First Consultation Today

[gill501]

Today I had my first proper consultation with the specialist and a corneal map done. This was further to my hospital visit 6 weeks ago where they were almost certain I had Keratonconus in my right eye. Well today it's confirmed I have it quite established in my right eye and signs of it just starting in my left eye. The consultant tells me that the thickness of the cornea in the right should be about 550 and mine is 430? My vision in my left eye at the moment is 100% but only 40-50% in my right.
I have been referred back to opticians to start fitting me for a contact lens but the consultant has recommended that I seriously think about Cornea Collegen Crosslinking. He said it's not available on the NHS, only privately, so from the point where he said that I think I kind of switched off a little as I'm not in a position to pay a lot of money for anything right now He gave me a leaflet to read and his telephone number for more information if I need it.
Can anyone give me an idea of how much this will cost and whether it is per eye? Also how long does this treatment last? He tells me that it will almost definately stop the progression of the disease ... but for how long, would I need to get some more cross linking done in say 3 or 5 years time?
Thanks for any info you can share while I ponder this big decision.

[Lizb]

Hi Gill501

Crosslinking (CXL) was available as trials in some places of the UK on the NHS, I know that St Pauls Eye Unit at Royal Liverpool Hospital were undertaking CXL, however i dont know the current situation is there though nor do i know whereabouts you are based. May be worth a phone call there to ask if you are local(ish) - I travel from Preston to Liverpool for my consults rather than going to my local hospital which doesnt have much of a clue about KC.

I had CXL privately about 2 years ago, at Centre For Sight, on my left eye. It cost me about £1000 all in. At the moment no-one knows the long term affects of CXL, it is a fairly recent development for KC. I dont regret having CXL done, as who knows what would have happened in the future. Something to think about is your current age - I believe that the cornea naturally thickens as you get older (am sure that someone who knows eyes professionally will confirm this and the age) which has the same affect as CXL. Currently CXL (and Intacs - see below) are only done on corneas over a certain thickness, so that is another consideration.

Some other information
Intacs are two pieces of plastic that are inserted in the eye that assists in smoothing the shape of the cornea which hopefully allows better/easier fitting of conact lenses

Both CXL and Intacs are only procedures that may assist in slowing or reshaping the cornea to allow better fit for contact lenses (occasionally allowing vision to be obtained in glasses). Neither procedure will reverse the affects of KC, but neither discount other procedures in future if required (for example grafts if your corneas deteriorate to that degree).

[gill501]

Thanks for the information Liz, I really appreciate it. I am in the West Coast of Scotland and the Consultant I saw yesterday at the NHS hospital was Mr Srinivasan who said I should definately consider CXL and that he did it privately himself, he gave me a leaflet and and his secretarys phone number.(Part of me felt like I was getting a sales presentation from him regarding CXL!) I will call in a few days to find out the cost but if I'm to go by your information and other I have found out on the internet I could be looking at between £1000 and £3000. Even at the minimum amount I would not be able to afford that. Right now I feel as if im stuck between a pillar and a post, being told the best treatment is not available on the NHS or taking the other treatment (contact lens) which could end up with me needing a corneal transplant in the future, which is a very scary prospect!

[Anne Klepacz]

These decisions are never easy. But do bear in mind that what crosslinking is designed to do is to stop the progression not to improve the sight (although some people do get an improvement, and there are options of combining CXL with other procedures which are even more expensive!) so there's no guarantee that you wouldn't still need to wear a contact lens after CXL. Hopefully contact lenses will give you a significant improvement in vision while you think about options.
All the best
Anne

[Lynn White]

Hi Gill

You may have felt that the consultant was being very "salesy" but to be fair, they are between a rock and a hard place. Cross linking (CXL) is the only treatment that shows any promise whatsoever of halting progression but is not available widely on the NHS. It was first started nearly 14 years ago in Dresden and there is a study with follow ups that has been ongoing for over 8 years showing that it does have a beneficial effect re stopping progression. In many parts of the world, CXL is now the first port of call re treatment and is combined with many other forms of surgery to try and improve corneal shape. The fact that it is not mainstream NHS treatment does not mean that it is not valid. It merely means the NHS is being slow on accepting this treatment. NICE, the body charged with "approving" treatments says it requires more R&D - very much like various cancer treatments etc. Therefore consultants who believe in it as a therapy can only offer it privately.

My experience as an optometrist following up cross linked patients is that is certainly does appear to stop progression and indeed does improve corneal shape, albeit over a period of years. Every year that goes past, I move slowly from cautious optimism to feeling that this procedure is actually working for the majority of people.

