Newly diagnosed.
Moderators: Anne Klepacz, John Smith, Sweet
Newly diagnosed.
Hi, I was diagnosed yesterday with KC. Could someone explain to me the difference between KC and astigmatism. I noticed a rapid change in my eyesight over a six month period so went to the opticians who sent me for tests. The consultant confirmed keratoconus and has advised CXL. I have private medical insurance but they are saying they dont cover for anything to do with astigmatism. Has anyone else had this experience? Also, for those that have had CXL what was your experience. Is this also carried out by the NHS ?
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Anne Klepacz
- Committee
- Posts: 2293
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Newly diagnosed.
Hi Debbie and welcome to the forum,
Lots of people have regular astigmatism which can usually be corrected with glasses. KC involves irregular astigmatism which is much more difficult to correct, so most of us wear contact lenses especially designed for KC. KC also involves the cornea becoming thinner and so the shape of the eye becomes irregular. The idea of CXL is to stop that progressing. There are great long threads on this forum about CXL and private insurance - I'll leave our expert on this (longhoc) to tell you more. There are just a few hospitals which offer it on the NHS. The ones I know of are Sheffield, Liverpool and Moorfields in London. Other members might know of other places.
If you'd like our information booklet on KC, just e-mail me your postal address and I'll send you one anne@keratoconus-group.org.uk
Anne
Lots of people have regular astigmatism which can usually be corrected with glasses. KC involves irregular astigmatism which is much more difficult to correct, so most of us wear contact lenses especially designed for KC. KC also involves the cornea becoming thinner and so the shape of the eye becomes irregular. The idea of CXL is to stop that progressing. There are great long threads on this forum about CXL and private insurance - I'll leave our expert on this (longhoc) to tell you more. There are just a few hospitals which offer it on the NHS. The ones I know of are Sheffield, Liverpool and Moorfields in London. Other members might know of other places.
If you'd like our information booklet on KC, just e-mail me your postal address and I'll send you one anne@keratoconus-group.org.uk
Anne
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gr1ffiths
- Contributor
- Posts: 22
- Joined: Thu 02 Dec 2010 3:13 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: Newly diagnosed.
Worth having a look at the link below and appealing the private insurers decision.. I had the same trouble with BUPA refusing to pay but after a long wait and a lot of help (thank you Longhoc) I am close to a resolution to this problem. Fingers crossed!!
http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=6632
http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=6632
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longhoc
- Moderator
- Posts: 349
- Joined: Sun 26 Dec 2010 11:13 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Newly diagnosed.
Hi, yes, thanks all, I do have some experience on the subject of Private Medical Insurance (PMI) and Crosslinking. Having worked in the industry for longer than I like to admit, I know a thing or two about the legal side of insurance contracts.
Debbie, a big welcome as everyone has said. In essence, the process for dealing with a PMI which has rejected a claim for Crosslinking is the same for all policy types and all PMI providers. Here's a mini-guide:
1) First off, make sure that you have a consultation with an ophthalmologist who is on the PMI's "approved clinicians" list (the name which the PMIs give to the specialists who they are okay to take direct billing from). While it is in theory possible to use any consultant you like, in practice their fees will be higher and you'll encounter more hassles trying to do the cost recovery than if you use the pre-approved consultants. The PMIs won't actually force you to use the consultants on their list but it is made more difficult if you don't... If in doubt, call the PMI and ask for an ophthalmologist in your area or give them the name of the person you've been referred to if you've already had your consultation.
2) Get your diagnosis (Keratoconus) confirmed by the consultant.
3) If your ophthalmologist advises that Crosslinking is indicated, ask them to confirm this in writing (it is useful if they can go into a little more details than just the straightforward "this procedure is indicated" statement and augment it with the clinical need which underpins it e.g. "progressive bilateral Keratoconus LE>RE, nnn-micron loss of corneal thickness observed by Pentacam topologiy at 12 month interval" or something like that -- every patient will be slightly different so that is only an example but the point is to document what is driving the indication). Getting copies of your historic topologies is an extra bonus if you can do that too.
