Two knitted nystagmus mascots wearing silver grey and purple clothes to mark the Platinum Jubilee, stand in a garden.

Join us for the big lunch

As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch.

Let’s all get together!

Whether you’re lunching at home in the garden, in your street or a local park, whether it’s a barbecue, a sharing platter or cucumber sandwiches and Jemma’s lovely Platinum Pudding, please share your photos with us and join the rest of the nystagmus community for lunch.

We’ll share your photos on our Facebook page to show that we all belong to the nystagmus community.

Find out more about the Platinum Jubilee here

Mascots available to order here

Gemma wearing the CROM and a clinical face mask.

Nystagmus Network funds research equipment

At the end of 2021 the Nystagmus Network invited funding applications from UK nystagmus researchers to cover the cost of equipment needed to take their work forward. This week work has begun at the University of Sheffield and Sheffield Hospital using newly funded equipment.

Orthoptist, Gemma Arblaster, from the University of Sheffield applied for a grant to purchase two different head position measuring devices. Her aim was to find a simple, accurate and clinically acceptable method of measuring head position and abnormal head postures in patients with nystagmus.

The Nystagmus Network was delighted to be able to fund the equipment, costing £549.25, thanks to the generosity of our supporters and fundraisers.

In patients with nystagmus head position is an important measurement, particularly during different tasks and different levels of visual demand. Currently in clinical practice Orthoptist or Ophthalmologist descriptions of head position and abnormal head postures are relied on. This method could be improved, and head position could be recorded and measured more accurately. 

The team at the University of Sheffield have been exploring methods of head position measurement, with an attempt to find a robust, but simple method of accurately measuring head position and head postures. Ideally this measurement would be simple to perform and non-invasive, but finding an accurate and remote method of measuring head position, suitable for clinical practice, has proved difficult. The gold standard Polhemus device was accurate, but impractical to use in a clinical setting. The depth camera (microsoft Kinect camera) was easier to use, but the data was less accurate than the Polhemus, particularly when less of the face was visible to the camera. The Kinect camera has also been commercially discontinued.

Gemma’s application was for two ‘low tech’ devices to measure head position to further both clinical and research interests in measuring head position and abnormal head postures in nystagmus. The cervical range of motion (CROM) is positioned on the head, but is considered accurate and fairly simple to use. The goniometer is an even simpler device that is placed near the head and does not need to be worn, however it can only measure in one plane at a time. Both devices offer potential to be used accurately to measure head position and abnormal head postures in patients with nystagmus, but further evidence is needed to explore their usability and support their accuracy.

Firstly, the devices will be used in the Orthoptic clinic at STH NHS FT to explore their ease of use and limitations in patients with nystagmus and abnormal head postures. Secondly, ethical approval will be gained for a research study comparing clinician descriptions of head position and abnormal head postures (current clinical practice) with measurements using the CROM and the goniometer in patients with nystagmus and abnormal head postures for other clinical reasons. The aim is to find out which method of measuring head position and abnormal head postures is the most simple and accurate in patients with nystagmus. This research will be published and the results disseminated. The plan is to apply for further funding to support research investigating and measuring head position and abnormal head posture measurement in nystagmus. This is particularly important for measuring the outcomes of interventions for nystagmus that are specifically targeted at improving head posture (such as surgery) and improving vision (such as medications).

Gemma currently has a clinical contract with STH NHS FT and a lecturer position at the University of Sheffield. This gives her a unique opportunity to undertake research in clinical populations and in student populations. The CROM and goniometer devices will be kept in the Orthoptic Department at STH NHS FT and used in patients with nystagmus for clinical and research purposes. Both devices will also be available to the University of Sheffield for undergraduate teaching and undergraduate research projects, which can only recruit participants from the volunteer student population.

This week, Gemma has begun work with the Nystagmus Network funded devices. She said:

“Thank you Nystagmus Network for funding our new head posture measuring equipment. I’m excited to start using it in the orthoptics clinic at Sheffield Hospital.”

A doctor wearing scrubs is writing on a clipboard. She is smiling at the camera.

Nystagmus affects quality of life of children and their parents, confirms new research

A team at the Eye Hospital and School of Ophthalmology and Optometry at Wenzhou Medical University in China have recently published their research on the effects of childhood cataract surgery in young children. The results show that the impact of nystagmus, strabismus and amblyopia, resulting from the cataracts, not from the surgery, have a significant impact on the quality of life of both the child and their parents, when compared to families where the child has full vision. This will come as no surprise to families living with a child who has nystagmus.

The quality of life is affected most for the child because of the impact of these eye conditions on the functional vision, meaning that they are more likely to be limited in the activities they can take part in at school and elsewhere. For parents, the most significant impact on the quality of their life is the constant worry about their child’s eyesight.

It is thought that the best solution would be to bring cataract surgery forward in these children, before the nystagmus, strabismus or amblyopia has time to develop.

Read the full article online here

A group of people wearing white coats sit in rows behind laptops with a lecturer pointing at a screen.

Eye health experts seek to refresh eye research priorities

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly.

Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy  earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh. 

Professor Rupert Bourne, NIHR National Specialty Lead for Ophthalmology said:

“It’s almost 10 years since the UK last published its eye research priorities and progress has been made in learning more about each of those 12 key areas that were set at the time. This survey is designed to help us assess whether these are still the right priorities for us to be focusing our attention on, and to delve deeper into some of those, or whether there are new areas of eye research that we now need to make a priority.

We are encouraging all those with an interest in eye health and research to take part in the survey to help shape the direction of future eye research.”  

The survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in. The survey feedback will inform the final Top 10 updated priorities across different eye subspecialties. 