One way of tackling this problem (apart from the cost issue of course!) is to have thorough scans of your eyes (eg Pentacam) which show the corneal shape and also thickness of your cornea, and to repeat these annually. If your corneas do show signs of getting worse, then CXL is definitely worth saving up for. If there is no change, then continue monitoring every year.

Lynn

[Anne Klepacz]

Thanks for putting things in perspective, Lynn.
But I'd interpreted the NICE guidelines www.nice.org.uk/IPG320 slightly differently. I thought they were saying that consultants COULD apply to their PCT for NHS funding of the procedure. Is that wrong? Admittedly, in the current climate of NHS budgets being squeezed, the chances of PCTs agreeing to fund CXL are probably pretty low - I know the consultants who spoke at our Glasgow conference a couple of years ago were very pessimistic. And the NICE guidelines don't apply to Scotland anyway, which complicates things even more!
Anne

[Lynn White]

Hi Anne,

OK... here is the guidance from the NICE website which I still feel is not exactly positive. It is technically possible but they are hedging it around with a lot of caution which implies it is not accepted as mainstream. I think the reality will be that some progressive PCTs/hospitals will do it while others will definitely not. To make it generally accepted, it would require a strong recommendation from NICE to say all keratoconics should be allowed the option of CXL.

As it stands, these guidelines do not cater for those wishing to have it done prophylatically or if they are not currently progressing or if corneal pachymetry is below 400 nm.

1 Guidance

1.1 Current evidence on the safety and efficacy of photochemical corneal collagen cross-linkage using riboflavin and ultraviolet A (UVA) for keratoconus is inadequate in quantity and quality. Therefore this procedure should only be used with special arrangements for clinical governance, consent and audit or research.

1.2 Clinicians wishing to undertake photochemical corneal collagen cross-linkage using riboflavin and UVA for keratoconus should take the following actions.

Inform the clinical governance leads in their Trusts.

Ensure that patients and their parents/carers understand the uncertainty about the procedure's safety and efficacy, including the possibility of side effects in the long term, and that the procedure may need to be repeated, and provide them with clear information. In addition, the use of NICE's information for patients ('Understanding NICE guidance') is recommended (available from www.nice.org.uk/guidance/IPG320/PublicInfo).

Audit and review clinical outcomes of all patients having photochemical corneal collagen cross-linkage using riboflavin and UVA for keratoconus (see section 3.1).

1.3 The procedure should only be carried out on patients with progressive keratoconus and adequate corneal thickness.

1.4 Photochemical corneal collagen cross-linkage using riboflavin and UVA for keratoconus should only be carried out by ophthalmologists with expertise in the management of corneal disease and specific training in the use of ultraviolet light.

1.5 NICE encourages further research into photochemical corneal collagen cross-linkage using riboflavin and UVA for keratoconus. Research should take the form of studies that allow comparison with the natural history of the disease, and should define patient selection criteria based on estimated risk of disease progression. Outcomes should include measurement of visual acuity, topographic assessment of corneal stability, prevention of progression to transplant and long-term safety. NICE may review the procedure on publication of further evidence.

http://egap.evidence.nhs.uk/IPG320

Lynn

[longhoc]

Dear Everyone

For those who for whatever reason (choice, or , necessity) may want to jump through the hoops of claiming for C3R on their medical insurance policy, I've asked a colleague who deals with generial insurance issues for some pointers on this matter. From what she told me, I've got enough material for a seperate post when I've more time, but until then, it may be useful to review the "raw material" I got pointed to -- the Financial Ombudsman Service's guidance to the industry on this topic.

It's a right treasure trove covering factors you might run into such as "approved" consultants, "experimental" procedures etc.

Firstly, these are real case studies of complaints and how they were resolved:

http://www.financial-ombudsman.org.uk/p ... rance.html

Then there's some general information about what the Ombudsman looks at when determining whether to back the insurer or the insured:

http://www.financial-ombudsman.org.uk/p ... gether.htm

Like the NICE statement, there's a lot of umm-ing and ahh-ing and general statements. It's one of those subjects where the specific individual situation needs to be looked at. But any insurer simply throwing out a claim on the "considered to be ‘experimental’ " grounds is definitely open to a challenge. This is because 'experimental' isn't clear-cut in this context.

If you're in the position of making a claim for C3R, if nothing else read "77/07
private medical insurer refuses to authorise the ongoing use of a drug it considers to be ‘experimental’" in the first link above -- there's a pretty clear read-across to C3R even if the disease process involved is different.

As I say, will disect more fully and come up with some specific "how to's" for making a C3R claim when I've got chance.

Best wishes

Chris