Category: Information and Support

Seeing Beyond The Eyes

The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support.

Eye care and Health Professionals armed with information to improve lives of patients with sight loss

A free resource pack for eye care and health professionals containing valuable information on sight loss support services, charities, equipment and referral pathways has been produced by Visualise Training and Consultancy  with the support of Thomas Pocklington Trust.

The pack complements the ‘Seeing Beyond the Eyes’ CET workshops  currently touring the UK which raise awareness of the difficulties faced by patients diagnosed with irreversible sight loss. It contains valuable information on local sight loss charities, Eye Care Liaison Officers (ECLO),Vision Rehabilitation Workers, low vision assessment services and Habilitation Workers. It also lists national organisations supporting people with sight loss and condition specific charities. Daniel Williams of Visualise said “It is vital patients with sight loss are referred immediately to sight loss services that can enable their independence and help them deal with a difficult time in their life. However Optical professionals can’t refer if they don’t know who they are referring hence why we have created such a resource pack and training roadshow.At the age of 8, I was diagnosed with Retinitis Pigmentosa, a gradual loss of sight, and had consultations with Dispensing Opticians, Optometrists and Ophthalmologists and at no point was I referred to any support services which is why I am so passionate about empowering eye care professionals with the awareness of what is available for people with sight loss to live independent lives”

Links to professional resources are also included such as the Government’s Access to Work grant scheme, an A – Z list of eye conditions and Thomas Pocklington Trust’s guide to designing a home for someone with sight loss.

Charles Segal, Dispensing Optician from D and H Hantman Optometrists said “It was one of the best CET courses, I have attended. “I had no idea that there was such a range of services, it made me fully aware of where we can send people and not just refer to the eye hospital. It was a highly informative meeting where the attendees actually met people who are dealing with or have dealt with people with sight loss,it was the first time I have actually met someone who has Retinitis Pigmentosa. It was moving and inspiring to hear how people with low vision get-on with their lives. The course has given me the confidence to help people who enter my practice and give them advice. The details of suppliers of low vision aids and daily living solutions are also invaluable for people facing sight loss during their transition to a different way of life”.

The pack can be downloaded free of charge by clicking here

For more information on Visualise Training and Consultancy visit their website

Visual impairment and mental health

Children aged between 8 and 11 years old who live with a visual impairment are three times more likely to develop a mental health problem than children with no visual impairment, according to new research.

The Nystagmus Network has been aware of this for a long time and always highlights the social and emotional aspects of nystagmus with parents and teachers.

Please click the link to read the full article in Optometry Today.

Resources for teachers and parents

The school summer holidays may have only just begun, but for teachers this is the time they think about preparing all those courses and lessons for the new school year.

The Nystagmus Network understands that teachers want to be particularly geared up to support children in their class with nystagmus. That’s why we’ve produced our Teachers Booklet, full of simple hints and tips to make sure that learning is accessible for visually impaired pupils.

Here’s what one teacher says about our booklet:

“I’m about to have a child in my class with nystagmus and have been given the booklet for teachers by his parents. I’ve found it extremely helpful and clear in my preparation for the year ahead. Thank you.”

Download your free document today!

A helping hand with taxes

Did you know that RNIB has a tax team that supports blind and partially sighted people with tax, tax credits and HMRC issues across the UK?

The team, based in Liverpool, is supported by HM Revenue and Customs (HMRC). Mark Rogerson from RNIB’s Tax Advice Service told us how the team makes a difference to the lives of blind and partially people.

We make tax and HMRC issues clearer

We help people to claim extra tax allowances, such as Blind Person’s Allowance and Marriage Allowance, which can reduce your tax bill and these can be transferred and backdated. Our tax service is free, confidential and available to people with sight loss, regardless of their age or income. We can arrange help with form-filling, completing your tax return, claiming a tax refund and resolving problems. We also advise customers about which products and building work are VAT-free, saving them more money.

Since the service started in 2011, we’ve helped over 34,000 people, identified £3 million in extra tax allowances and tax credits.

We make sure people feel supported

We have access to a dedicated team within HMRC for people who need extra help with their tax and tax credits. We help customers who are unable to speak to HMRC directly because of hearing loss, dementia or living in a care home. We also have a fact sheet in different formats with information on tax allowances and useful contacts.

We help customers to use HMRC’s online services

HMRC have introduced the Personal Tax Account, which allows you to manage your affairs with HMRC online, similar to an online bank account, but for tax. But if you can’t get online or the issue is more complex, we can help arrange for an adviser at HMRC to come to your home or meet you at a local venue. It’s about making sure blind and partially sighted people are supported in all their tax-related queries.

You can contact RNIB’s tax team by telephone on 0345 330 4897, emailing [email protected] or to find out more about the service visit rnib.org.uk/tax

The picture shows Mark Rogerson – RNIB Tax Advice Service

Celebrating National Sunglasses Day!

As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays.

We’re enjoying some beautiful, warm sunny weather across the whole of the UK right now, but for some the sun means discomfort and it can damage your sight.

Always remember to protect the eyes from bright light, inside and out, with UV protective sunglasses (make sure you check the label before buying), caps and sun hats, parasols, canopies and window blinds.

Nystagmus Network article published

To achieve our objective of raising greater awareness of nystagmus, the charity publishes articles from time to time on different aspects of the condition. The article we submitted for publication most recently is entitled Wobbly Eyes and explains nystagmus in language a young child can understand. The text is adapted from our free to download publication with the same title. Download your copy here.

People stand at a clinic reception holding Nystagmus Network balloons.

Nystagmus Awareness Day – for clinics

Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.

We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.

For those organising a fundraising event, we also have posters – and don’t forget your bunting!

If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

ECLO chatting with patient.

Do you know your ECLO?

If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s Sightline Directory.

The role of the ECLO is to support anyone affected by visual impairment or sight loss, from the point of diagnosis onwards. They can offer you information and support and signpost you to organisations, like the Nystagmus Network, who can help you. They can also help you come to terms with your condition and make sure you have someone to talk to.

So if you’re a VIP (visually impaired person), your ECLO is also a VIP (very important person) to get to know.

Find out more about ECLOs.