Corneal Collagen Cross-linking on the NHS

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Corneal Collagen Cross-linking on the NHS

Postby Tricia Miller » Wed Jul 28, 2010 8:29 am

Can anyone let me know which hospitals carry out collagen cross linking on the NHS please? I live in Buckinghamshire, so I suppose hospitals in London, Oxfordshire, surrounding areas etc. would be most convenient.

Any information you could give me regarding how you got your referral to that hospital, how long you had to wait for your first appointment, how long after that till the procedure was carried out etc. would also be appreciated.

Perhaps anyone who has recently had the cross-linking carried out could also give me an idea of recover time etc.

Many thanks
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Re: Corneal Collagen Cross-linking on the NHS

Postby Anne Klepacz » Thu Jul 29, 2010 9:09 am

Hello Tricia
There don't seem to be many hospitals doing crosslinking on the NHS at the moment. Moorfields Eye Hospital in London is one that has done some patients, initially as part of clinical trials but now also I think on an individual basis for some patients. I'm afraid I don't know whether the Oxford eye clinic is now offering it, or whether other London hospitals such as St Thomas's are offering it on the NHS. Maybe some of our members will have more information. And hopefully some of the people here who have had CXL done in the last year or so can tell you more about recovery times.
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Re: Corneal Collagen Cross-linking on the NHS

Postby Lisa Nixon » Fri Jul 30, 2010 11:52 am

The Royal Liverpool are starting CXL. Son and I are over on 13th Aug to discuss him having it done. Bit of a hike from Bucks though!
Only Robinson Crusoe got everything done by Friday!!
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Re: Corneal Collagen Cross-linking on the NHS

Postby jamesleicester » Tue Sep 14, 2010 8:02 pm

Hi all,

If it's true that CXL is available at some NHS hospitals (?) this is excellent news because Moorfields quoted me £3000 to £4000 today for a combination of CXL and LAISIK (aparently you usually need both).

I'll contact the said hospital in Liverpool to see if they can help me. As my KC is in it's early to mid stages it would surely be foolish to not have this procedure done, even if I do have to pay £3000 to £4000.

Finally, does anyone know if the price Moorfields has quoted is reasonable? Or is it rather high? And can anyone suggest any more reliable and safe private clinics that I could contact please?

Any replies are really appreciated. I'd like CXL doing ASAP whilst I'm still in the early stages of KC.

James.
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Re: Corneal Collagen Cross-linking on the NHS

Postby BurnTheAction » Wed Sep 15, 2010 10:56 am

James,

I had cxl on my left eye carried out on the NHS at Moorfields St George in Tooting under Dr Rostrom(who has since retired) in May. My only cost was the prescription for post op steroids etc

I got myself referred to Moorfields after losing faith in my local hospital. Dr Rostrom suggested CXL without even having to ask at my first appointment. 3 month wait for procedure after that.

Took 3-4 months before my follow up appointment after that, was a lot more painful in first few days than i expected (first 24-48 hours was hell)

Have not been happy with my post op treatment though, only person i have seen is a retina specialist with no knowledge of cxl and the contact lens clinic.

Back to wearing lenses for half the day now (also had a proud nebula scar removed but not sure they have done it properly), seen no visual improvement but hopefully it keeps the KC from progressing!

All the best with your cxl search!

James
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Re: Corneal Collagen Cross-linking on the NHS

Postby jamesleicester » Wed Sep 15, 2010 11:24 am

Hi James,

Many thanks for your post. Interesting reading and I do hope someone takes ownership of your post care soon, and more seriously!

You said your only cost was for prescription steroids so I guess you had CXL on the NHS, correct? Who got you the treatment on the NHS? Your GP or local hospital contact lens clinic?

I'm not sure why you saw a retina specialist when you've having corneal treatment. Typical NHS I suppose (am I right to sterotype?) and you must feel quite frustrated not to be seeing someone more relevant.

You say that you're back to wearing lenses for hald the day now. Are you using RGP lenses or another type? I'm waiting for a Kerasoft lens to arrive through the letter box this week and was very pleased with the initial result when I tried it on at the Queens Medical Centre (QMC) in Nottingham last Friday.

