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What's important to you as a KC patient?

Posted: Fri 19 Jun 2015 10:10 am
by Anne Klepacz
It's not every day that the professionals ask for our opinions on KC treatment! Paul Tomlins, a corneal consultant who is revamping the KC service in his hospital in Cheltenham, would like to know what is important to people with KC to help him plan the new service. It doesn't matter where you live - he'd like responses from as many people with KC as possible. So please complete this short questionnaire and give your views on what you're hoping for when you see your KC doctor or optometrist.
https://www.surveymonkey.com/r/3BSJ5LM
Many thanks
Anne

Re: What's important to you as a KC patient?

Posted: Sat 04 Jul 2015 7:54 pm
by Lia Williams
I've just filled this in. It didn't take long to do and there is a section at the end to add any further comments.

LIa

Re: What's important to you as a KC patient?

Posted: Sun 05 Jul 2015 11:11 am
by CrippsCorner
Yup just pulled out my finger and filled this in. I don't sound very happy lol...

Re: What's important to you as a KC patient?

Posted: Tue 07 Jul 2015 1:39 pm
by Loopy-Lou
Same here, I let rip - lack of long term graft/re-graft stats, having to pay for saline/solutions with no provision for people on £70 a week JSA, how can they afford it, or those sanctioned on zero income. The limitations of Snellen, no recognition of variable visual impairment by registration or DWP, etc

Re: What's important to you as a KC patient?

Posted: Wed 08 Jul 2015 11:30 am
by Anne Klepacz
Many thanks to those who have filled in the survey. I'm told there have been around 20 replies so far. Given how much we all complain about the variability of access to all the various KC options across the UK, I thought it would be a lot more! Without hard evidence of how this variability affects KC patients, it's very hard to persuade the funding authorities to make improvements. So please take a couple of minutes to answer the questions. If Paul Tomlin gets enough replies, then he plans to publish the results which could lead to improvements not just in his own hospital, but throughout the UK. So whether you are very satisfied with the service you get, or wish things were better, do fill in the survey so that the variations will be clear and we all have a chance of 'gold standard' treatment!
Anne

Re: What's important to you as a KC patient?

Posted: Sat 11 Jul 2015 9:37 am
by Loopy-Lou
ditto Anne, please respond to this survey folks

Re: What's important to you as a KC patient?

Posted: Thu 20 Aug 2015 10:53 am
by Anne Klepacz
Just wanted to remind people of this before it disappears from view!

Re: What's important to you as a KC patient?

Posted: Sat 05 Sep 2015 9:59 am
by Anna Mason
As I don't come on here often I have only just caught up but have done the survey. Cheltenham is my nearer hospital but I go to Oxford because I cant get the right service at Gloucester or Cheltenham!