, will say there’s nothing wrong with her eyes, they’re just a bit wobbly. As a parent you worry about the now, and you worry about the future. However, Robyn’s love for life and pure determination have shown me I don’t have to be so worried. The hurdles she comes across she takes in her stride and discovers solutions for her to manage them in her own way. While she may not be able to hit certain expected milestones such as learning to drive and riding a bike is something we still haven’t quite mastered, despite the many tries (!) we’re able to celebrate other aspects of life and achievements#, from running races on sports day to threading beads onto string and an upcoming ballet exam she is determined she will get top marks in. I have been so incredibly grateful to the Nystagmus Network for all the information they have and support they offer. We will both continue to learn and adapt to future challenges, but I shall take heed from Robyn’s determination and resilience in how we face them.

Isabelle smiles for the camera.

Isabelle’s story

If you’d like to share your nystagmus story to help raise awareness we would love to hear from you.

Share your story here

This is Isabelle’s story …

I was diagnosed with congenital nystagmus as a baby. My mum didn’t know anyone with the condition and had never heard of it, as most people haven’t. We didn’t learn that I have ocular albinism, that causes my nystagmus, until I was around 14. We discovered this through doing some tests in a hospital in London.
I wore glasses from 6 months old until I was 13, but came to the conclusion that glasses didn’t help at all.

Having nystagmus has impacted my school life significantly, but never stopped me from achieving my goals. Going to mainstream school, as most children do with nystagmus, it can be difficult navigating being “different” from other children, especially when those differences are noticeable. However, I found just being confident and proud of my visual impairment helps so much. I am now at university, which some days I didn’t think would be possible, but if you can believe it you can achieve it!

One of the biggest impacts nystagmus has had on my life so far is not being able to drive. I’m only 19, but when I turned 17 it was hard watching all my friends pass their driving tests and start driving. I felt like the only person that wasn’t allowed to drive. Over time, I realised that being the passenger has so many perks and I’m definitely not alone.

Throughout my life with nystagmus, I’ve had many people of all ages make comments or ask questions. When I was younger I would get upset when another child said something that maybe wasn’t worded very nicely. I’ve come to realise that it’s just a lack of knowledge, as nystagmus isn’t a well-known condition throughout society. It can be awkward, upsetting and triggering when someone points it out or makes a disrespectful comment, but simply describing my disability to them is always the best way to help someone understand.

Having nystagmus was my biggest insecurity through my childhood. It was quite noticeable, especially through the way I have to tilt my head to look at people. People not knowing what it is can be a struggle, as I can do things differently from others to make it easier for me with my impairment. However, I’ve grown to love it and be proud of the way I navigate life alongside it.

Being visually impaired has impacted me in even the smallest of ways that we had never thought of when I was younger. Things like going to concerts and not being able to see the performer, being unable to read the whiteboards in school, getting lost in busy places, not waving back to people on the street as I didn’t see them, the list is endless. However, I’m grateful for the things I can see and the lessons it has taught me; everything will be okay in the end. Just because I have nystagmus, doesn’t mean I can’t achieve my goals.

It has caused many obstacles and I’m sure it will cause many more, but I know that I’ll get through them with the support of my family, friends and charities such as Nystagmus Network. My eyes are beautiful and so are yours!