GMWRAG is again running 2 workshops at the Nystagmus Network Open Day on Saturday the 7th of May 2016, which this year will be held at the Hilton Hotel in Reading. The connection between GMWRAG and the Nystagmus Network was established when we were invited to attend their first ever northern Open Day in Manchester in 2012.
Nystagmus is an involuntary movement of the eyes which seriously reduces vision; the time to see, and, makes sharp vision impossible. Few people with Nystagmus in the UK can drive. Most encounter difficulties in everyday life, education, employment and social interaction. Visual functioning scores are worse than for diseases like age-related macular degeneration (AMD) because the macular/fovea is not fully developed in people with Nystagmus.
Last year 2 GMWRAG members attended for the first time and we ran workshops on DLA for children with Nystagmus and PIP for adults with Nystagmus. Both workshops were busy and felt by all concerned to be successful. We’ll be running updated versions of those two workshops this year.
There is plenty of information out there about DLA or PIP claims for the visually impaired but inevitably this is generalised. As a consequence of these workshops GMWRAG produces the only literature we’re aware of that’s specifically about Nystagmus and DLA/PIP.
The latest version of the booklet we use for the workshops is on our workshops page and will soon be up on the NN site itself. The sections on the practicalities of form filling have general applicability but the section on the specific impacts of Nystagmus will be useful for anyone struggling to understand any visual impairment which isn’t total blindness but doesn’t seem to be about distance vision.
GMWRAG members are always happy to talk to organisations representing people with specific medical conditions about how we can assist their members learn about benefit entitlements. We can’t guarantee to work out of area. Our focus remains very much on Greater Manchester and the North West of England/North Wales, but, Contact GMWRAG and we’ll see what we can do.