4) Ask your consultant to confirm that in their professional opinion, the procedure (Crosslinking) is Customary and Expected (clinicians such as ophthalmologists and optometrists are usually understandably very wary of having a patient tell them to write this- or that- statement but if you explain why this is necessary i.e. because your insurer is challenging the claim then most are happy to help in their own way -- if they can stick to the wording I've just laid out though so much the better as it has a specific meaning in the language of a PMI policy).
5) Make the claim to your PMI provider. Do not use the telephone "claims hotline" or similar; put it in writing by sending the documentation from the clinician as described in steps 2), 3) and 4) above along with a covering letter -- don't forget to quote your policy number. Keep copies of everything and if you don't mind a bit of hassle, I always recommend using Special Delivery. PMIs can get awfully prone to losing paperwork sometimes. Coincidentally, this seems to happen more frequently when matters are in dispute... And the quality of "advice" you typically get from a PMI's claims advice line can be, unfortunately, pretty woeful at times. The nonsense you seemingly got told from what you put in your original post is a case in point. Keratoconus is the disease process, which can cause astigmatism. Astigmatism is not the disease or a drug/treatment/procedure so can't be the cause of denying a claim !
6) Await the PMI's claims decision.
7) If the claim is then accepted, great, you can have your treatment.
8 ) If not, then request the PMI to advise which of your policy's Terms and Conditions they are using to deny cover.
9) The answer to 8 ) above is usually under the "experimental drugs or treatments" clause(s). At this point, it's probably worth posting here again just to advise me exactly what the PMI is saying about your claim.
10) Assuming it is the "experimental drugs or treatments" exclusion, write to the PMI advising that your clinician has stated that the treatment is Customary and Expected and not experimental. Also advise them that the procedure is available in certain NHS Hospital Trusts but subject to budgetary constraints and a waiting list (which is exactly the reason you took out a PMI policy in the first place...) Anne has detailed some of the NHS eye units where Crosslinking is available in her post above. Ask the PMI to reconsider the claim but advise if they are still minded to reject it, they must then send you a Letter of Deadlock (again, use this specific wording)
11) You will then need to make a complaint to the Financial Ombudsman Service (FOS). This isn't that difficult, I have a reasonably tried-and-tested template ready for this purpose which merely needs a little customisation for each claim. If you like, I can submit this claim on your behalf for you.
12) Modesty put to one side for a moment, I do have a 100% success rate (thus far!) with FOS rulings in matters of PMIs denying claims for Crosslinking. However, the PMIs don't always roll over totally and can still throw some other procedural techniques such as contesting the consultant's fee structure and denying vicarious liability if something goes wrong during the procedure. You might still be left with a few hundred pounds shortfall. But that's a lot better, usually, than having to pay the full £1,500 - £2,500 cost in its entirety yourself. Does no harm at all, to me, to challenge the PMIs if for no other reason than, in my view, the reasons I've come across for rejecting claims for Crosslinking are not valid. And I have this weird notion that companies should not renege on their contracts or fail to live up to the promises they made in their marketing material just because it is hitting their bottom line.
Let me know if you need any more information at all. And sorry that you've got this added aggravation. No-one with our condition has it easy. The least we can hope for is that the products we've paid for do what we expected them to when we needed them to help us out. It's a double blow somehow that firstly you've got a condition which needs a stress-inducing decision to go for an invasive procedure for and then you've also got to battle against a system that's doing it's best to get in your way. We try to do our best here to assist anyone in need, hope that's of some use !
Best wishes
Chris
Debbie, a big welcome as everyone has said. In essence, the process for dealing with a PMI which has rejected a claim for Crosslinking is the same for all policy types and all PMI providers. Here's a mini-guide:
1) First off, make sure that you have a consultation with an ophthalmologist who is on the PMI's "approved clinicians" list (the name which the PMIs give to the specialists who they are okay to take direct billing from). While it is in theory possible to use any consultant you like, in practice their fees will be higher and you'll encounter more hassles trying to do the cost recovery than if you use the pre-approved consultants. The PMIs won't actually force you to use the consultants on their list but it is made more difficult if you don't... If in doubt, call the PMI and ask for an ophthalmologist in your area or give them the name of the person you've been referred to if you've already had your consultation.
