Hi All....I think optometrists at first hand should know about the issues us patients have to face first from grass roots...this has to come from the top down and from us as well...National strategy should be talked about by everyone with a stake in KC...Up there in "consultant land" they don't know what is going on down here as much as an optometrist or a patient do!
I've had some really really bad experiances with optometrists and other medical staff...so bad i will not mention them here...but what i will say is most have standard excuses to get through their working day...without actually listerning to the patient...
The results of KC treatments, contact lenses or other-wise is in how happy WE are...not YOU!
...We just want comfortable, safe, vision we are happy with...the measure on this...more than other illnesses is how happy we are...as this is directly proportional to what we actually see visually,(Reading the eye chart is sometimes a deceptive measure of our sight as you may be able to see some of the letters but the visual area seen is distorted and small...so this test is deceptive and not a true measure)!...plus no correction is given in this country with testing for correction happening while glare is present..!)!....it is not measured in how happy consultants or any other eye care specialist are !!
And what i would like to know is ...who is "They"...the people or the "Mr Big"...lol... who is making decision on our treatment nationwide...can we not ask him or her to come on here...
I think up until now...KC has been managed in a "ad-hoc" way...and with various parties pulling in different directions...I think that needs to change....
Also...its about being approachable, open minded and diligent...and of course they must "get of their high horses !!"
Sajeev
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Patient perspectives of Keratoconus
Moderators: Anne Klepacz, John Smith, Sweet
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Sajeev...
There is no "Mr Big" out there making national strategy - it might be better if there were!
I have put up a page on my website today to try and explain the UK system -
http://www.eioi.org/kcpatientinfo1.html
I will add more pages addressing the issues raised here. I did not really realise how little patients understand about how the NHS works... so maybe this information can be useful!
Actually -we do understand about glare etc... we have to deal with it in cataract patients, those with macular degeneration, glaucoma and so on. The reason we keep to a fairly simple letter chart classification is that it is understandable world wide.
The reason the car number plate is still kept as a standard is that all lay organisations understand it and can measure it in real life.
Of course there are other ways of assessing vision - but if I explained your vision in terms of contrast sensitivity frequencies or logmar units - would many people actually be able to understand it? In research articles, descriptions of vision relating to glare etc are routinely written in those terms - but they are absolutely no use at all in the real world.
Yes there should be more exchange of information and this is what this thread is all about! One commodity not mentioned here is time. Tine to sit and explain. The NHS does not have the time available and the private sector simply cannot afford it. Remember - a private optometrist is paid per eye examination (either privately or from the NHS)- not a salary from the NHS.
So if someone sits down and talks to you for an hour - then they lose money that could be gained from other examinations. And remember - they are also dealing with diabetics, glaucoma patients, cataract patients, macular degeneration patients every single day and each one of those is just as confused and worried about their eyes as you are... there is just not enough time available to counsel everyone appropriately and still make a living.
Those of you lucky enough to find good optometrists may not realise just how much "free" time you are being given.
I am not trying to defend poor professionals here... just trying to explain why bad experiences happen.
Back to my page... do people understand the NHS optical voucher system? I can put up a section about that if you want?
Lynn
Ooops... my site seems to have gone down at the moment... attempting to compensate as they say in Star trek!!
There is no "Mr Big" out there making national strategy - it might be better if there were!
I have put up a page on my website today to try and explain the UK system -
http://www.eioi.org/kcpatientinfo1.html
I will add more pages addressing the issues raised here. I did not really realise how little patients understand about how the NHS works... so maybe this information can be useful!
Actually -we do understand about glare etc... we have to deal with it in cataract patients, those with macular degeneration, glaucoma and so on. The reason we keep to a fairly simple letter chart classification is that it is understandable world wide.
The reason the car number plate is still kept as a standard is that all lay organisations understand it and can measure it in real life.
Of course there are other ways of assessing vision - but if I explained your vision in terms of contrast sensitivity frequencies or logmar units - would many people actually be able to understand it? In research articles, descriptions of vision relating to glare etc are routinely written in those terms - but they are absolutely no use at all in the real world.
Yes there should be more exchange of information and this is what this thread is all about! One commodity not mentioned here is time. Tine to sit and explain. The NHS does not have the time available and the private sector simply cannot afford it. Remember - a private optometrist is paid per eye examination (either privately or from the NHS)- not a salary from the NHS.
