UK Keratoconus Self-Help and Support Association

I have it since I was 17. I am now 41 but I never felt it serious like other people on this site I have worked on off with not much problem I haven't got me eyes tested in few years now but I'm not looking state handouts or nothing but should I register officlly or does it make much difference as I said I'm happy what I get now and not looking to rip off the government I like some advice

Hi Pete,

Keratoconus itself is not a disability, although a few people are registered as sight impaired ("partially sighted") or severely sight impaired ("blind") and this enables them to access a range of benefits.

Most people function well with contact lenses and would not consider themselves as disabled. However some people find that there are times when contact lenses cannot be worn and this can be a big problem as sight impairment is based on best corrected vision. Unfortunately there is not a concept of being sight impaired for part of the time.

Lia

This is why registration needs to change to cover variable partial sight and everyone varies regarding impact but accessing support (not solely financial) is not that easy now as most things are very short term.

There is an issue here for people who might be sick/disabled in other ways and in receipt of ESA work related activity group or unemployed on JSA as both will be £74 a week, which after bills/food/travel leave little for contact lens solutions and saline. For people waiting/sanctioned that's a zero income, and people working zero hours can also be equally impoverished.
I have suggested eye hospitals have 'solution foodbanks' whereby anyone visiting for an appt could leave extra bottles of solutions/saline for patients in the above positions. For people who can't afford dinner they can't afford solutions now removed from NHS prescriptions. I reckon many of us would be willing to leave a bottle when we have appts, or, donate the prescription we can access with an appt.

Loopy-Lou wrote:I have suggested eye hospitals have 'solution foodbanks' whereby anyone visiting for an appt could leave extra bottles of solutions/saline for patients in the above positions. For people who can't afford dinner they can't afford solutions now removed from NHS prescriptions. I reckon many of us would be willing to leave a bottle when we have appts, or, donate the prescription we can access with an appt.

Great idea. I'll suggest it to my local hospital next time I'm there.

I suggested it to Moorfields, they failed to take up the idea