Marsha and George stand together in a parliamentary council chamber.

George gives his oral evidence to the APPG

George has not yet completed his first month as an intern Information Support Officer with the Nystagmus Network. This week he was given a very special assignment, to give oral evidence to the APPG on eye health and visual impairment as they undertake their inquiry into employer attitudes and blind and visually impaired people.

Stepping into the historic halls of Parliament, I felt a mix of excitement and nerves. As a visually impaired individual, the opportunity to speak at the All Party Parliamentary Group (APPG) on Lived Experience was not just a chance to share my perspective but also a responsibility to advocate for greater inclusivity in the workplace. Chaired by the esteemed MP Marsha de Cordova, the session focused on gathering oral evidence for the inquiry into employers’ attitudes towards individuals with visual impairments.

Representing the Nystagmus Network was both an honour and a privilege. As an advocate for individuals with visual impairments, I had the opportunity to shine a spotlight on the invaluable work carried out by the Nystagmus Network in supporting people living with nystagmus.

One of the most striking aspects of the session was the genuine interest and engagement from the other speakers and hearing about their own personal experiences. Marsha de Cordova’s leadership fostered an environment where every voice was not just heard but valued. As she turned to me for my response, I spoke passionately about the barriers faced by individuals with visual impairments in securing and maintaining employment. From inaccessible job application processes to the lack of accommodations in the workplace, I highlighted the systemic challenges that often hinder the professional aspirations of individuals with sight loss. Drawing from my own journey, I emphasised the importance of proactive measures such as reasonable adjustments and awareness training to create more inclusive work environments.

The exchange that followed was not just a dialogue but a catalyst for change. Marsha de Cordova’s thoughtful questions and receptiveness to our testimonies signalled a genuine willingness to address the issues at hand. Through open and honest conversation, I felt a sense of optimism that real progress could be made towards dismantling barriers and fostering greater inclusivity.

Leaving Parliament that day, I carried with me a renewed sense of purpose. While the road ahead may be challenging, the experience reaffirmed my belief in the power of advocacy and collective action. As Marsha de Cordova continues to champion disability rights within the halls of Parliament, I remain committed to lending my voice to the cause and working towards a future where every individual, regardless of their abilities, can thrive in the workplace.

In conclusion, my participation in the APPG Lived Experience was not just an opportunity to speak truth to power but a testament to the resilience and determination of individuals with visual impairments. Together, let us continue to advocate for a world where inclusivity is not just a goal but a reality for all.

George Plumridge

 

 

University students studying together in a library.

Making university life better for visually impaired students

Research participation opportunity

Developing university guidance for the socio-emotional needs of students with vision impairment

PARTICIPANT INFORMATION

You are invited to take part in a research project conducted by the Institute for Mental Health, the University of Birmingham. This research work is led by Dr Ifigeneia Manitsa, Research Fellow in Youth Mental Health.

Before you decide, it is important for you to understand why the research is being done and what it will involve. This Information Sheet will tell you about the purpose of the research, along with its potential risks and benefits.

If you agree to take part, we will ask you to sign a Consent Form. If there is anything that you are not clear about, we will be happy to explain it to you. Please take as much time as you need to read it. You should only consent to participate in this research study when you feel that you understand what is being asked of you, and you have had enough time to think about your decision.

It is up to you to decide whether or not to take part. If you decide to take part, you are still free to withdraw at any time during your participation in this study and without giving a reason. If you have any further questions, please contact Dr Ifigeneia Manitsa at [email protected]. If you have any medical/other problems which make it difficult for you to read this information, please contact Ifigeneia for a verbal explanation of the research. If you choose not to take part at all or decide to withdraw your data, you will not be paid for your participation.

When you are happy that you have all the information you need to be able to decide whether or not you would like to take part in the study, please complete the enclosed consent form and return it to Dr Ifigeneia Manitsa at [email protected].

