Corneal Collagen Cross-linking on the NHS

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sushila
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Re: Corneal Collagen Cross-linking on the NHS

Postby sushila » Thu 15 Dec 2011 4:32 pm

Thanks you Chris and Anne for some very useful advise on how I should proceed.I will pursuit this further and let you know if I suceed with BUPA.

Many thanks and hope you all have an enjoyable Christmas!

sushila
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Keratoconus: No, I don't suffer from KC

Re: Corneal Collagen Cross-linking on the NHS

Postby sushila » Mon 16 Jan 2012 12:21 pm

Hi,
Below is the letter I have received from BUPA. I have spoken to them since that and they are still quoting NICE and saying that it is not aa adequate procedure.
Can anyone please help me as to what I should do next.
Many thanks,
Sushila
_0- 12 January 20g -- -- ---
Dear Mrs M.
We recently spoke on the phone about our denial of benefit for Master DM's collagen
cross linking for keratoconus.
The reason we are unable to cover this treatment is because the National Institute for Health and
Clinical Excellence guidelines state that based on current evidence, its safety and efficacy is
inadequate in both quantity and quality. Your consultant is welcome to speak to us about this matter.
I do hope this information has been of some help to you. If there is anything further that we can
assist you with, please contact one of our Member Services Advisers on the above local rate helpline
number.
Yours sincerely .~ Jennifer Horgan
Member Service Adviser

longhoc
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Re: Corneal Collagen Cross-linking on the NHS

Postby longhoc » Mon 16 Jan 2012 12:59 pm

Hi -- I've posted a reply to your other post ! Also, hope you don't mind but I've edited your post slightly just to remove your names to protect your identity.

martinamcg
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Re: Corneal Collagen Cross-linking on the NHS

Postby martinamcg » Sun 25 Jan 2015 5:38 pm

Hi,

I have only just found your site. I was wondering what are the latest updates regarding corneal collagen crosslinking. What hospitals do the procedure- under the nhs and privately.
Although I don't have keratoconus myself I am an optician and I feel I need to know a lot more about the procedure to beable to provide my patients with better help support and relevant advice.
I practice in the devon area so any hospitals or clinics close to here which do it would be ideal.

Thank you in advance

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Anne Klepacz
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Re: Corneal Collagen Cross-linking on the NHS

Postby Anne Klepacz » Mon 26 Jan 2015 11:53 am

Hello Martin and welcome,
The provision of crosslinking across the country is very patchy, especially on the NHS. And we're dependent on our members and professionals telling us where CXL is available, so it's not easy keeping up to date! Hospitals that have provided CXL on the NHS for several years now are Moorfields in London, St Paul's in Liverpool and the Royal Hallamshire in Sheffield. Bristol has also recently started doing it on the NHS and Manchester has also started (or is about to start) The Royal Victoria in East Grinstead and the hospital in Sunderland also provide CXL on the NHS. If any forum users can add to this list, we'd be very grateful. Of course, if CXL is recommended, the patient can be referred to a hospital that does provide CXL on the NHS, but the patient's 'home' area would have to agree to the funding.
Private provision is a bit more widespread. In the Devon area, the consultant at Plymouth has been offering CXL for quite a while. An application did go in to the SW regional health trust a couple of years ago for CXL to be funded in the SW. Unfortunately, this was just before those trusts were abolished and NHS England became responsible for agreeing funding and as far as I know, the application then fell into a black hole! Again, if anyone here knows of other locations in the SW, do let us know.
If you'd like to join our mailing list for newsletters and other updates as we get them, do e-mail your postal address to anne@keratoconus-group.org.uk
I hope that helps.
Anne

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Anne Klepacz
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Re: Corneal Collagen Cross-linking on the NHS

Postby Anne Klepacz » Tue 27 Jan 2015 11:43 am

Many thanks to the forum browser who e-mailed to say that her daughter had CXL on the NHS at Frimley Park Hospital in Surrey. So that's another one for the list.
Anne

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CrippsCorner
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Re: Corneal Collagen Cross-linking on the NHS

Postby CrippsCorner » Wed 28 Jan 2015 12:07 pm

I know this doesn't really help the list but I was told by my hospital there's not a single hospital in Essex that will provide CXL on the NHS unfortunately... I got mine done privately at BMI.

Anthony1992
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Re: Corneal Collagen Cross-linking on the NHS

Postby Anthony1992 » Tue 03 Feb 2015 4:17 pm

Sorry fo replying to an Old thread but ive had crosslinking done at the the royal in liverpool

AZ_80
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Re: Corneal Collagen Cross-linking on the NHS

Postby AZ_80 » Tue 25 Jul 2017 7:23 pm

Hi James
I am a new member. I have recently been diagnosed with Keratoconus. I wanted to get your thoughts on how did you get on with your research and what was the final outcome for you. Anything you can share here will be appreciated and useful.

Thanks
Ali

quote="jamesleicester"]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[/quote]


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