The effect of attachment style on quality of life in visually impaired individuals

City University would like to invite you to take part in a research study. Before you decide whether you would like to take part it is important that you understand why the research  is being done and what it would involve for you. Please take time to read the following information carefully and discuss it with others if you wish.

What is the purpose of the study?

Many individuals with visual impairment report a reduced quality of life. This is thought to be due to their reduced visual functions, although other factors could also be involved such as the effect of other conditions and general health. Personality type and patterns of interpersonal relationships (attachment style) may also need to be taken into account. The purpose of the study is to investigate the relationship between adult attachment style, personality type and response to visual function quality of life questionnaires in patients that are visually impaired. We anticipate the study will take around 12 months to complete.

Why have I been invited?

City University would like to invite 44 volunteers aged 18 and over to take part in the study. To take part you must be registered as visually impaired (or have a level of vision consistent with registration), and a known diagnosis. If you are  unsure whether you qualify for participation please contact the research centre.

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part you will be asked to sign a consent form. If you decide to take part you are still free to withdraw at any time and without giving a reason.

What will happen if I take part?

If you decide to take part, an appointment will be arranged for you. The researcher may contact you by email, text or telephone to remind you of your appointments.

You will attend for one visit with the researcher. This will take place at City Sight (City University London, Tait Building, London). The visit is expected to last approximately 2 hours. At the start of the appointment you will sign a consent form agreeing to take part in the study. You will then be asked some questions about the health of your eyes. During the visit you will have some standard vision tests, such as checking your vision using a letter chart. You will also be given a questionnaire (this can be done verbally) to complete.

Expenses and Payments (if applicable)

A reward of £25 will be given to all participants. This will  be issued as a Marks and Spencer gift voucher.

What are the possible risks of taking part?

There are no risks involved by taking part in this study.

What are the possible benefits of taking part?

Whilst the knowledge gained from this study may be of no immediate benefit to you; the results will provide a better understanding of the relationship between adult attachment style, personality type and response to visual function quality of life questionnaires in patients that are visually impaired. This may ultimately lead to the design of more tailor made rehabilitation services for visually impaired individuals.’

What will happen when the research study stops?

All collected data will be kept securely in accordance with the University and Data Protection Act guidelines.  Disposal of data after the obligatory retention period will  be done in a secure manner according to the University policy.

Will my taking part in the study be kept confidential?

Your identity will be recorded against the findings but will not be stored on any computer. This information will be kept in a locked filing cabinet in the Optometry and Visual Science Division,  City            University              London.    Only    the investigators will have access to this information. Your identity is needed in case we wish to contact you at a later date. All data will be anonymised. The results obtained will be analysed and probably published but your identity will never be unveiled.


What will happen to results of the research study?

You will be given an oral summary of any significant results. Please note that although these procedures may give you useful information about your vision, they are not a full eye test that can be used for diagnostic purposes, and are no substitute for regular visits to your optometrist.

At the end of the study we aim to publish the findings in an internationally peer reviewed journal.

What will happen if I don’t want to carry on with the study?

You are free to withdraw from the study without an explanation or penalty at any time.

Complete the form below

If you would like to take part in the study please complete the form below.


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Characteristics and Impact of Nystagmus in Children With and Without Down’s Syndrome Research Study

A study by the Down’s Syndrome Vision Research Unit and Research Unit for Nystagmus (RUN), School of Optometry and Vision Sciences are looking to recruit children to take part in a research study.

What is involved?

Your child’s vision will be tested by a qualified optometrist in the Special Assessment clinic. This will take approximately 30 minutes to 1 hour. An eye movement recording will then be performed using an infrared eye tracker while your child look at some cartoons!

Sign up

If you would like your child to take part, please complete your details below and the team will be in touch. By completing the form you are giving us permission to pass on your details to the relevant research team.


My bouncing eyes baby!

Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am very proud and also very lucky to have Scarlett in my life. Each day she is just a mass of love and giggles, always with a song to sing.