Referring back to me initial post...

Moorfield quoted me for both eyes (£3000-£4000), which is why the cost was so high. This price included LAISIK, which I don't have to have. If the Kerasoft lens proves to correct my vision well (as it did at the QMC) I'll opt out of LAISIK and see what my vision is like after CXL with a Kerasoft lens. I could always have LAISIK done at a later date. This seems logical to me, does it everyone else? Surely the less invasive procedures you have done the better?
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Re: Corneal Collagen Cross-linking on the NHS

Postby jamesleicester » Wed Feb 23, 2011 9:32 pm

Hi all,

I've got quite a lot to report since my last post as I've been a very busy little bee due to my KC progressing quicker than ever over the past year!!!

I'm now wearing a toric soft lens prescribed by an excellent private contact lens centre in Nottingham city centre (yes, soft toric and it's great!). I'm achieving almost 20/20 in my bad eye (right eye has no visual sign of KC).

As I've said in previous posts, the Queen's Medical Centre (QMC) tried to fit an RGP lens in 2007 and Kerasoft lens in 2010. I found them both uncomfortable and switched to the toric soft lens in December 2010. The private contact lens clinic did say that they were surprised the QMC hadn't started with a soft lens. I also have to wonder why because it's obviously so comfortable and produces very acceptable vision!!! All eyes are different though so I shouldn't point fingers...for now.

So, onto my Collagen Cross Linking (CXL) consideration as mentioned on in previous posts, which as of today, 23/02/11 are no longer a consideration. I've decided having it done, it's just a case of where and by who...

I made an appointment at the QMC to discuss CXL with them. They don't do it and didn't seem to know much about it but did, upon my request (because I knew more about the requirements of CXL than them), measure my cornea thickness so that I could qualify myself (yes, that's right - qualify myself for a sight saving procedure) for CXL. Whilst having my cornea measured a nurse at the QMC said that the NHS Royal Hallamshire in Sheffield is doing CXL on the NHS.

In light of the above discovery, and after asking several people how best to go about seeing the Royal Hallamshire, I made an appointment with my GP in November 2010 for a referral and at the same time he sent a letter (yes letter, not email (it was only 2010!)) to Sheffield.

January came and no appointment date for Sheffield had appeared so I called my GP to check that the referral had taken place. He said it had so I called Sheffield to ask if they had received the referral and they said they hadn't (2 months later). I called my GP back and gave him a fax number for Sheffield so that the letter could be sent straight away. They said they'd do it and after checking with them a day later they said they had faxed it. Of course I followed this up with a call to Sheffield who confirmed receipt of the referral.

You might think I'm a bit pushy but one thing I've learnt about the NHS (through past family experiences) is that you have to (excuse the expression) wipe its backside all the time.

I saw the Royal Hallamshire last month (Jan 2011). I took topography readings from 2007 and October 2010. Another reading was taken whilst at the Royal Hallamshire. Between 2007 and last month the doctor said there was no significant sign of progression so he needed to see me in 6 months time to check for progression and refused to book me for CXL. Why on earth they couldn't have said they'd need a 6 month gap reading before I went is beyond me. I'd only wasted 1 day of work holiday, spend £30 in fuel, got out of bed before 6am for an 8:20am appointment and spent stupid money on car parking charges at Sheffield.

Here's what makes me really angry....

Why should I wait another damn 6 months, and then probably another 2-3 months from the point of treatment being agreed until the actual treatment date? By 6-9 months my KC WILL have got worse (because it's progressing the most NOW) and I'll not be able to reverse the effects of KC. Grrr!!! Why the hell does the NHS need to see the disease get worse? Now is the time to act, not in 6+ months time.

The doctor says the reason he can't treat me before seeing if my KC is progressing is due to NHS protocol. All he needs to do is compare the flat cornea on my right eye with the raised cornea on my left eye. Simple!

