GMWRAG has once again been invited to attend the Nystagmus Network Open Day on Saturday the 29th of September 2018 in Birmingham at the Macdonald Burlington Hotel and we’ll be running 2 workshops and a drop in session. The 1st workshop will be for parents of children with Nystagmus and will focus on claiming DLA. The 2nd, unsurprisingly, will focus on claiming PIP for adults. In-between we will be trying to grab some lunch and running a drop in session for people who couldn’t make the workshops.
As a consequence of our attendance a slightly amended version of our booklet on DLA, PIP and Nystagmus is now available. However, the main reason we’re publicising our attendance at said event is to remind people that GMWRAG members are available to attend events; give talks and maybe even provide (chargeable) training across the North West and occasionally further afield if practical and there are no alternatives closer to home.
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.
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.