Parent carer voices are essential to help shape the services they need for their children and young people.
The East Sussex Parent Carer Forum would like you to get involved.
East Sussex Parent Carer Forum – get involved
Our new Facebook groups
The Nystagmus Network has launched 3 brand new official Facebook groups this week to help members of the nystagmus community come together to share their experiences, their problems and their successes and offer each other help and encouragement when it’s needed.
All three groups have Nystagmus Network staff members Sue, Sara and Debbie as admins to make sure everyone gets the information and support they need. They are joined by our trustees and volunteers from time to time, depending on the subjects under discussion.
Join our Facebook Parents’ Group here
The Nystagmus Network Facebook Group for parents of children and young people with nystagmus. Share your experiences of diagnosis, early years and education support.
Join our Facebook Adults’ Group here
A Nystagmus Network Facebook Group for adults living with acquired or congenital nystagmus. Share your experience of employment, sports and leisure, getting around and general day to day living.
Join our Facebook Friends’ Group here
A Nystagmus Network Facebook Group for our fundraisers, members and supporters.
To keep up to date with all our news and multiple posts daily, please visit
our Facebook Page
Join us at the Manchester meet up
The next meeting of our north west regional Nystagmus Network support group is on Saturday, 25 April from 1 to 3pm in central Manchester
Adults with nystagmus, parents of children with nystagmus and anyone supporting someone with nystagmus are all welcome to come along.
The meeting is hosted by Nystagmus Network trustee, Marie Turnbull (pictured).
The focus of the meeting this time will be nystagmus research. There will be a short, pre-recorded film by Associate Professor and Consultant Ophthalmologist, Jay Self from Southampton University Hospital.
Jay will answer any research questions group members have about nystagmus, cure, treatment, testing, etc. You can email your questions in advance.
If you would like to join this regional group, come along to meetings and take part in the Q+A with Jay, please contact us today.
Thank you
Reading an optician’s prescription
Although glasses cannot stop nystagmus they can correct refractive errors, such as long or short sight and astigmatism, to make the sight as clear as it can be.
Do you understand what all the numbers and words actually mean on your prescription? Specsavers have made a handy video explaining everything. Watch here to find out from Dr Nigel Best DOptom MCOptom FBCLA FAAO, a qualified Specsavers optometrist.
Watch the video here.
What to expect from a visit to an Orthoptist
Orthoptists are trained specialists in diagnosing and providing non-surgical management of disorders of eye movements and associated vision defects.
BIOS, the British and Irish Orthoptic Society, has produced a series of guides to talk you through a typical visit to an Orthoptist. Please click the links below to see your chosen guide.
For people with learning disabilities or autism please select below
Get university ready with LOOK UK
When
Saturday 08 February – 13:00 – 16:00
Where
Thomas Pocklington Trust, Entrance D, Tavistock House South, Tavistock Square, London, WC1H 9LG
LOOK UK have teamed up with London Vision to run a free event for visually impaired young people considering university. Their ‘Get University Ready’ event is designed to empower visually impaired young people with the knowledge they need to make an informed decision about higher education.
Participants will learn about:
• Disabled Students Allowance (DSA)
• Support services available at university
• Reasonable adjustments
• Accessibility of course materials.
If you’re visually impaired, 14 and above and considering going to university, you can apply online, to get in touch with one of the LOOK team, email LOOK Events officer Elin Williams on: [email protected]
or call: 07470 872782
Please book your place by 26 January.
Places are limited! Book now!
Apply online here
A new article on oscillopsia
Many people who have acquired nystagmus experience oscillopsia from time to time. This is where they see a moving image of the world around them, rather than a still one. People with congenital nystagmus can also, occasionally, see objects moving around when they are not.
A new article, published online by Medical News Today, details some of the causes of oscillopsia, including, of course, nystagmus. It also details the diagnostic testing which can be carried out by the ophthalmologist when investigating the cause, describes the symptoms and mentions a few treatments which may be appropriate.
There is, sadly, no amazing new therapy to try, but the article does provide a useful summary.
Read the full article online by clicking here.
Into employment with VI
Latest study shows improvements for young people with vision impairment entering employment but more needs to be done
The latest results of a Longitudinal Transition Study published by the Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham and Thomas Pocklington Trust show an increase to those entering employment but inconsistencies of support across the country highlight that more needs to be done.
The study has followed the experiences of the same group of young people with vision impairment from secondary school into further education and employment.
Read the full report and the key findings here.
Take part in sight services research
You can take part in a new study of services for people with impaired vision.
Commissioned by major sight loss charities, the research aims to drive improvements to services.
Phone interviews last 40 minutes and anyone anywhere in the UK can take part. Participants will receive £30 as a thank you.
Please click here to take part.
Fingers crossed
Today at the Nystagmus Network we have our fingers firmly crossed. Why? Because we want to say a big THANK YOU to all the lovely national lottery players who helped make our Parent Power project possible.
Thanks to our National Lottery Community Fund grant we’re able to run a series of free workshops for parents at 5 locations across England.
At each workshop, parents and carers of children with nystagmus are learning about the legal rights of their children to support in school and, just a importantly, how to access it.
Want to join one of our workshops? We’re now taking bookings for London and Cambridge. Please click the links to apply.
The picture shows parents and Nystagmus Network volunteers with their fingers crossed at the first Parent Power workshop in Southampton earlier this year.