Anyway, after a few days of practically begging the Royal Hallamshire to give me CXL earlier than 6 months they refused and I said I'd look into private options. I've given up on the NHS treating my eye. Since 2007 I'm very sorry (and angry) to say they they've not been able to help me - just cause me inconvenience and expense.

So, onto private options...

After chatting to another user on here I learnt about a clinic called Accuvision. They have a clinic in Solihull, London and Leeds. I saw Accuvision in Solihull yesterday for consultation with their T-CAT laser and CXL procedure in mind. They are 1 in 5 clinics in the world that do T-CAT laser combined with CXL. If you'd like more information about T-CAT laser visit the Accuvision website.

They really do make you feel that they want the best for you. I can image the care you'd receive would be first class. I didn't like the busy and stark waiting room but I guess it was busy because they are probably good at what they do!

They didn't recommend T-CAT laser because I am achieving almost 20/20 in my corrected poor eye (toric soft lens). The consultant said they would not want to laser cells off my cornea when I've got good corrected vision. There's no point in entering unnecessary risk and I agreed. I appreciated the fact that they didn't recommend it just to make more money.

What I'm finding hard to swallow is the £2500 price tag for JUST CXL. When I spoke to them on the phone before going they said that T-CAT and CXL would cost £2500-£3000 so I was expecting CXL on it's own to be a lot less than £2500.

Since yesterday I've phoned three more clinics in Harley Street, London who only want between £1300 to £1500 per eye for CXL. I've seen this price range on this website from other user's posts so was reassured to hear it for myself from the clinics.

One London clinic I'm very interested in is a clinic called Advanced Vision Care (AVC). I've read quite a few reviews and all say the care and expertise are excellent. They include a night in a 4 star hotel pre or post op within the price for the patient and his/her partner. This would be very useful for the follow-up appointment the next day because I'd not have to travel between London and Nottingham!

If anyone can shed any helpful light on good and reasonably priced private clinics doing CXL I'd really appreciate it.

I hope my update helps people in a similar position.

Finally, I'd just like to suggest that, if the NHS wants anyone needing CXL with progressive KC to wait half a year plus before agreeing to do CXL, that you seriously consider private treatment to hopefully prevent your sight from getting worse. You'd spend £1300-£1500 on a second hand car so why quibble over spending it on your sight!!!

Here's the sensible bit...

I've done a hell of a lot of research into treatment options over the past few months. Anyone with the same get-up-and-go attitude as me (realising the need to act now) should do the same. Please don't rely on my experiences alone without comparing the options I've talked about with your own unique/bespoke needs. Everyone's eyes are different and precious so treat them that way.

Your thoughts and comments on my update are most welcome.
James
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Re: Corneal Collagen Cross-linking on the NHS

Postby sushila » Thu Dec 01, 2011 7:04 pm

Hi,
I am a new new member and am after some information on collagen cross linking available under NHS at Moorfields.My son(19) has Keratoconus in both eyes and the consultant at Moorfield has recommended htis procedure.They have to apply for NHS funding with they already have.However I have heard that in fact Moorfield don't currently have the equipment for this.They are just collating a list of suitable candidates so that they can get funding approved.(I sincerly hope this is not the case because I know that the private wing has got this facility ).
Would live to hear from someone who has had this done at Moorfield under NHS.
Also has anyone managed to claim for this under BUPA. I am interested to find out .I have got BUPA from work which covers my son but they say they don't cover this ,but they said they would review individual cases. Would love to hear from anyone who has had this done privately.I have been quoted £2000 for one eye.
By the way,thanks everyone for this site . It really is very useful! It has provided me with so much information about the condition and it is good to hear about other peoples experiences. Must admit I am very worried because the more time it takes the worse the condition gets.Really frustrated that this is not readily available since this procedure could potentially save someones eyesight.
Wish everyone who has KC well and hope you get the approprite treatment that you need asap!!
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Re: Corneal Collagen Cross-linking on the NHS