2) Get your diagnosis (Keratoconus) confirmed by the consultant.
3) If your ophthalmologist advises that Crosslinking is indicated, ask them to confirm this in writing (it is useful if they can go into a little more details than just the straightforward "this procedure is indicated" statement and augment it with the clinical need which underpins it e.g. "progressive bilateral Keratoconus LE>RE, nnn-micron loss of corneal thickness observed by Pentacam topologiy at 12 month interval" or something like that -- every patient will be slightly different so that is only an example but the point is to document what is driving the indication). Getting copies of your historic topologies is an extra bonus if you can do that too.
4) Ask your consultant to confirm that in their professional opinion, the procedure (Crosslinking) is Customary and Expected (clinicians such as ophthalmologists and optometrists are usually understandably very wary of having a patient tell them to write this- or that- statement but if you explain why this is necessary i.e. because your insurer is challenging the claim then most are happy to help in their own way -- if they can stick to the wording I've just laid out though so much the better as it has a specific meaning in the language of a PMI policy).
5) Make the claim to your PMI provider. Do not use the telephone "claims hotline" or similar; put it in writing by sending the documentation from the clinician as described in steps 2), 3) and 4) above along with a covering letter -- don't forget to quote your policy number. Keep copies of everything and if you don't mind a bit of hassle, I always recommend using Special Delivery. PMIs can get awfully prone to losing paperwork sometimes. Coincidentally, this seems to happen more frequently when matters are in dispute... And the quality of "advice" you typically get from a PMI's claims advice line can be, unfortunately, pretty woeful at times. The nonsense you seemingly got told from what you put in your original post is a case in point. Keratoconus is the disease process, which can cause astigmatism. Astigmatism is not the disease or a drug/treatment/procedure so can't be the cause of denying a claim !
6) Await the PMI's claims decision.
7) If the claim is then accepted, great, you can have your treatment.
8 ) If not, then request the PMI to advise which of your policy's Terms and Conditions they are using to deny cover.
9) The answer to 8 ) above is usually under the "experimental drugs or treatments" clause(s). At this point, it's probably worth posting here again just to advise me exactly what the PMI is saying about your claim.
10) Assuming it is the "experimental drugs or treatments" exclusion, write to the PMI advising that your clinician has stated that the treatment is Customary and Expected and not experimental. Also advise them that the procedure is available in certain NHS Hospital Trusts but subject to budgetary constraints and a waiting list (which is exactly the reason you took out a PMI policy in the first place...) Anne has detailed some of the NHS eye units where Crosslinking is available in her post above. Ask the PMI to reconsider the claim but advise if they are still minded to reject it, they must then send you a Letter of Deadlock (again, use this specific wording)
11) You will then need to make a complaint to the Financial Ombudsman Service (FOS). This isn't that difficult, I have a reasonably tried-and-tested template ready for this purpose which merely needs a little customisation for each claim. If you like, I can submit this claim on your behalf for you.
12) Modesty put to one side for a moment, I do have a 100% success rate (thus far!) with FOS rulings in matters of PMIs denying claims for Crosslinking. However, the PMIs don't always roll over totally and can still throw some other procedural techniques such as contesting the consultant's fee structure and denying vicarious liability if something goes wrong during the procedure. You might still be left with a few hundred pounds shortfall. But that's a lot better, usually, than having to pay the full £1,500 - £2,500 cost in its entirety yourself. Does no harm at all, to me, to challenge the PMIs if for no other reason than, in my view, the reasons I've come across for rejecting claims for Crosslinking are not valid. And I have this weird notion that companies should not renege on their contracts or fail to live up to the promises they made in their marketing material just because it is hitting their bottom line.
Let me know if you need any more information at all. And sorry that you've got this added aggravation. No-one with our condition has it easy. The least we can hope for is that the products we've paid for do what we expected them to when we needed them to help us out. It's a double blow somehow that firstly you've got a condition which needs a stress-inducing decision to go for an invasive procedure for and then you've also got to battle against a system that's doing it's best to get in your way. We try to do our best here to assist anyone in need, hope that's of some use !
