munster wrote:But its probably more cost effective for the NHS to just do the corneal grafting instead. Its a sad state of affairs really
A graft is a last resort on is only to try and make the cornea surface shape more a more regular surface to correct vision when everything else has failed. The recovery time is 12 - 24 months but still with regular hospital visit for the rest of your life because at least half need to wear contact lenses post graft, the others usually glasses and a graft has an expected life expectancy of 10 - 15 years. Ifa graft fails, then it becomes harder to re-graft. There are a few of us that have grafts beyond this life expectancy and then there is the physiological cost knowing that someone had to loose a life so that someone would see again, in my case two people for which I am eternally grateful to them and their families for having the courage to help someone while coping with their own loss.
Overall grafts and the post operative care significantly add to the cost of KC management than being able to cope with contact lenses. Fortunately a vast majority of people with KC manage perfectly well with contact lenses.
The issue is the way healthcare in the UK is funded which means the optometrists and lens clinics trying to help us have to work to a budget that limits many of their options and the time they can spend on each appointment. In other countries this isn't an issue as they have to pay for their health care either directly or via health insurance schemes, the negative can be that the specialist clinics are spread around the region making it harder for people to travel to compared to many of us in the UK.
So a clinic may only have 2% of its patients having KC, but if they did away with the service to that more KC patients were treated in one area, how easy would it be for people to get to the hospital and access the services? What would this do to the waiting times?
Moorfields in London is a centre of expertise but as a result has huge waiting lists but having experienced them and other hospitals you can get the same level of service with lower waiting times and in some cases get almost a 1:1 service. Moorfileds I find isn't the easiest of hospitals to get to even if you are in London which I was for many years under their care.
My personal view is that with the latest guidance from NICE on CXL is that crosslinking should be given to all those that are newly diagnosed in an attempt to stabilise the condition and then if glasses fail to give suitable vision, fit soft lenses as the first choice and progressively work towards RGP lenses.
Unfortunately health care like lenses isn't a one solution fits all which is why it is important to share experiences and sites such as this and the others for KC are so important.