So if someone sits down and talks to you for an hour - then they lose money that could be gained from other examinations. And remember - they are also dealing with diabetics, glaucoma patients, cataract patients, macular degeneration patients every single day and each one of those is just as confused and worried about their eyes as you are... there is just not enough time available to counsel everyone appropriately and still make a living.
Those of you lucky enough to find good optometrists may not realise just how much "free" time you are being given.
I am not trying to defend poor professionals here... just trying to explain why bad experiences happen.
Back to my page... do people understand the NHS optical voucher system? I can put up a section about that if you want?
Lynn
Ooops... my site seems to have gone down at the moment... attempting to compensate as they say in Star trek!!
Yes I do think it is due to money much of these things happen...
But once they realise that KC is often not detected at all as people don't know they have it (which comes to sub-clinical KC which is not detected in, for example, pre-laser tests to see if you can have laser...and from which elastia of the cornea can happen...which is much the same sort of condition as KC is) or correct well with glasses from their opticians (who never detected it as KC) and don't know...or even it is wrongly diagnosed as being astigmatism!...only then when news of this has spread...will their be any change of thinking...which may be...sadly..."too little too late"...
This was confirmed to me by a professor in corneas in the uk, as well....when i asked him weather he though KC was a rare illness...and the answer he gave me was that KC is common due to the above reasons,,,
BTW...he also told me that they have found out that it is genetic...but are still trying to narrow it down further...
I have had my eyes examined in other countries and their approach is different and i think better...they are more focused on KC than in the west...just a small example...each letter of the chart is shown one by one...so it is not a case of "which one am i ment to be looking at" as when correction is being done and due to this the speed at which testing is done is slowed down as well (which often is so fast!)...which is better for the KC patient and is very important to the KC patient as well!...From this more accurate correction can be given and its done WITH glare!
Personally as a small example I think there is enough evidence to add protection UV to contact lenses and glasses as an extra pre-caution from what i have been reading from vcarious sources...but yet again, its about taking your own health care in to your own hands...as none of this is put forward for discussion....
The most strange thing is when you find out you have KC...you are sent to see the contact lens department of a hospital...and when you ask about KC...they say..."we don't know...we are the contact lens department"?!?!?....so you ask them "where can I find out about my KC"?...then they would answer..."this is the right place where you can ask"?!?!?
Anyway...thanks for listerning!
But once they realise that KC is often not detected at all as people don't know they have it (which comes to sub-clinical KC which is not detected in, for example, pre-laser tests to see if you can have laser...and from which elastia of the cornea can happen...which is much the same sort of condition as KC is) or correct well with glasses from their opticians (who never detected it as KC) and don't know...or even it is wrongly diagnosed as being astigmatism!...only then when news of this has spread...will their be any change of thinking...which may be...sadly..."too little too late"...
This was confirmed to me by a professor in corneas in the uk, as well....when i asked him weather he though KC was a rare illness...and the answer he gave me was that KC is common due to the above reasons,,,
BTW...he also told me that they have found out that it is genetic...but are still trying to narrow it down further...
I have had my eyes examined in other countries and their approach is different and i think better...they are more focused on KC than in the west...just a small example...each letter of the chart is shown one by one...so it is not a case of "which one am i ment to be looking at" as when correction is being done and due to this the speed at which testing is done is slowed down as well (which often is so fast!)...which is better for the KC patient and is very important to the KC patient as well!...From this more accurate correction can be given and its done WITH glare!
Personally as a small example I think there is enough evidence to add protection UV to contact lenses and glasses as an extra pre-caution from what i have been reading from vcarious sources...but yet again, its about taking your own health care in to your own hands...as none of this is put forward for discussion....
The most strange thing is when you find out you have KC...you are sent to see the contact lens department of a hospital...and when you ask about KC...they say..."we don't know...we are the contact lens department"?!?!?....so you ask them "where can I find out about my KC"?...then they would answer..."this is the right place where you can ask"?!?!?
Anyway...thanks for listerning!
I remember that no information was given about the bad aspects of treatment with lenses...which i think the patient should be told of as then they can then take an informed choice about what they would like to do and when!
I think like all treatments the side effects of use should be clearly marked on. lets say in a leaflet in the lens cover...for example...