Please click here to take part in the survey. 

The survey will close on 9 August 2022. 

Take part in the survey here

Two people at a table. We can see only their hands. On the table is a handheld device a cup of coffee and a glass of water.

BlindAmbition takes over the Working Age Forum

BlindAmbition is pleased to announce that it will be taking over the running of the Working Age Forum (WAF) for Visually Impaired People endorsed by the RNIB. The forum is a relaxed, sociable space for visually impaired people to meet, learn and inspire each other to achieve their best lives. The forum has been run for many years by London Vision but recent strategic changes have required a new home. Blind Ambition is extremely grateful to London Vision for its dedication in running this valuable support network and is honoured by the opportunity to continue this work and broaden it to cover the entire UK.

BlindAmbition has been working with the RNIB, Shaw Trust and other leading disability empowerment organisations over the last two years to help blind and partially sighted people get into work with a series of employment webinars aimed at every aspect of the employment journey, from CV writing, to interview techniques and harnessing government support available. Alongside this they offer one2one coaching to help people with their employment journey. Each month there will also be a 5 minute slot in which they put the limelight on a “VIP of the month” to share their story and success as well as tips on technologies and other topics of interest for the forum. The WAF builds on this existing partnership to further help support blind and partially sighted people. It will continue every second Wednesday each month from 6-7pm on zoom while they consult with members on how best to develop the concept. They will be looking to develop the WAF further to enhance skills with rebuilding, revitalising, reskilling, redirecting and recruitment in the employment journey.

Seema Flower the MD of BlindAmbition who is also registered blind said:

“At BlindAmbition we’re extremely excited to be helping blind and partially sighted people to find work and the rewards that come from it. We mustn’t forget that we’re helping people. Everyone has dreams and ambitions which is why it’s so exciting when participants share their success stories and you see how much impact a little care and support can have in people’s lives.”

BlindAmbition helping blind and partially sighted people achieve their dreams.

To join the first session of the series, please register using this link.

Thje logo of City Yniversity of London and the words 125 years.

Care givers survey

Participants needed for research into the effects of the pandemic on those caring for and supporting people living with a visual impairment

The Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London are looking for volunteers, aged 18 or over, who provide care and support to an individual living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.

As a study participant, you are invited to complete a questionnaire about your experiences and views about how the pandemic affected you as a caregiver for an individual living with a visual impairment. The questionnaire is written, and the responses are required, in English. The questionnaire in available on line here.

If you prefer, Word document attachments of the questionnaire can be e-mailed to you or a paper version is available.

Questionnaires would be expected to take 10 – 15 minutes to complete.

In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.

For more information about this study, or to volunteer to take part, 
please contact: Liz Frost at [email protected]

This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2022-0840).

Jay Self

Does albinism protect against AMD?

We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If you or anyone you know fits the bill, please read on …

Jay and Helena are seeking to understand two questions which have baffled researchers for some time and they need your help:

1.       Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?

2.       Why does the retina lose function late in older animals with Albinism, but apparently not in humans?

If anyone with Albinism, who is over the age of 60, would like to help Jay and Helena find answers to these important questions, please complete the form below. Please note that by completing the form you are giving us your permission to pass on your details on to the relevant research team.

Thank you.

The front cover of the BNystagmus Network guide to nystagmus and benefits.

A new guide to nystagmus and benefits

From our monthly virtual support networks to our free benefits advice, the Nystagmus Network is always here for you.

As we emerge from the pandemic, we’re all feeling the financial pressure of increasing fuel prices, the rise in the cost of living and, for some, job insecurity. So, we’ve put together a new guide to benefits.

Alongside our bespoke booklet on DLA, PIP and Nystagmus by volunteer Mike Hughes, a professional benefits adviser and member of the Greater Manchester Welfare Rights Advisers Group (GMWRAG), we now offer a Benefits Guide, providing information on a wider range of means-tested and non-means-tested benefits which may be available to someone living with nystagmus. The new guide was compiled by our staff team, under Mike’s professional guidance.

Download the new benefits guide here

The front cover of the Nystagmus Network annual report 2021.

We publish our Annual Report 2021

With two years of global pandemic behind us, the Nystagmus Network is still here, supporting the nystagmus community, thanks to the dedication of our valued supporters, fundraisers and members.

Thanks to you, in 2021 we
 

·       supported almost 600 people with enquiries, helping them to make sense of nystagmus

·        engaged with and provided information to over 13,000 people on social media

·        invested a further £17,320 in nystagmus research

Read the Annual Report 2021 here

Children in a classroom with their hands up to answer the teacher's question.

Reform for children and young people with SEND

As part of a SEND reform, which the UK government describes as ‘ambitious’, a green paper has been published as part of a consultation on a stronger national system for children with special educational needs and disabilities (SEND), boosting parent confidence.

Better support for children and young people with special educational needs and disabilities (SEND) is at the heart of a new national plan to level up opportunities, with a key focus on ending the postcode lottery that leaves too many with worse outcomes than their peers.

The Government’s SEND and alternative provision green paper, published on 29 March, sets out its vision for a single, national SEND and alternative provision (AP) system that will introduce new standards in the quality of support given to children across education, health and care.

The ambitious green paper is the result of the SEND Review, commissioned to improve an inconsistent, process-heavy and increasingly adversarial system that too often leaves parents facing difficulties and delays accessing the right support for their child.

The plans to reform the system will be open for a 13-week public consultation, giving families frustrated by the existing, complicated and bureaucratic system of support the opportunity to shape how a new system will work in the future – and give them confidence that their local school will meet their children’s needs so they can achieve their full potential.

More details on the gov.uk website here