Sourcing treatment

[euan]

Hello everyone,
I was told that I had kerataconus when I went to have LASIK treatment and the surgeon found that the topograpghy of my corneas was not regular. As I was on holiday in South Africa at the time I didn't follow up on how I should get treatment there.

I am a spectacle wearer and generally the vision I achieve with specs is OK apart from lots of glare at night time, although I've heard I could get better correction with RGP contact lenses. Contacts would also let me play sports more easily.

I'd appreciate some advice on the following questions:
1) Where should I start to try and get treatment? Do I need to be referred to the eye hospital or should I just find an opthalmic optician who specialises in fitting lenses for kerataconic patients?

2) Does the NHS provide much in the way of treatment for KC? Has anyone successfully claimed for KC treatment on private health insurance?

I'm based just south of Manchester, in Cheshire so would be really grateful to hear of any recommended treatment options/opticians nearby.

Thanks in advance for any advice,

All the best
Euan

[lou]

Hi Euan

Welcome to the site.

I lived in Marple, Cheshire and i now live in the High Peak ive had KC 11yrs now i was diagnosed by a optician and had to go to my GP to be refered to Manchester Royal Eye Hospital (KC very bad in both eyes optician unable to deal with).

My consultant is Arun Brahma at the MREH and i would recomend him, he does NHS and private consultations.

Good Luck let us know how you go on

luv

Emma xxx

[Christine Wallis]

Hi Euan,

To be honest I would go to my GP first and ask for a referral to a specialist eye unit/hospital - they usually give you a choice of where to go.(I'm in Wigan, and was given the choice of the Eye Unit at Wigan Infirmary, Manchester Eye Hospital and Moorfields)

I've nothing against going to an Opticians practice, especially if you hear of a specialist KC practitioner, but I think at your stage a hospital would be the best idea as they could talk through the options, also then you are in the 'system', which can help in the VERY unlikely event that you have problems out of hours.

I've just got some new NHS lenses they were about £100, I've always found the NHS to be great for my eyes, and have no complaints whatsoever.

(in my experience) RGP lenses are fabulous !

Good Luck !

Chris

[Michael P]

Hello Euan and welcome.

I totally agree with Christine. If you are unhappy with the advice or treatment from the hospital or simply want a second opinion you can always see someone privately.

One word of caution, do not treat your visits to the eye hospital as being a full eye check up because it is not. You still need periodic check ups to pick up any other potential problems such as diabetes, cataracts etc.

Good luck and let us know how you get on

[Andrew MacLean]

Euan

it is really good to be able to welcome you to the forum.

The NHS in the UK does indeed provide excellent treatment for NHS patients. In the Manchester area I think you are well served by the Manchester Eye Hospital.

Get a referral to the hospital from your GP. I think the Manchester Eye Hospital also ahs a contact lens clinic.

All the best

Andrew

[lou]

Correct Andrew the MREH has a great lens clinic and a A&E eye dept 24/7 (used many times by myself)

[GarethB]

Hi Euan,

Over the years we have had many in your situation where KC has been diagnosed when going for laser surgery and live very well with glasses and are sometimes reffered to as subclinical KC and never need more than a regular change of glasses just like any other glasses wearer.

If this is the case with you I would stay with the optician and if you get good vision with glasses stick with them. Should the condition progress then you can move to contact lenses. Although the lenses are subsidised and are £50 per eye, most of us in the UK have to pay for the lens solutions despite the fact the minister for health has publicly stated we are entitled to lenses on the NHS. For me that costs £750 per year in lens solutions. The non-KC peopel I know spend about £200 every other year for glasses.

The NHS provides loads round KC treatment but most is around using glasses or one of the many types of contact lens available. Surgery is left until absolutly necessary. Intacs sort of reinforce the cornea, but there are strict criterea and as yet not readily available on the NHS and privatly (although a few hospitals have the go ahead to trial this treatments) is Collegen Cross Linking also known as C3R. As a last resort there is transplant but less than 10% ever go that far.

Have a look at our Optometrists List to see if there is a KC friendly optom near you.

Manchester now have a local support group which will be worth attending, pm Mike Scott and also register your details with Anne Klepatz where you will then be put on the Manchester mailing list to be warned of local meetings, socials and also get regular news letters. We are more than a web based support group.

Hope this helps.

[mike scott]

Hi Euan

Welcome to the forum.

Well to be fair you have been given some absolutely amzing advice from everyone

Definately get a refferal from your GP, you may have to wait a little while but once you are in the system its a good place to be. The NHS has massive resources and very good KC management solutions available to you.

The main thing is never to panic as there is always an option.

MREH has an excellent lens dept and they are very experienced with KC, with very patient optoms who will happily answer your many questions, twice if you want them to.

As Gareth has mentioned we have just set up the Brand New Manchester KC support group and we would very much like you to come along. You will be able to meet other people with KC and discuss experiences with them as well as be "entertained" by guest proffessional speakers.

If you would like to attend you are more than welcome to bring along a partner/family members / friends / supporters or even your employer and i'm sure you would be able to contribute.
The support group is there for us all to be able to help each other with this weird condition .

Please feel free to PM with any questions you mioght have

Mike Scott

[JoeK]

GarethB

For me that costs £750 per year in lens solutions.

How many solutions do you use and how often? - it seems an excessive use of solutions to me. I use Boston Simplus all in one daily and a bottle costing around £7 usually lasts a couple of months at least. I also go through a bottle of wetting drops a month costing around £4 - still no where near your £62.50 a month???

[GarethB]

Joe,

I have an adverse reaction to other solutions I use, so get the Bodton Advance 3 month pack cleraner, conditioning solutions, there are protein remover, saline which I get through 2 bottles per week and the Bauch & Lomb is the only stuff I do not ahve a reaction too and then there are the lubricating eye drops too.

If I use just the basic Bauch & Lomb solutions my lens wear is sub 1 hour. With using all the extra stuff I get 12 hours regular.