Also i think for many, contacts lenses are a part time measure to get vision...it is a temporary measure ...and as such contacts can not be seen as the conclusive answer....so expectations should not overly hyped up about contact lens use being brilliant and that you can wear them all day everyday and is the answer to all our problems...
...as if everything was ok...we would not hear about the complecations that a rise on here!
I think some honest stats on how many people are intolerant to contact lens should done...(why no-one has that information...now...I just don't know?)...then the magnitute of the problem can be measured!
Anyway just wanted to share...
Sajeev
I think like all treatments the side effects of use should be clearly marked on. lets say in a leaflet in the lens cover...for example...
Also i think for many, contacts lenses are a part time measure to get vision...it is a temporary measure ...and as such contacts can not be seen as the conclusive answer....so expectations should not overly hyped up about contact lens use being brilliant and that you can wear them all day everyday and is the answer to all our problems...
...as if everything was ok...we would not hear about the complecations that a rise on here!
I think some honest stats on how many people are intolerant to contact lens should done...(why no-one has that information...now...I just don't know?)...then the magnitute of the problem can be measured!
Anyway just wanted to share...
Sajeev
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Janet Manning
- Regular contributor
- Posts: 98
- Joined: Thu 25 Mar 2004 9:44 am
- Location: Abingdon,Oxfordshire
I'm sure you'll be a great ambassador for us Mike.
A few points for optometrists to note:-
1. Listen to the patient carefully.
2. Recognise the implications of going without lenses. We realise that the advice to do this from time to time is for our own good, but a little sympathy and acknowledgement goes a long way.
3. A willingness to try different lenses, without prejudice. (This arises out of the refusal I received to allow me to try sclerals, which have revolutionised my life and doubled my wearing time!)
4. All optometrists should at least have tried each kind of lens in their own eyes, so that they have some concept of how we feel on trying a new lens for the first time or learning to fit a new type. (I was a guinea pig for Ken, teaching foreign optometrists about sclerals and this woman was having great difficulty in getting the lens in my eye, despite my instructions about the scleral headlock!!!! I suggested she try putting a lens in her own eye first and she freaked out! I lost all respect at that point!)
5. Patience when teaching us to insert lenses.
6. Recognition that their efforts can completely change our lives, that there's a lot resting on their expertise and decisions. (No pressure of course!) We have often waited months, in hope, before an appointment and deserve good attention when we get there and a chance to ask questions.
I feel very fortunate that I get excellent attention now, having fought to be referred from my original hospital. It really is a post code lottery though and depends what is available in your area.
Good luck Mike.
Janet
PS Did a section of the Thames path on Sunday and thought of you!
A few points for optometrists to note:-
1. Listen to the patient carefully.
2. Recognise the implications of going without lenses. We realise that the advice to do this from time to time is for our own good, but a little sympathy and acknowledgement goes a long way.
3. A willingness to try different lenses, without prejudice. (This arises out of the refusal I received to allow me to try sclerals, which have revolutionised my life and doubled my wearing time!)
4. All optometrists should at least have tried each kind of lens in their own eyes, so that they have some concept of how we feel on trying a new lens for the first time or learning to fit a new type. (I was a guinea pig for Ken, teaching foreign optometrists about sclerals and this woman was having great difficulty in getting the lens in my eye, despite my instructions about the scleral headlock!!!! I suggested she try putting a lens in her own eye first and she freaked out! I lost all respect at that point!)
5. Patience when teaching us to insert lenses.
6. Recognition that their efforts can completely change our lives, that there's a lot resting on their expertise and decisions. (No pressure of course!) We have often waited months, in hope, before an appointment and deserve good attention when we get there and a chance to ask questions.
I feel very fortunate that I get excellent attention now, having fought to be referred from my original hospital. It really is a post code lottery though and depends what is available in your area.
Good luck Mike.
Janet
PS Did a section of the Thames path on Sunday and thought of you!
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John Smith
- Moderator
- Posts: 1941
- Joined: Thu 08 Jan 2004 12:48 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Sidcup, Kent
Janet,
I think you're dead right. I'd been shown a scleral before, and the thought of putting it in my eye filled me with dread, despite all the good things I'd read on the old forum...
Then I met Ken.
After a little chat to put me at ease, he then informed me that he was already wearing a scleral; he removed it and reinserted it before showing me the yellow-stained apron, and I then had the head-lock treatment
.