Postby Anne Klepacz » Fri Dec 02, 2011 11:10 am

Hello Sushila and welcome to the forum,
At the last London members' meeting we heard from one of the consultants at Moorfields that the hospital is now using Individual Funding Requests to get approval for doing CXL on the NHS - that involves making a case for the individual patient to the relevant PCT. I don't know how long it takes for the funding to come through - hopefully not too long. (Their last attempt to get blanket approval to provide CXL on the NHS was unsuccessful, which is why they're now going down this route).
As for funding through BUPA, if you look at a thread called 'CXL paid for WPA medical insurance' a few pages back on this forum, you'll see that one member did report in Octoberthat he'd been successful with BUPA (though after quite a fight!) So it might be worth trying that route while you're waiting for the NHS funding to come through.
All the best
Anne
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Re: Corneal Collagen Cross-linking on the NHS

Postby longhoc » Fri Dec 02, 2011 5:43 pm

Hi there Sushila

Yes, as Anne rightly says, it's possible to get your PMI (Private Medical Insurance/Insurer) to cover crosslinking -- it's not completely unheard of. However, neither is it straightforward. This is because it currently sits in the uncomfortable half-way-house between fully approved as a treatment for Keratoconus and still in its trial phase. To cut a long story short (and to oversimplify a quite complex situation) it's in the late stages of trials, is becoming effectively a defacto option for many ophthalmologists but as yet because the trials haven't published their final conclusions, it can't be said to have an unequivocal approval. It is that last point which gives the PMIs some wriggle-room to refuse a claim. But it is the other points preceding it which gives one the potential to insist a claim is accepted by a PMI.

As this subject may be relevant to others, I'll repeat my "hints and tips" on how to increase your chances of being able to make a successful claim for crosslinking from a PMI.

1) You must have a PMI policy which offers medical treatment. Check your policy document -- a "cash plan" type of policy might well pay a benefit in the event of you having the crosslinking, but it certainly won't cover the cost of the procedure itself. Check your policy document to see what type of policy you have.

2) Make sure that you have some documentation confirming your diagnosis and the need to see a specialist eye professional (usually an ophthalmologist for crosslinking). This can come from either the eye clinic you attend to manage your Keratoconus or your GP in Primary Care. On no account should you contact a consultant directly or do anything which could be seen as a self-referral.

3) Again, check your policy document for the PMI's requirements as to which consultants you should use in respect of the cover offered. In some cases -- knowing the general trend for the PMI industry I'd have to say now the vast majority of providers will require this -- you should only get a referral to a consultant ophthalmologist from the PMI's "panel" i.e. pre-approved specialists. Some policies let you see who you like, but if that's not how your policy is worded, then do not violate this criteria as it will make things trickier. I could write a shed-load about how I dislike the creeping tendency to make this clause a standard term of the PMI's products but for the sake of brevity and trying to stay relevant to the point, I won't
:D

4) At this stage, I should say that subject to 1) ~ 3) above being followed, then your PMI policy should definitely cover the cost of your consultation. So at least you can probably save a bit of time vis-a-vis the waiting list on the NHS. Now, though, the fun starts...

5) When you see your consultant, you must establish without any ambiguity that the following are applicable to your circumstances:

a) That your diagnosis is Keratoconus
b) That your Keratoconus is progressing
c) That the consultant's best advice is that crosslinking is indicated for you
d) That the crosslinking would be performed with curative intent
e) That the ophthalmologist considers that crosslinking is the customary and expected treatment based on current practice.

The precise wording in the italics above is so important -- confirmation from the consultant is critical to being able to get any claim accepted -- I'd recommend that you write it down and ask her/him to confirm that would be their judgement. If they are happy to confirm all this in writing e.g. send you a letter stating the above then so much the better.

6) If this plays out as I've described, then submit your claim for crosslinking to the PMI.

7) There's only two possible outcomes -- they either accept the claim or they don't. If they don't then do by all means post here and I'll do my best to help. No guarantees, but as others have said in this thread, the NHS situation is, a-hem, trying to be polite, somewhat patchy.

Sorry, have covered a lot of ground there so do please say if you're not sure of anything I've written.

Good luck,

Chris
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