I have just been speaking to someone at the Macular Society, and have been advised, that if I have dry AMD, then it is not worth seeing a specialist, as there is nothing that can be done for me. I have noticed a few distortions with my left eye, they come, and they go, but they are there everyday. I know that the only way to know if my dry AMD is turning to wet, is to have a scan. I was advised to attend my GP, or to pay for a scan privately. I was also told, that some opticians have the ability to take scans in their shops. However, upon ringing around, I was told that this equipment was too expensive for them to purchase, and the only way for me to get a scan, was to attend a hospital. Now, I am back to square one, how do I get around obtaining a scan. Paying privately is out of the question, and my GP will certainly only tell me to go to my present optician. Am I being advised correctly, or am I being overly cautious?
Confused: I have just been speaking to... - Macular Society
Confused
Hi 01776
I think if you ring round a few opticians you will find one with a scanner. A lot have them now. My opticians which is in the village where I live have one. It was during a scan with them that they discovered my CNV and refered me immediately to the hospital. I think they charge £25 for most people but do mine for free as I am a 'complex case' and have prescription of over -10.
I don't blame you for wanting a scan. It's the only way to put your mind at rest.
Good luck to you. Gx
Hi
It is correct that an optician will not usually refer you to hospital if you have dry AMD as there is no treatment for the dry type.
If an optician diagnoses dry, then generally speaking the only way to a consultant appointment would be via GP referral (and be prepared for a wait) or to pay privately.
For any evidence of WET AMD, opticians MUST refer immediately to the eye clinic, and this should be done via fast track and within 24 hours.
If an individual has serious concerns and cannot get an appointment with an optician fast enough, then we would advise to go to the emergency eye clinic and get them to scan there (again, prepare for a few hours' wait).
A person with dry AMD who has concerns about changes to their sight should therefore attend an optician as soon as they can, to establish whether the dry type has turned to wet. This is of course only identifiable via an OCT scan, which most opticians have. Some may charge for the scan. We have heard everything from free to £50. This depends on the optician practice, so it is an idea to discuss cost when making the appointment.
It seems odd that you have been told that the equipment is too expensive to purchase? Many and most opticians have an OCT machine as standard. Specsavers certainly do - see attached link.
aop.org.uk/ot/industry/high...
Macular Society
Advice and Information
0300 30 30 111
I think if you are experiencing distortions you need to be seen quickly to rule out wet AMD I would find your nearest eye hospital/hospital with a walk in facility and present yourself saying your vision seems strange - so they will scan and test you
Hi 01776. I would agree with rosyG on this. Go along to the Eye Hospital (do you have one in your area?). Tell them that you are really worried about it and they will take it from there. All the best. x
Hello 01776 - um, I'm the one that's confused! Your GP should refer you to an opthalmologist (NOT your High Street optician). 'Scan' is misleading in that the opthalmologist will photograph your retina and examine the enlarged image on a computer to determine whether or not you have dry AMD (or any other malfunction). Getting an appointment with a opthalmologist can take up to 6 months though.
It's true that the diagnosis is a bit haphazard - I wasn't told that I had dry AMD for years and years. My left eye lost central vision 11 years ago, and still no-one told me why. I had my eyes checked every year and STILL I wasn't told my right eye was also affected until about 18 months ago, when I had a cataract removed from that eye - I could have been taking delaying meds, like AREDS2, all that time had I known. Even then, I wasn't advised to take the AREDS2 meds - I found out about that myself - but when I told my eye-guy I was taking them he approved and told me to keep taking them - but he had never mentioned them before ... why not?
It's all very unsatisfactory, in my view, a sort of Cinderella problem. One hears of miracle procedures, but no hope whatsoever of getting one yourself.
Hello Rollerboy,
AREDs 2 supplements are not a medication and should not be confused with such. They are supplements that contain vitamins that can be found in a healthy diet containing lots of leafy veg (such as kale, spinach, broccoli)
The scientific field is split as there is no definite proof that these add a benefit to one's eye health, this is why most ophthalmologists and doctors do not recommend someone to take them. (Of course, if someone cannot obtain these vitamins from their diet for another reason, a dr may advise you to do so)
Thank You
Becky
Advice and Infomation
0300 3030 111
Hi Becky - agreed, of course. But how do you KNOW you have ingested enough of each of the essential ingredients? Every single day? You don't - unless you take the suppliements for insurance. We snatch at any straw ... they can do no harm, but might do some good (at least so far as Caucasians are concerned - I gather there is some question about other ethnic groups) so health pros should at least mention the possibility given the lack of any other recourse. Hope matters ...
