Joint letter calls on health leaders to improve eye care for children and young people with learning disabilities


From the Visionary newsletter: SeeAbility’s Eye Care Champions have led the writing and submission of a letter to the Secretary of State for Health and Social Care and Chief Executive of NHS England with their easy read ‘manifesto’ for better eye care for people with learning disabilities. This submission has been supported by Visionary and over 80 … Continue reading Joint letter calls on health leaders to improve eye care for children and young people with learning disabilities

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) … Continue reading Reform for children and young people with SEND

Curriculum Framework for Children and Young People with Vision Impairment (CFVI)


Defining specialist skills development and best practice support to promote equity, inclusion and personal agency. Overview of the CFVI The Curriculum Framework for Children and Young People with Vision Impairment (CFVI) has been developed to support children and young people with vision impairment access an appropriate and equitable education.  The framework presents outcomes within 11 … Continue reading Curriculum Framework for Children and Young People with Vision Impairment (CFVI)

Parent Power April


The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend a further session in our series of Parent Power webinars. Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and … Continue reading Parent Power April

More Parent Power coming soon


The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend our periodic Parent Power webinars. Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, … Continue reading More Parent Power coming soon

Parent Power this February


Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars. Each webinar, led by Karen, from IPSEA (the Independent Provider of Special … Continue reading Parent Power this February

What do we see?


In answer to the question ‘What does a visually impaired child see?’ the Thomas Pocklington Trust has produced a new video simulating the 5 most commonly seen forms of vision impairment in children and young people, including nystagmus. The film, What do we see? 2, shows what it’s like to have nystagmus, retinitis pigmentosa, infantile … Continue reading What do we see?

Parent Power is back!


Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars. Each webinar will introduce parents to the special educational … Continue reading Parent Power is back!

Frances Lilley


Frances Lilley has decided to stand down after 5 years as a Trustee of Nystagmus Network.  During this time, she has been performing the role of volunteer education advocate and has provided invaluable advice to countless parents to guide them through the complex and, quite often, challenging world of EHC plans and the support that … Continue reading Frances Lilley

Sue’s at VIEW


The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually. The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown. Sue’s virtual presentation on nystagmus in the classroom is exciting lots of … Continue reading Sue’s at VIEW