Newsletter issues

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Joined: Wed 18 Apr 2018 1:29 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Newsletter issues

Postby Green » Fri 15 Sep 2023 6:51 pm

Some very good issues raised in the recent issue, great to see Dan's research and patient involvement in the RCOphth, both ophthalmologists & optometrists need patients involved in training and not just 'success stories', they also need to hear about the opposite end, what we find (un)helpful, and the psychosocial impact which is rarely enquired about.
Which brings me to the financial difficulties highlighted such as applying for PIP. Professional verification is needed this reminds me of conversations we've had in previous years regarding proving needs (in any respect) when you're not registered as SVI.
KC falls between the cracks here, despite many of us being SVI for periods in our lives before/after surgery, complications, problems with lenses, problems with lens handling and wear time, lens phobia/panic, relationship to other conditions.
Unless as a patient group we push for a 'variable impairment' addition to registration which I don't think will happen without massive work and with professional support, we need to look at alternatives to help people.
One would be a short simple letter from optometry to state patient X doesn't possess reliable static visual acuity because of ABC. That would support the detail on a form and that's achievable,.

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