Of course, they do no harm, but there is no evidence that they provide any good as well. We don't want people worrying about purchasing them as they can be expensive
'lo again Becky! Perhaps you under-estimate the importance of faith? If you believe that what you are doing is right, it works - at least mentally. The American National Eye Institute conducted a study of thousands of affected people over decades, and accumulated evidence that certain substances in the right combination showed benefits. What is proof if not weight of evidence? Cost is a matter of priorities. One allows for the most important things first. Maybe we clutch at straws, but Hope matters ...
An optician is qualified enough to refer you to a hospital it does not have to be a GP infact opticians can actually phone and talk to eye clinics if there are concerns.
Agreed tallyho. I've twice been refered to eye clinic by my opticians and got seen very quickly. If I'd waited for a GPs appointment who knows how long I would have waited.
'lo tallyho - pity they didn't do that for me, then! The guy at the High Street Optician's just kept taking images with ever brighter lights until it hurt, and I refused - I'm sure he precipitated AMD in my left eye - a few days later the classic bright flashes and that was that. Maybe I was unlucky ...
Every Specsavers I have been to have one. I was charged £10. It was worth it though as they immediately referred me to the hospital eye clinic.
Hello, can’t advise on AMD but my local optician has an OCT scanner and diagnosed my csr using that. Good luck
Hi 01776 I find your comments rather confusing,.... Or perhaps it's me who has missunderstood, !!! Did you initially have a scan & informed you had dry Macular Degeneration,& if so where or who did your first scan & did they inform you to have further scans in the future if you noticed any changes,if so I personally would contact them & inform them of your concerns, I'm sure they will advise you accordingly....... you are of course correct that presently there is no treatment for dry Macular Degeneration, however it can develop into wet ,so if you have any changes in your vision, you need to to be referred immediately to an eye hospital where scans will be given , I hope you manage to resolve this problem, it must be very worrying for you, take care & good luck.
Hi Painting567, I was first diagnosed at my local branch of Specsavers in October 2017. They were most reticent to give me a verbal diagnosis, but instead gave me a leaflet about macular degeneration, plus an Amsler grid. I was told that I would not have any problems for another 10 years with this disease!!! They were probably practising clairvoyance as well as optometry. Of course I researched about my condition, and even paid privately to see a consultant. My consultant did stage my condition as dry AMD in both eyes, but with the right eye as being more affected. So, I attended a follow up appointment about 9 months later, during which time I had noticed a few minor distortions whilst looking at objects with straight lines. I mentioned this to my consultant, and believe it or not, even after he had promised to refer me to a hospital if I had any visual changes. He then took the clairvoyance route, and with just a slit lamp, said 'I THINK it is just down to your dry AMD!!' Hence, I have now located an optician in the West Midlands with an OCT scanner, and am going to pay for a scan to see if it has turned to wet AMD. In the West Midlands we do not have a branch of Specsavers with an OCT scanner. After reading up on their literature, it states, that they only have 35 branches in the country with these scanners. Other non Specsaver opticians with these scanners, apart from the one that I discovered nearer to me, are in Scotland, Oxford, Devon, Derby, Liverpool, Manchester etc. Thank you very much for your reply, as I could do with some good luck.
The Vision Express in the Arndale Centre in Manchester (UK) now does OCT scans as part of a general eye test. (They've not sent me the OCT images though, only the fundus photographs.)
Yes, our local Vision Express here in Andover includes the scan in the eye test as standard. This is why we say other opticians are available. Yes, it's a pain to ring around, but there are some offers out there.
Best wishes
Macular Society Advice & Information
0300 30 30 111
Hello again everyone -
Just to be absolutely clear:
- Under NICE guidelines - for WET AMD - referral is within 24 hours to the eye clinic by the optician. Never via the GP.
- for DRY AMD, no referral will be made to eye clinic.