Current Study

The Institute for Mental Health at the University of Birmingham in collaboration with the Vision Impairment Centre for Teaching and Research (VICTAR), Kingston University, University of Edinburgh, Abertay University and Bristol Sensory Support Service are conducting research to understand more about the university experiences of individuals with vision impairment who are currently enrolled and pursuing a university degree (undergrad, masters, and doctoral students) and/or have recently (within the last five years) completed a university degree in the UK. This research project is also looking at the experiences of professionals from national organisations (e.g., consultants and habilitation officers) and university staff (e.g., academics and disability officers) supporting students with vision impairment in Higher Education. This project is funded by the Thomas Pocklington Trust Grants Programme.

What do I have to do?

This study will consist of two phases. First, we would like you to complete a short demographic questionnaire and participate in an online interview with us via Microsoft Teams in September/October 2023 (Phase 1). The online interview will last approximately one hour, and you will be asked to talk about your experiences in Higher Education and what type of support you are receiving (or received) during your university degree. We would also like to hear your ideas and suggestions for how universities might better support students with vision impairment in the future. Then, our research team will need some time to analyse the data that we will collect during Phase 1.

In Phase 2 that will run from February to April 2024, we would like to conduct three online 60-minute sessions with 4-6 students with vision impairment. Researchers will ask some questions and you will be able to share your thoughts and experiences about the support you receive with others in these online sessions. You will also be asked to discuss the findings of Phase 1 and discuss the socio-emotional support that should be provided to people with vision impairment in Higher Education. In addition, during these online group sessions, the research team may ask you to discuss the mental health and wellbeing guide provided by Thomas Pocklington Trust for students who want to go to university (https://www.pocklington-trust.org.uk/student-support/university/mental-health-and-wellbeing/). The transition guide “Your future, your choice: bridging the gap” developed by RNIB and VICTAR (https://media.rnib.org.uk/documents/Your_Future_Your_Choice_Bridging_the_Gap.pdf) and some of its online resources may also be used and discussed during these online sessions. You may also wish to follow up comments that other people have said and to ask your own questions. You do not have to answer every question, nor should you feel pressurised to talk.

Considering we can only recruit up to 4-6 students with vision impairment for our online group sessions, we will have to give priority to the students who contact us first. Furthermore, you can decide to only participate in Phase 1 if you do not wish to participate in Phase 2.

We will also be conducting focus groups with people with professionals who work in UK universities to support students with vision impairment.

How will the things I say be used?

Overall, this research project aims to explore the lived experiences of students with vision impairment in Higher Education and to identify the lack of holistic and person-centred approaches to the socio-emotional needs of individuals with vision impairment wishing to attend HE in the UK. This project also aims to initiate the development of university guidance that will address their socio-emotional needs and educational inclusion.

After each session, a summary report with the main findings will be sent to you. Descriptions of research findings will be published in newsletters of the professional support groups and educational institutions involved. In addition, we will publish the findings from the study in scientific journals and will present the results at relevant conferences. No names and identifying information will be published in any reports and future publications. A full report will be submitted to the Thomas Pocklington Trust who may wish to upload it on their website. All of your personally identifiable information will remain anonymous and confidential.

We will video record the focus groups so that we have an accurate recording of the discussion.

Most participants enjoy taking part in research however if this brings up unwanted feelings and you wish to talk it over potential sources of advice are:

The Samaritans – phone: 116 123; email: [email protected]

Citizens Advice – www.citizensadvice.org.uk

RNIB Helpline – 0303 123 999

Will what I say be anonymous?

In our publications and reports your responses will be anonymised but in rare cases where someone knows you very well others may be able to recognise you. Also, the other participants in the online group sessions will hear your responses. We will remind participants that what is said during these sessions must not be discussed outside these online group sessions; however, this relies on everybody sticking to this rule. Further, if you choose to use your camera during the teams call, you may be visually identifiable. You can choose not to turn on your camera if you prefer.

If, during the course of the interview, you inform us that you or someone you know is at serious risk of harm, we will take the appropriate advice and act accordingly.

What should I do if I change my mind?

During the course of the online group session, you can leave at any time by clicking on the ‘leave meeting’ button. Your data will not be included in the research.