Best wishes
Chris
Re: Newly diagnosed.
Thank you so much for your support, its nice to know of people that have an understanding of KC and the hassles involved with sorting the treatment out. I am at the very early stages with Bupa, they haven't actually said no but they have mentioned the word "experimental". They have asked for a report from my consultant and will be letting me know their decision then. I shall wait and see what they come up with first and if its not favourable I shall go to battle! Your comments have helped me greatly already as I don't feel alone and have others to compare notes with. I will let you know when I hear from Bupa regarding their response. Thank you so much again for your help.
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russell_anderson
- Contributor
- Posts: 21
- Joined: Tue 24 Jan 2012 9:35 pm
- Vision: Spectacles
Re: Newly diagnosed.
Hi Debbie. I was diagnosed 2 years ago with Fuchs Dystrophy. I did nothing but a few months ago finally decided to have it looked at again. I went to a private hospital this time via my works AXA Health Scheme. This time I was diagnosed as having Cataracts and severe Astigmatism in addition to the Dystrophy. I knew the treatment for Dystrophy and Cataracts was covered by the Health scheme but the Astigmatism is not. The surgeon believed that an operation to remove the cataracts would be sufficient without an operation for dystrophy but recommended using a torric lens which he believes will cure a lot of the astigmatism. I have had to pay the extra for this lens even though without it I would still have vision problems.
Re: Newly diagnosed.
Hi, I have been waiting since my last post for people to get their act together!!! Anyway basically I spoke to a 'specialist' team at my PMI and explained that the consultation definitely indicated crosslinking. They communicated with my consultant and requested a full report from him. This was eventually done and received by my PMI. I was telephoned and was told exactly what I was expecting, crosslinking is experimental so therefore not covered, blah, blah, blah. I did point out that presumably it would be cheaper to carry out the crosslinking than transplants in the future but the answer was still no. I then requested that they send me a letter pointing out what they had told me verbally and that they had responded to my request as I had been advised, ie negatively. I did indicate that I had no intention of accepting their decision and that I would be in touch once I had received their communication. Approximately one hour later I received another telephone call to say that they were still not willing to accept crosslinking as it was experimental etc, but that they would contribute towards the treatment. The contribution, as far as I can see, would cover me for both eyes in full. Not sure what they are playing at but something is clearly going on here. Should I just be grateful for the 'contribution' or is there another agenda going on here???
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Re: Newly diagnosed.
A contribution is more than most people get. Presumably the insurers will be refusing to cover any after care or complications that could result. No procedure is completly risk free.
Your consultant can apply for funding on the NHS by applying directly to the Primary Care Trust for the hospital you are being treated at if he feels there is a clinical need and is in your best interests. This is how consultants got round fitting people with intacs on the NHS prior to NICE giving them the all clear to conduct this procedure on the NHS.
Most private hospitals that provide crosslinking where you as the individual have to cover it as far as I am aware will provide after care for life.
So for example you need to look at the full costs, so if you were to take a contribution from the insurers, what would you be liable for in the future vs paying for yourself but knowing you have after care for life?
If a transplant is required in the furture, would your insurers cover you as you went down the contribution for CXL route?
After crosslinking, you will more than likely still need to have some form of vision correction so you need to see who will be providing that. Some NHS trusts cease all NHS treatment once you go private treatment be it self funded or via an insurance company and it can be hard to get back in to the NHS system. So if you were to no longer have private health care, how would you manage the transition back in to the NHS.
Apart from cross linking still awaiting a decision from NICE to decide iif it can be made available on the NHS, all private health care insurers will consider this experimental. Those conducting crosslinking agree epthelium removal is best, but none can agree on how this should be done so there is variability in the results.
Your consultant can apply for funding on the NHS by applying directly to the Primary Care Trust for the hospital you are being treated at if he feels there is a clinical need and is in your best interests. This is how consultants got round fitting people with intacs on the NHS prior to NICE giving them the all clear to conduct this procedure on the NHS.
Most private hospitals that provide crosslinking where you as the individual have to cover it as far as I am aware will provide after care for life.
