UK Keratoconus Self-Help and Support Association

Health Technology Wales has just issued revised guidance for the use of CXL. Their original report on the topic in 2018 stated that there was insufficient evidence(!) for CXL to be used by the NHS in Wales. The revised guidance now states -
"The evidence supports the routine adoption of corneal cross-linking (CXL) for children and adults with progressive keratoconus. Compared to standard care, CXL slows disease progression and may improve visual acuity. It may also reduce or delay the need for corneal transplantation.
Economic modelling suggests that CXL is cost effective on the basis of an assumed sustained clinical benefit for at least 14 years."
This now needs to translate into CXL being offered in Welsh hospitals (at the moment, only Singleton Hospital in Swansea does) and that is a decision for the Welsh government. Let's hope that follows swiftly!
You can read the full guidance (which includes a submission from the Keratoconus Group) at https://www.healthtechnoloty.wales/repo ... ss-linking

I have now had some feedback from my contact at HTW -
"Thank you so much for your contributions to this appraisal – our appraisal panel were particularly moved by the testimony provided from the patient group and have asked me to pass on their thanks. I think this is such a great example of how important this work of engagement with patients and groups such as yourselves is for health technology assessments."
So I in turn would like to thank all our members and forum users who have talked and posted about their KC experience and more recently their CXL experience. Without your voices, we couldn't have contributed to the review (it's just a shame that we weren't consulted back in 2018!)
You'll find our submission right at the end of the report, in Appendix 4.

The link should read https://www.healthtechnology.wales/reports-guidance/corneal-cross-linking/