It really is that sort of attitude that warms you to the professional; the fact that you're treated as a person, not just as a statistic.
Mike, if I can add my 2p: I think it is really important for the optician to realise that this is potentially shattering news to a patient. It was initially "suggested" to me that I probably had KC, and that if I did, I'd need to have a corneal graft or two... and in the next breath it was suggested that I may have diabetes.
I was then left in silent thought [always dangerous
] whilst the optician (who I had the greatest respect for up until then) turned away to write up her notes. I fainted. Taking the time to explain everything is something that would have made the experience a lot less harrowing for me, certainly.
I think you're dead right. I'd been shown a scleral before, and the thought of putting it in my eye filled me with dread, despite all the good things I'd read on the old forum...
Then I met Ken.
After a little chat to put me at ease, he then informed me that he was already wearing a scleral; he removed it and reinserted it before showing me the yellow-stained apron, and I then had the head-lock treatment
.
It really is that sort of attitude that warms you to the professional; the fact that you're treated as a person, not just as a statistic.
Mike, if I can add my 2p: I think it is really important for the optician to realise that this is potentially shattering news to a patient. It was initially "suggested" to me that I probably had KC, and that if I did, I'd need to have a corneal graft or two... and in the next breath it was suggested that I may have diabetes.
I was then left in silent thought [always dangerous
] whilst the optician (who I had the greatest respect for up until then) turned away to write up her notes. I fainted. Taking the time to explain everything is something that would have made the experience a lot less harrowing for me, certainly.John
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Mike Oliver
- Contributor
- Posts: 22
- Joined: Wed 11 Feb 2004 9:57 am
- Location: London
patient perspectives of KC
Thank you to everyone who has responded. I have been given half an hour to speak although I am told I can overrun. Since the speaker before and after me is Ken Pullum time hopefully will not be a problem. Ken will just have to talk even quicker than usual!
I think those attending could be anyone - doctor, comsultant,optometrist or anyone else with a specific interest in contact lens and KC. I believe this study day is a preliminary to the BCLA conference which I think starts the next day. So I will include as many of the comments made as possible. I particularly like the suggestion that they should try the various types of lens in their own eyes - something I believe both Ken P. and Dan Ehrlich of Moorfields deserve credit for having tried.
I stress again that this is not about telling them how to do their jobs or establishing some unified practise or "one size fits all" approach. Personally, I believe it is simply about achieving the best compromise from what is available for each of us.
Any more contributions gratefully received - you are all writing my talk for me!
Janet, Thames Path was both a great experience and, at times, a nightmare. I was hoping to organise either a North or South Downs Way expedition in the autumn. Pressure of employment problems and back trouble has left little time especially with our own conference in June. If anyone is interested, what about a long weekend, say 3 day walk on a section of the North Downs Way as a taster for next year. If enough are interested (those who took part last time and anyone else interested), maybe we should still have a go.....or am I just a glutton for punishment?!
I think those attending could be anyone - doctor, comsultant,optometrist or anyone else with a specific interest in contact lens and KC. I believe this study day is a preliminary to the BCLA conference which I think starts the next day. So I will include as many of the comments made as possible. I particularly like the suggestion that they should try the various types of lens in their own eyes - something I believe both Ken P. and Dan Ehrlich of Moorfields deserve credit for having tried.
I stress again that this is not about telling them how to do their jobs or establishing some unified practise or "one size fits all" approach. Personally, I believe it is simply about achieving the best compromise from what is available for each of us.
Any more contributions gratefully received - you are all writing my talk for me!
Janet, Thames Path was both a great experience and, at times, a nightmare. I was hoping to organise either a North or South Downs Way expedition in the autumn. Pressure of employment problems and back trouble has left little time especially with our own conference in June. If anyone is interested, what about a long weekend, say 3 day walk on a section of the North Downs Way as a taster for next year. If enough are interested (those who took part last time and anyone else interested), maybe we should still have a go.....or am I just a glutton for punishment?!
I just saw Janets message and had to say I agree 100% with what Janet posted!
....I think above all else...please slow down when we are for example, getting our eyes tested ...life is a blur anyway!....I do see making the time is a problem...but that should be tried to be resolved through the right channels...
Sometimes just the right sort of attitude goes a long way!...and that does not cost nothing at all...