Scarlett, despite being pleased by the simple things in life, is medically very complex. Diagnosed at four and a half months with Optic Nerve Hypoplasia, Scarlett has no useful vision. When she was first born I do recall the frequent movement of her eyes. I also remember telling myself it is because she is curious, she is taking in the world, or whatever subject was trying to grab her attention,but this just didn’t quite cut it. I told myself that for many weeks, until one day yet another person highlighting the fact that Scarlett’s eyes never really fixed on anything and constantly danced around became too much to ignore. I took her to Bolton Eye Hospital for further investigation. We were told that her eyes moved around due to Nystagmus and that her sight was affected due to an under development in her optic nerve and that perhaps her sight may improve slightly, but I was relieved to find it would not deteriorate any further. Due to Scarlett’s age we did not know what sight she had, if any.

As she has grown older, Scarlett has given us no indication that she has any sight. She has additional needs which affect her social interaction and communication and her learning. Therefore, she has yet to confirm if she sees anything through her big blue bouncers. I suppose I have become accustomed now to the unknown: whether she can see, whether she can talk, whether she will ever function cognitively at a level appropriate for her age. Of course I get asked, by family, other children and strangers. I have also become accustomed to saying ‘I don’t know’.

Despite the complexity of my daughter and the gorgeous enigma that she is, I can say one thing for sure that she is truly happy. She has no awareness that she is any different and exists within a beautiful bubble all of her own.

Through being the parent of such a special little girl I have been on lots of adventures! My involvement and my full time job is running the online support and information network for charity VICTA Children. was born out of my desire to want to help and seek support from families who were also raising visually impaired children. The network/community has been live now for three and a half years and continues to grow every day. Not only do I share my own personal experiences about Scarlett, but I offer an online platform to parents, carers, professionals, charities and organisations and people with a visual impairment to publish anything they wish! This has been a great experience for me and I have met many fantastic people along the way, people who have helped during the hard times, inspired when you feel like you are standing still, been a shoulder to cry on and I’ve heard some exceptional stories from which I have found such strength.

I have learnt that you might not always know what the future may hold, but that’s okay as no matter what plans you lay or expectations you have, you only have this one moment and you need to keep pushing to make it the best moment yet.

University Hospital Southampton Questionnaire Study 2017

Would you like to participate in a study researching the support and information available for people with Nystagmus and their families? The team based at the University Hospital Southampton are running a short study – if you would like to get involved please get in touch by completing the form below. By completing the form you are giving us permission to pass on your details to the relevant research team.
Thank you.



Nystagmus Network Research Strategy 2017-19

One of the main goals at the Nystagmus Network is to encourage research with a view to finding treatments, a cure and to improve the everyday lives of those with nystagmus. In order to meet this goal, the charity has created a Research Strategy which will enable the Nystagmus Network to plan its involvement with the research community.

With a clear strategy, the charity will be able to identify a subject(s) which it wishes to focus on within a defined lifetime cycle. This consolidated approach has the potential to lead to quicker gains and developments in the chosen subject rather than adopting a broader funding approach.

As part of the Nystagmus Network’s research goal is based on improving the everyday lives of those with nystagmus, it has led the charity’s research committee identifying “Quality of Life” as a subject it wishes to focus on over the next three years (2017-19).

By adopting a more specific funding approach the charity will be able to see clear progress in the work it funds. It is expected that within a defined time period the charity would see developments which has or could lead to change in the research subject selected. This would meet the charity’s overall goal of driving forward the research into nystagmus in each research cycle.

The Nystagmus Network Research Strategy will be set for a three-year cycle where all the research funded relates to one specific subject. Once the three-year cycle is over the charity will change its focus to another research subject as agreed by the Nystagmus Network research committee.

As part of the Research Strategy the charity will have a pre-defined set of deliverables which is expected from all its research projects. This would start with how the charity expects its funding applications to be completed to how quickly it expects any results to be submitted for publication. Some examples of these would be:

  • Reporting – every three months during the life cycle of a project
  • Publication – within 12 months of the completion of a project
  • Open Day – researchers must attend and present their work at the Nystagmus Network Open Day (through a poster session)

Although the Research Strategy is set for a three-year period, the charity will review it on an annual basis annually to ensure it continues to meet the charity’s overall research aim.

