Tag: Marsha de Cordova

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

 

 

L-R Peter Greenwood, Marsha De Cordova MP (holding Nystagmus Network T-shirt, Harshal Kubavat.

Nystagmus Care Pathway published

Publication of Clinical Practice Points for managing nystagmus in childhood


The Nystagmus Network has welcomed the publication of new guidance on the management of nystagmus in children by the Royal College of Ophthalmologists.
The purpose of the Clinical Practice Points, now available on the Royal College website, is to provide a single point of reference for busy clinicians when managing patients with this complex eye condition.

The Practice Points can be found online here

The Nystagmus Network contributed to the development of the Practice Points through its membership of NUKE, the nystagmus UK eye research group. Members of NUKE worked together to develop a Nystagmus Care Pathway which sets guidelines on diagnosis and care for patients with nystagmus – the first time such guidelines have been created for this condition.

Vivien Jones, founder and Honorary President of the Nystagmus Network, said “The adoption of these guidelines means that clinicians can now refer to them when treating patients with nystagmus – something that we hope will lead to continuing improvements in developing standardisation of medical diagnosis and care.”

Clinician Jay Self, University of Southampton, an author of the Practice Points and founding member of NUKE said “Managing children with nystagmus can be complex and nuanced. By sharing best practice, in an easy to follow guide, we hope to improve all aspects of care for children and their families.”

Coinciding with the publication, Nystagmus Network trustees met Marsha De Cordova MP, who chairs the Eye Health and Visual Impairment All Party Parliamentary Working Group. Trustees were able to brief the MP, who herself has nystagmus, on the future impact of the work that has been done and the publication of the Practice Points.

Marsha is pictured above (centre) with Nystagmus Network trustees Peter Greenwood (left) and Harshal Kubavat (right).

Trustees discuss Parent Power with Marsha

On Thursday 20 June, Nystagmus Awareness Day a group of Nystagmus Network trustees met with Marsha de Cordova MP in Parliament.

Earlier that morning, Marsha had tweeted her own Nystagmus Awareness Day video message in which she asked us all to celebrate the amazing achievements of people with nystagmus and support and encourage our children and young people with nystagmus to achieve their potential.

Watch Marsha’s video message here.

Among the many topics discussed at the meeting, trustees were able to tell Marsha about the charity’s brand new National Lottery funded project ‘Parent Power’ designed to provide parents and carers with the knowledge and skills they need to ensure that their children with nystagmus access the special educational support they need in school.

The picture shows Marsha with Nystagmus Network trustees, left to right, Vicky Pitman, Claire Brinn and Tim Cuddeford.

Congratulations, Marsha

Marsha De Cordova MP, Shadow Minister for Disabilities and MP for Battersea, features in the Shaw Trust’s Disability Power 100 2018. This is well deserved recognition for a person who has worked and campaigned tirelessly for disability rights, especially for those with impaired vision, and continues to do so.

The Nystagmus Network was delighted to welcome Marsha, who has Congenital Nystagmus, as our keynote speaker at Open Day 2018.

You can read details of Disability Power 100 here.

Charity trustees meet Marsha

On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible.

Meeting at Portcullis House, trustees, all wearing their Nystagmus Network T-shirts, briefed Marsha on the awareness-raising work of the charity ahead of her keynote speech at Open Day this September.

Open Day tickets for members – available soon

Tickets to the biggest UK nystagmus event of the year will soon be available to book. Subscribed members of the charity will be able to book their priority free tickets to our annual Open Day from 12.00 midday on Thursday 26 June. Members will be notified with details of how to book their places by email or post.

Any remaining tickets will go on sale on a first come, first served basis to non-members from Thursday 26 July at £27 per adult, £10 per child.

Marsha de Cordova MP – our Open Day keynote speaker

We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.

Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.

The photograph is by Graeme Robertson for the Guardian.