Anyway thanks Mike for giving me this opportunity to give some feed-back, as we are the customers!...
All the Best...
....I think above all else...please slow down when we are for example, getting our eyes tested ...life is a blur anyway!....I do see making the time is a problem...but that should be tried to be resolved through the right channels...
Sometimes just the right sort of attitude goes a long way!...and that does not cost nothing at all...
Anyway thanks Mike for giving me this opportunity to give some feed-back, as we are the customers!...
All the Best...
Last edited by Sajeev on Wed 27 Apr 2005 7:01 pm, edited 1 time in total.
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Sue Ingram
- Regular contributor
- Posts: 53
- Joined: Fri 12 Mar 2004 9:58 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Woking, Surrey, UK
Hi Mike, Just wanted to say that I agree with all the comments that everyone has made here. Can't think of anything else - most things have been covered!
Definitely interested in a walk on the North Downs in the Autumn - let us know as soon as you have any details.
See you on 18 June in Birmingham. SUE
Definitely interested in a walk on the North Downs in the Autumn - let us know as soon as you have any details.
See you on 18 June in Birmingham. SUE
SUE 
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Janet Manning
- Regular contributor
- Posts: 98
- Joined: Thu 25 Mar 2004 9:44 am
- Location: Abingdon,Oxfordshire
Hi Mike,
If you are going to be talking to doctors, I would add one more comment. Docs need to have have some understanding of optometry. i realise they are very different skills, but just as i had to learn about e.g. child protection issues as a teacher in order to liaise effectiveky with social workers, so should doctors/surgeons understand the implications of surgical intervention.
The 'success' of a graft is usually measured in terms of its surgical success - smooth, clear, no rejection episodes, no blood vessels growing into it etc. This is only half the story! The other half is the visual outcome for the patient. Can their sight be corrected more effectively than before the graft? Is lens toleration better/worse? Can glasses now be used?
My surgeon, rated my grafts successful and technically they are. That's a brillant start, but he had no understanding of the fact that my unaided vision was worse post graft, that glasses were useless - his own departmental optometrist refused to make me any - and that I could not function at work on 6 hours a day with lenses, that were painful and irritating.
He almost scuppered my chances of early retirement because of his lack of understanding. When I asked him to sign an application form for taped books from Calibre, his response was 'you're not partially sighted', but I was for 18 hours each day. During those hours I couldn't read, watch TV, make a cup of tea safely without great concentration, put a plug in a socket etc. Four weeks post 1st graft, he told me to get some specs and get back to work - 60 hours a week in an academic job. At that point I was trying very hard to come to terms with my situation, managing on one lens, with little correction, tearful and worried about the future. His attitude and lack of knowledge about optometry did not help at this point. A little human understanding and recognition in these situations goes a long way.
It would be very good if you could get this issue across. Thanks, Janet
If you are going to be talking to doctors, I would add one more comment. Docs need to have have some understanding of optometry. i realise they are very different skills, but just as i had to learn about e.g. child protection issues as a teacher in order to liaise effectiveky with social workers, so should doctors/surgeons understand the implications of surgical intervention.
The 'success' of a graft is usually measured in terms of its surgical success - smooth, clear, no rejection episodes, no blood vessels growing into it etc. This is only half the story! The other half is the visual outcome for the patient. Can their sight be corrected more effectively than before the graft? Is lens toleration better/worse? Can glasses now be used?
My surgeon, rated my grafts successful and technically they are. That's a brillant start, but he had no understanding of the fact that my unaided vision was worse post graft, that glasses were useless - his own departmental optometrist refused to make me any - and that I could not function at work on 6 hours a day with lenses, that were painful and irritating.
He almost scuppered my chances of early retirement because of his lack of understanding. When I asked him to sign an application form for taped books from Calibre, his response was 'you're not partially sighted', but I was for 18 hours each day. During those hours I couldn't read, watch TV, make a cup of tea safely without great concentration, put a plug in a socket etc. Four weeks post 1st graft, he told me to get some specs and get back to work - 60 hours a week in an academic job. At that point I was trying very hard to come to terms with my situation, managing on one lens, with little correction, tearful and worried about the future. His attitude and lack of knowledge about optometry did not help at this point. A little human understanding and recognition in these situations goes a long way.
It would be very good if you could get this issue across. Thanks, Janet
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