Funding plan

To have a three-year funding plan it is important to identify how often the charity plans to fund projects during this period. The charity wants to ensure that it funds enough projects which will have a dramatic impact on the nystagmus community without over saturating the research into the chosen research subject.

The research strategy will be based on a two-pronged approach in terms of funding. The first approach will be through a small grants scheme where the charity will provide funding for a maximum of three small research projects based on the charity’s research subject per year. These projects would be small in their scale and cost to the Nystagmus Network and there will be deadlines of final reports due within 3 months of their completion. As part of the grant agreement, all researchers would be required to attend and present their work at the Open Day. Funding for these projects will be from the charity’s general funds that form part of the yearly budget and would range from £1,000 to £2,000 per project. However, this overall funding amount is subject to change.

The second approach will be to apply to external funders in conjunction with a research team for a large scale project based on the charity’s chosen research subject. This project would last for a three-year period and clear reporting deadlines will be set so that updates can be communicated with the nystagmus community. This large project will not form part of a financial guarantee of the charity’s research commitment, but it will reflect its intention to work with the research teams to secure larger scale funding.

Project workflow

To find each short study the charity will either put a call out for proposals or will contact a research team about a project idea. The charity plans to work 6 months – 1 year in advance so that it can ensure the projects start on time. By taking this approach it will mean there is no delay in the charity providing funding as there will always be projects lined up in advance for it to fund. As the funding is coming from the charity’s general funds there should be no break in providing funding on a yearly basis. The long term study will involve a more rigours process. The charity plans to have a project idea and proposal from a research team at least a year in advance so that the funding can be investigated. It may take a few months to apply and secure the financial commitment from an external source so it needs to be completed well in advance of the project start date.

Area of research – quality of life

To enable the charity to focus its research funding between 2017-19 the Nystagmus Network research committee has agreed to focus on the subject of “quality of life for those with nystagmus”. The charity plans to look deeper into this subject whilst also “piggy backing” on any current or upcoming research into this area. This could include joint funding awards with other charities or supporting existing projects with additional funding.

What is important is that the charity encourages research into this area which covers all aspects of nystagmus. Some suggested research topics are:

  • Adults with acquired nystagmuswhat impact has nystagmus had on existing relationships?
  • Children with congenital nystagmuswhat is the social impact of nystagmus in a small social setting?
  • Children with acquired nystagmusdoes acquired nystagmus have a detrimental impact on a child’s ability to learn?
  • Parentshow do parents perceive their child’s nystagmus?
  • Siblingsdoes nystagmus impact their sibling’s quality of life?
  • General nystagmus subjectdoes one type of nystagmus (congenital) have a greater impact on quality of life than another?

The subjects above are suggestions for small scale research projects which could provide interesting insights.

Become a member of the Nystagmus Network

As a small charity, the Nystagmus Network relies heavily on regular income from membership subscriptions. Over the years our membership has steadily grown and at the same time the cost of subscriptions has remained fairly static. This means that we are supporting an ever growing nystagmus community on a fairly modest income.

To find out more about our membership please check out the video below which features our Chairman Richard Wilson talking about how membership has a big impact on the work we can do at the charity.

We are not planning any increases in our subscriptions

It is important to us to keep membership affordable for everyone, regardless of income, so that they can all enjoy the benefits. What we are trying to do, however, is streamline things a little so that we can be sure of a steady stream of funds to enable us to continue our vital work, supporting those affected by nystagmus and their families, providing information to schools and other professionals, raising awareness of the condition and fostering research into diagnostics and potential therapies.

Having said that, building our membership is important to us in far more significant ways than simply the income it brings. The more people we represent who are affected by nystagmus, or have an interest in the condition, the better able the charity will be to influence real change. Being able to evidence that we represent a large body of nystagmus stakeholders will allow us to be a major player in serious scientific and medical research programmes both in the UK and internationally. It will allow us to apply for major grants to develop our own projects, stage conferences and hold events for families and groups of young people and adults, to help dispel the isolation suffered by those, in particular, affected by acquired nystagmus.

If you are already a member of the Nystagmus Network, even if your subscriptions may have lapsed, we will be writing to you shortly to explain to you how you can help us by paying your subscription in one of two ways.

The first is by paying for a yearly membership via Shopify which costs £20.

