Any positive outcomes from this?

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Bulls Eye
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Keratoconus: Yes, I have KC
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Any positive outcomes from this?

Postby Bulls Eye » Sun 06 Aug 2017 9:28 pm


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John Smith
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Re: Any positive outcomes from this?

Postby John Smith » Fri 11 Aug 2017 11:21 am

I wasn't involved with this at the time, but I don't see such a thing at Moorfields when I visit.
John

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Bulls Eye
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Any positive outcomes from this?

Postby Bulls Eye » Fri 11 Aug 2017 2:13 pm

Presumably then sad outcome is it was negative.

Loopy-Lou
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Re: Any positive outcomes from this?

Postby Loopy-Lou » Wed 23 Aug 2017 4:27 pm

Bullseye, I have directly spoken with Anne, and she did raise it with Moorfields but they didn't address it.
Disabled People Against Cuts (which includes people with visual impairment) have given evidence to the UN at Geneva this week because the Special Rappoteur reported last year on "grave and systemic violations" against disabled people in the UK especially regarding both in-work and out of work disability and sickness benefits. The sanctions regime and in-built waiting times of 6 weeks up to 12 weeks have caused record numbers of evictions and foodbank referrals. Likewise for people in receipt of Jobseekers Allowance. I continue to be concerned about this but I think it would need a multi-organisation (all eye charities) signed letters to eye hospital Trusts to ask them to address this for people on the lowest incomes ranging from £73, £56 a week to 0, and to collect hard data such as patients not using saline, refreshing soaking solutions daily, or leaving lens out because of the cost of solutions and saline. I think it would also be worth raising at events alongside the need for visual registration to take account of variable visual acuity which is most pertinent with KC which would be useful regarding work and education. Again, I think it needs a number of groups and big name charities to back this, but it might be worth patients of any hospital writing to raise the issues with your local eye hospitals. Individuals can exercise pressure too.


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