So for example you need to look at the full costs, so if you were to take a contribution from the insurers, what would you be liable for in the future vs paying for yourself but knowing you have after care for life?
If a transplant is required in the furture, would your insurers cover you as you went down the contribution for CXL route?
After crosslinking, you will more than likely still need to have some form of vision correction so you need to see who will be providing that. Some NHS trusts cease all NHS treatment once you go private treatment be it self funded or via an insurance company and it can be hard to get back in to the NHS system. So if you were to no longer have private health care, how would you manage the transition back in to the NHS.
Apart from cross linking still awaiting a decision from NICE to decide iif it can be made available on the NHS, all private health care insurers will consider this experimental. Those conducting crosslinking agree epthelium removal is best, but none can agree on how this should be done so there is variability in the results.
Gareth
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gatethecat
- Newbie
- Posts: 2
- Joined: Thu 25 Apr 2013 4:59 pm
- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
Re: Newly diagnosed.
Hello,
I am sorry to entirely crash your group here. I actually have Corneal Macular Dystrophy - very rare so no groups so a big thankyou for having me!! I have been diagnosed at 25 years old and doctor thinks I will need DALK in my worse eye within the next 5 years. The issue with Corneal Macular Dystrophy is also that it is likely to come back after the transplant also...
For this reason I am posting in this group. I currently have PMI with CIsco with work, they are one of the ones where you have to ring in advance to consultation/procedure etc etc to be given a pre-authisation code, to say you can go ahead. For this reason after I was told that I was going to need DALK I was keen to get in touch with them and check that it would be covered with this insurer. But the hospital will not share my documents/report etc of diagnosis until I am actually booking the procedure.
I don't really know enough about how insurance works but I am keen to work out whether if I change insurer to one of the ones that covers pre-existing e.g. Bupa is meant to be good right?!? and pay the premium then I am more likely to be covered for my lifetime... now that sounds a little dramatic.
Basically I am concerned about waiting to see if I have cover for the procedure when I am booking the procedure and want to take advantage of having time to plan - and take advantage of me being younger in a way...
Sorry if I am not explaining this very well at all,
Big thanks for your time, efforts and assistance.
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(F) 25
Corneal Macular Dystrophy
Going to have DALK in both eyes. (1 at a time)
---------
I am sorry to entirely crash your group here. I actually have Corneal Macular Dystrophy - very rare so no groups so a big thankyou for having me!! I have been diagnosed at 25 years old and doctor thinks I will need DALK in my worse eye within the next 5 years. The issue with Corneal Macular Dystrophy is also that it is likely to come back after the transplant also...
For this reason I am posting in this group. I currently have PMI with CIsco with work, they are one of the ones where you have to ring in advance to consultation/procedure etc etc to be given a pre-authisation code, to say you can go ahead. For this reason after I was told that I was going to need DALK I was keen to get in touch with them and check that it would be covered with this insurer. But the hospital will not share my documents/report etc of diagnosis until I am actually booking the procedure.
I don't really know enough about how insurance works but I am keen to work out whether if I change insurer to one of the ones that covers pre-existing e.g. Bupa is meant to be good right?!? and pay the premium then I am more likely to be covered for my lifetime... now that sounds a little dramatic.
Basically I am concerned about waiting to see if I have cover for the procedure when I am booking the procedure and want to take advantage of having time to plan - and take advantage of me being younger in a way...
Sorry if I am not explaining this very well at all,
Big thanks for your time, efforts and assistance.
--------
(F) 25
Corneal Macular Dystrophy
Going to have DALK in both eyes. (1 at a time)
---------
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Anne Klepacz
- Committee
- Posts: 2293
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Newly diagnosed.
Hello and welcome!
I'll leave our resident insurance specialist to answer your query, though I haven't heard of any cases where PMI wouldn't cover a corneal transplant. But it's always wise to check. And of course, transplants are routinely covered on the NHS.
All the best
Anne
I'll leave our resident insurance specialist to answer your query, though I haven't heard of any cases where PMI wouldn't cover a corneal transplant. But it's always wise to check. And of course, transplants are routinely covered on the NHS.
All the best
Anne
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