If after taking part in an online interview and/online group session you decide that you no longer wish to take part in the project, please email the project lead Ifigeneia Manitsa ([email protected]) and we will remove and permanently delete your data. You must do this within one week of taking part in both tasks (online interview and online group session) otherwise we will not be able to remove your data as we will have begun to analyse it.

Where will data be stored?

The data collected will be kept in locked or password protected storage at the University of Birmingham or held on a password protected database. All information gathered about you will be stored separately from any information that would allow someone to identify who you are (this is known as personal identifying information, e.g., your full names, your address, your contact details). Your personal identifying information will be stored on a local password-protected server and only members of our research team will have access to it. We will only be able to trace the information we have collected about you back to you using a special reference number which we will store in a password protected database held at the University of Birmingham. Only members of our research team will have access to that database. Personal identifying information will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 2018 and the General Data Protection Regulation (GDPR) 2018.

Do I get anything for taking part?

In Phase 1, as a token of appreciation for your time you will receive a £20 payment.

In Phase 2, you will receive a £20 payment after each online group session (three payments in total).

If you need a carer present during the interviews to support you, then an additional payment of £10 will be offered to your carer for assisting you during the interview process.

What will happen to the data afterwards?

The information that you provide will be stored on a local password-protected server and only members of the research team will have access to it. All personal details will be kept separately from the information collected. Participants will be identified by a unique number so that it will only be possible to connect results to individuals via this number. This will ensure that results are kept anonymous.

At the end of the study, your personal details will be destroyed unless you tell us otherwise.  This means that we would no longer be able to trace the results of your assessments back to you. It is optional for you to be contacted by the same research team for future ethically approved research of similar nature. If you agree, the research team will contact you according to your preference via phone or email. If you agree to be contacted for future studies, you do not give consent to future studies. This option does not impact on the participation of this study or any future study. This database is password protected and only approved members of our research team have access to your details.  We do not share your details with anyone outside the research team.

What happens if I decide that I no longer want my details on the database?

All you would need to do is contact Ifigeneia, the Principal Investigator of the study, at [email protected]. Your details will be removed from the database immediately.

Consent

After having read all the information and having received appropriate responses to any questions that you may have about the study you will be asked to give your consent to participate in the study if you decide that you do wish to participate. We need to receive consent from you in order for you to participate.

Withdrawal

You are free to withdraw from the study within 7 days from taking part in the one-to-one interview (Phase 1) and each online group session (Phase 2). Should you choose to withdraw from Phase 1, you can also request that any data collected from your participation be withdrawn from the study. If you request this, any data collected from you will be located and destroyed. However, once each online group discussion is complete (Phase 2), we will be unable to destroy any of your data. However, we will exclude them from the analysis. Even if you decide to withdraw from the study, you will still receive your compensation.

What if there is a problem?

If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. Please contact the Principal Investigator Ifigeneia Manitsa at [email protected] in the first instance. If you remain unhappy and wish to complain formally, you can contact: Professor Ed Wilding; Head of School; School of Psychology, University of Birmingham, Birmingham, B15 2TT, by email: [email protected] or by phone on 0121 414 4931.

Review

The study has been approved by the Science, Technology, Engineering and Mathematics Ethical Committee.

Further information

If you would like any more information about the study, please contact the Principal Investigator Ifigeneia Manitsa at [email protected].

Research team

Principal Investigator: Dr Ifigeneia Manitsa, Research Fellow in Youth Mental Health, Institute for Mental Health, School of Psychology, University of Birmingham, [email protected]

Co-Investigator: Dr Rachel Hewett, Associate Professor, School of Education, University of Birmingham

Co-Investigator: Dr Fiona Barlow-Brown, Associate Professor, Department of Psychology, Kingston University London

Consultant: Professor John Ravenscroft, Moray House School of Education and Sport, IETL, University of Edinburgh

Consultant: Dr Mhairi Thurston, Senior Lecturer, School of Applied Sciences, Abertay University

Consultant: Dr Joao Roe, Head of Sensory Support Service, Bristol City Council

A close up of someone wearing eye test glasses and the words 'Funding visual impairment a landscape view'.

