2 distance shields alongside 2 Nystagmus Network logos.

Please give me space

Now that lockdown measures are easing, lots of people, including those who are shielding for health reasons, are keen to ensure that social distancing guidelines continue to be followed.

Some blind and partially sighted people are concerned about difficulties with maintaining social distancing and are sometimes even resorting to not going out. If you have nystagmus it can be challenging to judge distances.

That’s why RNIB have worked with the Cabinet Office to develop a series of optional Please give me space badges you can print, wear or show on your phone. The idea is that people will immediately understand that you need space, but may find it difficult to maintain, so will help you by keeping their distance.

The logo of the 'please give me space' initiative - a yellow circle with a person in the centre, with two arrows pointing out to either side to indicate space and the words 'Be kind. Thank you for understanding.'

Find the badges on the government website here.

The Distance Aware initiative

Similarly, the new Distance Aware initiative is also welcome news. Using a series of distance ‘shields’, it enables individuals and organisations to politely prompt ongoing distancing and respect of individual social space. The scheme has recently been endorsed by the Department of Health and Social Care to promote the ongoing need for distancing. Also supported by the Welsh Government, the badge and poster templates are available to download here.

5 different distance aware shields. Each is a different colour with a chevronned border and in the centre a 2-way arrow indicating distance. Image includes logos of the Dept of Helath and Social Care, NHS Wales and the Welsh Government.

The Nystagmus Network hopes that the two schemes will help people living with nystagmus and low vision to stay safe, maintain their quality of life and continue to enjoy their independence.

A postcard to advertise virtual Open Day on 3 October, showing a selection of images of the highlights to come.

Want to meet up?

You’re warmly invited to join us for one or more of our upcoming forums in the run up to Open Day 2020.

Because we know that one of the ‘best bits’ of Open Day is meeting up with others, we’re holding a series of online forums to help you do just that.

In August and September, we’ll be hosting some great opportunities for you to network and chat with other people living with nystagmus or other parents.

Parents’ Forum
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to network, chat and ask all your burning questions.

Thursday 13 August at 7.30pm
Parents sign up here
Adults’ Forum
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other adults living with nystagmus.

Thursday 27 August at 6pm
Adults sign up here
Acquired Nystagmus Group  – meet the expert
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to hear an expert speak about acquired nystagmus and ask questions.

Date and Time to be confirmed
Acquired Nystagmus sign up here
B4 logo

Discrimination against B4 athletes within International Blind Sport

Charities supporting people living with vision impairments, including the Nystagmus Network and the Albinism Fellowship UK, have signed an open letter from B4 International Blind Sports, outlining concerns about discrimination towards athletes classified B4 in international blind sports.  The letter is addressed to the IBSA (International Blind Sports Association) and the IPC (International Paralympic Committee).

Classification currently sees many athletes and sports men, women and young people with nystagmus classified as B4. This means that, whilst their sight is sufficiently impaired to prevent them competing fairly alongside fully sighted people, within the current regulations, they are unable to represent their country in any sport at international level.

We would argue that the B4 classification does not fully recognise the variability of vision or the impact of glare on people with nystagmus and ocular albinism. For this reason the letter includes the following:

“A frustration further compounded by the fact that visually impaired athletes have varying levels of functional vision, and the difference from B3 to B4 is, minimal in some conditions, and could easily be affected by external factors, such as tiredness, light and interpretation of visual cues.” 

B4 International Blind Sports have also set up a petition for anyone to sign who wishes to have blind sports classification re-examined.

Please sign the petition here 

A thank you card from the Nystagmus Network showing an image of 2 boys taking part in a team building exercise.

BBC charity appeal raises £8,000

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.

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!

Children reading The Gruffalo.

The impact of COVID-19 on visually impaired children

A guest post from Rosaleen Dempsey, RNIB

Hi there

I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and is U.K. wide.

Parents’ survey closing this Friday – 15 May

This is the final week to to tell our governments/assemblies across the U.K. about the impact the COVID19 crisis and lockdown is having on the learning & development of your children and young people with VI. Please take a few minutes to fill it in if you can.

Take the survey here

Many thanks,
Rosaleen Dempsey,
RNIB

Let’s go for an eye test!

Our next webinar is all about going to a high street optician’s when you have nystagmus.

Tuesday 12 May at 3pm

You have had an eye test … what now ? 

An interactive webinar for the nystagmus community.

Jayshree Vasani (Dispensing Optician) and Sarah Arnold (Optometrist) want to dispel the myths around what happens after the hospital appointment.

What happens when you are discharged from the hospital eye service in to community practice? 

Why is it vital that you have regular eye checks?

How do I get the very best vision for my child?

What is a Dispensing Optician and Optometrist?

How can professionals in  eye care work together to benefit me or my child? 

These are questions we want to discuss and answer!

So join us for this webinar!  

We are excited to be meeting you all online and are looking  forward to the question and answer session!

See you there!

Jayshree and Sarah

CLICK OR TAP HERE to book your place

5 images of amazing people.

How amazing are you?

In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed.

In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus.

Let’s make 2020 even more amazing!

Email your amazing nystagmus stories, plus photo, please, to [email protected].

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 Aware logo

Does nystagmus or ocular albinism affect my immunity?

Lots of you are asking us this question and some of you have received notification letters from the government.

We asked for expert clinical advice and received the following statement:

“IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity.

“There are some syndromic forms of albinism that are associated with immunocompromise and these patients would already be aware of this and/or have been notified by the UK government that they are in the vulnerable group.”

Whether or not you have nystagmus, please remember to follow scrupulous hygiene practices, including thorough hand washing, whenever inserting, removing or cleaning your contact lenses as we understand that the coronavirus can enter the body through the eyes.

If you wear glasses or sunglasses, please wash these regularly using non abrasive soap – we find washing up liquid does the trick.

If you are registered sight impaired (SI) or severely sight impaired (SSI) you can ask to use priority shopping times and online supermarket delivery slots.

Keep asking us you questions. We will find the answers for you.

Say safe and well