UK Keratoconus Self-Help and Support Association

Hello all,

My name is Leigh Harris and work for Seeability, and its national information service http://www.lookupinfo.org, which deals with all aspects of Vision and eye care for people with a learning disability. I am currently updating our factsheets supporting people with learning disability and keratoconus with regards to Intacs, Phakic implants and specifically CXR. However at present I am struggling to find where this treatment is available on NHS, which is not part of a trial. I suspect when it is difficult for many individuals with a learning disability to freely consent to treatment, obtaining this treatment for many people with learning disabilties will be hard to obtain.

CXR is the treatment I anticipate will be the most benificial to the learning disability community in the future, as contact lenses are difficult to manage, and grafts have additional risks for some individuals re. eye rubbing etc.

Hope you can help

Leigh Harris

Leigh

So far as I know the idea is not "free" but "informed consent", and where a person is not able by reason of either minority or handicap to give "informed consent" another is able to do so, either as parent or guardian or as a court appointed guardian.

CXL is still undergoing NHS trials, but I expect that in the not-too-distant future it ought to be available in some, in not all, UK jurisdictions as a standard NHS treatment. The Intacs procedure is already widely available on the NHS.

All the best

Andrew

Leigh,

You may want to email me on this one. I am on the AOP Council and I may be able to help you via our legal team. It is interesting because I was contacted by an optom today about referrals of people with diminished mental capacity in care homes for the elderly. He wanted to know what happens when he wants to refer them for cataract surgery and they are not capable of making the decision.

Its a hard one, because the hospitals have to respect the human rights of the individual but what happens when they have no understanding at all of what the operations entail? Personally speaking, there was one learning difficulty patient where I was trying to get his very dense cataracts removed (he was totally blind) and the hospital refused because they said they had asked him and he had declined, saying he could see "alright". Of course, he couldn't see at all!! There was no way he had the slightest idea what the hospital was talking about. The operation could have made a huge difference to him, but as far as I know, he still has not had it done.

You are never going to get someone in this situation understanding the pros and cons of intacs and CXL. As Andrew says, they simply cannot process the risks over benefits. Its hard enough when you can understand the issues! Are you dealing with people who have power of attorney for financial issues for instance? If someone has a power of attorney in place, then they may be able to get the POA to asses the risks on their behalf.

If you want to talk about this further, my contact details are in my signature.

Hi Leigh,
Just to add that you're right - apart from some clinical trials at a few hospitals, CXL is not available on the NHS. Hopefully, once the trials are complete, that will change. Intacs have now been approved for use in the NHS and the number of hospitals offering Intacs is growing - however there would be an issue with eye rubbing.
Anne