The second option is by setting up a monthly payment via Justgiving where you can decide how much you would like to pay.

Nystagmus Network membership benefits

And what are the benefits to you as a fully paid up member of the Nystagmus Network?

You have full access to all our downloadable documents for parents, adults and teachers as well as information on benefits via our website here.

You can call on our peer-to-peer support service at any time which means that a member of our trained volunteer team will be at the end of the phone or an email to offer a friendly ear.

You can take advantage of a free place at our annual Open Day, where you can meet up with others affected by nystagmus and hear all the latest news from leading nystagmus experts.

You will continue to enjoy our fortnightly newsletter, Focus, which will drop straight into your email inbox.  We welcome contributions from members.  So if you have a nystagmus story you’d like to share, please let us know. You can email us at [email protected].

Finally, you will know that as a Nystagmus Network member you are part of a growing body of people shaping the future of nystagmus support, awareness and research.

Thank you again for joining us and please know that your membership is valued.

Want to become a trustee at the Nystagmus Network?

As we all go into 2017, are you looking for a new opportunity to give your energy, time, skills and talent to support the Nystagmus Network? We need people to join our team of volunteer Trustee to guide and direct the Nystagmus Network. Trustees have particular legal responsibilities under charity law. The skills, talent and experience we are particularly interested in are:-

  • Charity governance and legal expertise
  • Financial knowledge and accounting
  • Research commissioning and review expertise
  • Risk management and auditing
  • Fundraising – and energising others

As a minimum commitment, Trustees need to be able to attend meetings in London on a Saturday once a quarter, and to join other meetings of at least one of our sub-committees by phone perhaps every two months or so, and have the time to invest in some support work and planning activity, probably taking up a few more hours a month. We will meet reasonable travel expenses.

If you have time to give us, then please drop us an email at [email protected] with a brief summary of your skills and what you can bring to the charity to help us grow and develop.  We would like to start talking to prospective new trustees from the end of January.

If you have any immediate questions, then feel free to contact our Chairman, Richard Wilson, on 07964 887 104.

An inspiring story about passing exams!

We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom.

Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from Nystagmus Network Trustee and Education Advocate, Frances Lilly and Rory Cobb of the RNIB.

When Meg first approached the school and the QTVI, there seemed to be little advice or information available about adaptations and support for Lily to take the test. Could it be that some teachers do not expect children with a visual impairment to have aspirations to become academic high flyers?

What began as a two paragraph note from the QTVI about, among other things, blowing up the test papers on to A3 paper, ended as a four page document of detailed instructions on how different parts of the examination, including a multiple choice test on the computer, could be adapted and made accessible for Lily, in particular being printed on manageable A4 pages, giving her an equal opportunity to succeed alongside her fully sighted class mates.

“The opportunity to discuss the exam with Frances and Rory was invaluable. I could voice my concerns and they helped me to identify issues and offer suggestions/solutions to the school. It also gave me the determination to make sure that Lily had an equal chance when sitting the exam.” – Megan

Lily is a confident girl and was not sure that she would need the 25% additional time she was entitled to. This is not uncommon among VI students who do not want to appear to their friends to have any kind of special need. Like many other parents, however, Meg managed to convince Lily that the time could be very useful to her and could be used to check her answers and make sure she had not missed out any questions.

On the day of the test Lily triumphed. There was a slight hitch with the computer screen and Lily admits that she may have had to guess the answers to a couple of the multiple choice questions, but she passed. This ambitious young lady is now set on a path of high academic achievement thanks to her Mum, the RNIB and the Nystagmus Network.

If you or your child have a similar experience to Lily and Megan, or would like to share a story with the nystagmus community please get in touch with us!

Merry Christmas everyone!

Merry Christmas everyone!

It’s been a very busy year at the Nystagmus Network with lots taking place! Our Chairman Richard has a short Christmas message he would like to share with you all – please click on the image below or the link here to watch it.

Thank you for our support in 2016!

Finally, we would like to say a big thank you to everyone who has supported the charity in 2016. We have big plans for next year which we hope will make a massive impact on everyone in our community!

Have a great day and a very Merry Christmas from everyone at the Nystagmus Network!