We would never advise anyone to go via the GP for a diagnosis of WET, as precious time could be lost. It must always be a referral staight from the Optician to the eye clinic (even if they tell you differently, and if they do, call us!)
Some people like to see a consultant when a diagnosis of the dry type is made - but they will NOT be routinely referred and therefore this is the only time that a GP should be introduced - to get a referral to an NHS Ophthalmologist . As mentioned previously - this could be a long wait, sometimes 6 months or so. The option to pay for a private consultation is, of course, the individual's choice, but it is genuinely not necessary for a dry diagnosis. We can help locate private consultants, but we cannot recommend.
Specsavers:
specsavers.co.uk/eye-health...
There are currently 220 Specsavers branches with OCT scanning machines, including branches in the West Midlands. Ask how much they charge for the OCT. As previously mentioned, this can be anything for £0 to £50.
Other opticians are available! however, this is a very easy to navigate site, and has a wealth of information on free eye test eligibility, home visit services, and the all-important OCT scan locator.
The bottom line, folks, is if you have any changes to your sight which are causing you concern, then we urge you go attend an optician for further investigation, because undiagnosed wet AMD can have serious consequences.
I hope this clears up the confusion! Enjoy the sunny weekend, and keep those protective specs on!
Best wishes
Macular Society Advice & Information
0300 30 30 111
Monday to Friday 9am to 5pm.
My optician faxed eye clinic after an examination found AMD, she said they will ring you urgently to go to eye clinic if you havnt heard by Mon (this was Fri) let me know , which I did as I didn't hear from them , anyway , it took a week before I got there, some clinics etc dont/cant follow NICE guidelines 😣 no apology/explanation..
Hi JJnan
If you were seen within the two week period, then thankfully you were within NICE guidelines, which is good news. It's a nuisance that you had to chase yourself, and this shouldn't happen.
As previously mentioned, if opticians say that they need to refer to GP, then people must call us and we will help (sadly we have had a few of these cases, where opticians insist on referring to the GP, which is incorrect).
To remind - we are here Monday to Friday 9am to 5pm on 0300 30 30 111
Best wishes
Macular Society Advice and Information Service
Your optician can refer you to an eye clinic. And the eye clinic is where you will be told authoratively if it is wet or dry.
No you don't have to pay
Steven
What! You must have some awful health professionals in your area. You have problem and it needs looking at.
Our daughter had an Ocular Melanoma (eye cancer) discovered by a visit to the optician, within weeks she had it treated after visits to three hospitals. First a routine check at the eye clinic, then a visit to a specialist eye department then for treatment.
My own AMD diagnosis came out of the blue. I just got a letter telling me to attend an appointment at the local eye clinic, I didn't know why and who referred me. I had had both a diabetic annual eye screening and a visit to the optician a month or so earlier, I suspect the optician as they gave me an Amsler grid and told me how to use it.
Perhaps it's living in Wales we have a different government here.
Distortion it not necessarily a symptom of wet AMD. I have pretty severe distortion and mine is dry, I have had scans. I would be happier if I could see a consultant but at present just an optician yearly.
I had scans by volunteering at the local university where they are researching types of scanners.
Go to an optician and explain your situation, they will give you an examination which will show any changes in your eye ...if its wet they should urgently refer you to eye clinic...wishing you good luck .x
We are so lucky here in the UK. ... my heart go out to my US fellow sufferers.
Since my optician noticed Drusen in both my eyes nine years ago I have had annual scans in my opticians to evaluate the state of my eye. I used the Amsler grid regularly but detected no discernible changes. Every scan showed that things were stable...until my last one four months ago. It showed changes in the macular and so I was referred to the hospital and seen within three weeks, when injections began. I paid for the scans every year and don't regret a penny! £25 a year saved my eyesight, as early changes were diagnosed and addressed. I would urge you to find an optician who has a scanner and go from there, as I did. You will probably also feel better and more in control.
I am horrified by the way the medical field is treating you. I am in Pennsylvania, U.S. and my experience is so different. I developed MD young, it was discovered at a routine yearly check up. I was advised to have check ups every three months, which I did. After a couple of years, one eye turned into Wet, and now I am receiving monthly shots to control the Wet form.
Monitoring your eyes on a regular basis is mandatory for preserving your eyesight for as long as possible. Seek out the best medical help you can find.
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