UK Keratoconus Self-Help and Support Association

Anyone interested in these issues;

1. The limitations of visual registration ie no provision for variable SVI before/after grafting, with lens difficulties where it's at opposite ends of the chart.
Maybe a route around this would be a simple letter on headed paper stating sighted with/SVI without/in these circumstances, which would really help with many things, having 'proof' of variable impairment where it affects significant periods of time or day (not just taking lenses out at night!).
Optoms could do this in 5 mins, but it would definitely help if the KC group/committee formally put this out there as a helpful strategy to bridge a gap.
Would the committee consider discussing this?

2. An additional discussion thread to the general discussion and other threads for members to specifically focus on social, emotional issues relating to KC? It could include swapping strategies for managing consultations for example.

3. The pandemic has further revealed the pre-existing inequality in the UK, with a high % of deaths being disabled people.
I worry about people in the lowest income bracket, zero hours, or basic rate Universal Credit £75 a week (less for younger people), and the cost of saline, cleaning, soaking solutions.
I did ask my eye hospital whether it would consider a 'solution bank' like a foodbank for solutions, but they were not interested.
I wonder if it would be worth doing a survey online and via the newsletter to ascertain how are people coping with the costs of products that were removed from NHS prescriptions?
Maybe it isn't a significant issue, but it would be good to know.

Also wondering how people with sight impairment have managed during the pandemic given SVI were left out of the clinical vulnerable list, it wasn't easy for people with supermarkets or getting delivery slots last year.

4. More generally, what are people's top concerns in relation to their KC, what helps, what hinders, desired changes?

Survey monkey is used by many charities to gather evidence on any range of topics, there's a cost but its very fundable.
Not RCT level of evidence but can be very useful in campaigning

Google Forms also manages surveys rather well and is 'free' on a personal account. The data submitted is collated in a Google Sheet and has some built-in charts that presents the data you collect.

If you are creating any type of online form, do make sure you don't collect any personal data so you don't fall foul of GDPR.

Good suggestion

If anyone has any interest in forming a group, could be a FB group with a view to specific focus such as eye service and policy campaigning, surveys, social issues, emotional support, then let me know, drop me a DM. Can never have enough groups in any area, they all compliment each other, especially if they focus on different issues.