A new report highlights the need for more investment in sight research

Nystagmus Network’s Sue is proud to have played a small part in the work behind a new report, published by NPC today, into the lack of funding for visual impairment.

The key headlines of the report:

Our message 

  • Funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss. 
  • Eyesight is the sense people fear losing the most. Many consider it to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss. 

Philanthropy context 

  • At present, most money goes to services which improve quality of life – just 3% goes to research. These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies. 
  • Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams. More philanthropic funding therefore has the potential to make a huge difference in this sector. 
  • Giving more to medical research and systemic change needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity. There’s plenty of room for growth. 
  • We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term. 

Policy context 

  • The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare.  

Facts about visual impairment 

  • More than two million people in Britain live with sight loss severe enough to significantly impact daily life, with the number expected to double by 2050. Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%). 

About this research 

  • This research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. It examines what the NHS and local government are already doing, and where philanthropy can add value. 

Download the full report here

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).

Libby smiles at the camera.

Can you help Libby with her research?

Introducing Libby

I am a geography student studying in my final year at Loughborough University. 

I am seeking participants for my dissertation study which aims to explore the experiences of young adults (18-25) in their local space / environment & the impacts on identity formation.

This study is inspired by my two younger sisters, who both have nystagmus. 

I am seeking individuals who would be able to offer me an hour of their time to chat and discuss their experiences of entering the ‘adult world’ with a visual impairment. I am open to hear about experiences of people who use visual aids and those who choose not to.

The aim is to increase awareness of the daily experience individuals with VI have, be that positive or negative.

I am currently seeking around 5-6 participants aged 18 to 25.

Due to COVID-19, I am unable to meet individuals in person.

To find out more or to take part, please email Libby at [email protected]

Disclaimer: This study has full ethical clearance and is fully insured by Loughborough University.

Ifigeneia stands in front of a whiteboard in a lecture theatre.

Calling parents of 12-14 year olds – research questionnaire

Ifigeneia Manitsa is a Psychology researcher at Kingston University London and her research is about the social and academic inclusion of adolescents with and without visual impairments.

She is currently conducting a study looking at the relationship between school engagement and social behaviour in adolescents with and without visual impairments. She is also interested in investigating teachers’ perceptions of the inclusion of adolescents with visual impairments.

She would like to interview adolescents with visual impairments, aged 12-14 years, who attend mainstream or mainstream schools with special resourced provision, their parents, and teachers. The adolescents who participate in this study may have visual impairment, but they do not have any other learning or cognitive disabilities. In addition, QTVIs (Qualified Teacher of the Visually Impaired) and teaching assistants/support staff have been excluded from this study.

Adolescents’ questionnaires will take approximately 10-15 minutes to complete and they can be completed via Skype/Zoom. Their parents and teachers’ questionnaires will take approximately 10-15 minutes and they can be completed online.

Would you be interested in participating in this study or do you know someone who could be interested in participating? If yes, please do not hesitate to contact Ifigeneia.

Email Ifigeneia to take part: [email protected]  

Technology use in young people with impaired vision: a new study

Guest post from Saima Begum, University College London

I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.

This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.

There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.

Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.

Participants are invited, between the ages of 11 and 18.

All questionnaires can be completed online, and participants can do this from the comfort of their own homes.

Click or tap here for the questionnaire 

The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.

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.

Mousetrap VI Theatre Trip

If you would like to take part in a family event especially for children and young people who have a visual impairment, Nystagmus Network is offering you the opportunity to join a special London theatre experience for families.

The Little Match Girl and other happier tales

For adults and brave children alike, expect music, puppetry, dark magic… and perhaps some modern truths that we would all rather remain hidden.
  • Sam Wanamaker Playhouse, 21 New Globe Walk, Bankside, London SE1 9DT
  • Sat 7 April, 10.00am to 3.40pm
  • £10 for young people (18 and Under), £12.50 per adult
  • Age 9+
These tickets are offered to family groups where one or more of the children in the family have a visual impairment, and their sighted siblings. Maximum of 6 tickets per family.

 

For full details and how to book, please click the link to Mousetrap Theatre Projects.