Do I wait, go private or go A&E? - Macular Society

Macular Society
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Do I wait, go private or go A&E?

BLW95
BLW95
29 Replies

Hi all,

As some of you know, my optician spotted loss of pigment in the back of my eye durig an examination that I had requested due to white flashing lights in my eye. I had been in two weeks earlier as I had noticed floaters for the first time and the pigment issues were not spotted, despite having my pupils dilated. The optician advised that loss of pigment may mean eventual loss of central vision and just told me (after I asked) that to slow it down I should eat foods that have anti-oxidants in and live a healthy lifestyle. She didn’t give me a formal diagnosis and just said to take yearly pictures before sending me on my way.

I’ve been so upset since I’ve been told this, especially as I just turned 24 two days ago and I can’t imagine my life without central vision. I feel so depressed.

My optician isn’t bothered though. She sent me on my way after telling me and I’ve since asked her to refer me to a specialist and when I asked how long I’d be waiting, she told me, ‘it’s a non-urgent case so it’ll take 2-3 months to get an appointment, and they’ll probably tell you there’s nothing they can do’.

This seems too long in my opinion, giving my age, the fact that the pigment loss wasn’t spotted two weeks ago, so it could develop more in that wait time, and it feels a long time to wait given my anxiety that has stemmed from the situation.

So my options are; wait 2-3 months for an initial appointment, pay to go private (although I’m worried about the costs implicated in this as I don’t have a lot of spare money. My dad has offered to help bur I know he doesn’t have loads spare either), or as some forum users have suggested, go to A&E.

I’m not sure how I feel about going to A&E as I might be taking an appointment slot away from someone else who needs it more, and I’m worried I’ll be judged for using emergency services when the optician has told me it’s ‘non-urgent’.

So all of the above have bad points to them. My dad thinks we should try A&E or Private.

Which would you for?

29 Replies
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Jelbea

Hi BLW, I have found myself with this sort of decision to make on different occasions. My advice would be if you are worried then go to an Eye A & E. Most large hospitals have this facility so you would not be blamed for taking an ordinary A&E place. At my local Eye emergency there is often a long wait to be seen but I am sure if you are worried you will not mind this. Do have your questions ready and don't be put off if you do not understand the answers - just ask for more explanation. It is your eye and you have to do what you can to improve the situation. You could go privately as I have tried in the past but if you choose the Eye emergency route you will be seen on the day with no more delay. Best of luck and let us know how you fare.

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springcross

Hi BLW95. This post has just come through on my email - I had already sent you a response about half-an-hour ago saying to go to an A & E department at your nearest eye hospital. You shouldn't feel guilty about taking an appointment slot away from anyone else - you are important too. Go for it and let us know how it goes. xx

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Fishing1949

As a n AMD suffer myself, I would suggest having an initial appointment with a private consultant. This might at least put your mind at rest or advise you how best to proceed. You could then decide whether to go private or NHS.

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eyesright

Go to A&E.

The worst that can happen is a long wait and told optician is mistaken ( mine were correct on my left eye, not on my right) or they may say go to eye clinic Monday in their emergency slot (4pm my clinic) if the on call ophthalmologist doesn't think you need treatment today. I think the last is most likely.

Don't worry about taking a slot from some one else, its a 24/7 Dept and they will prioritize.

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kevinaki

1. Stop fretting & take action!

2. Write down your symptoms

3. Hop on your bike & speed to the nearest eye A & E

4. Don't mention the optician visits!!!!!

5. Write down the A & E diagnosis

6. Let us know

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Sianana

When I experienced my first bleed with wet macular degeneration, I paid about £150 to get seen by consultant faster. He is a lovely guy, and I'm glad I did so. I also went to eye A&E as my first point of contact, as others have suggested. Nothing is more precious than your sight. Do what you need to do!

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rollerboy

Hello BLW. I responded in some detail to your first post, which you apparently haven't seen. AMD is a very slow progressive disease that cannot be stopped, let alone reversed, at this stage of research, But you can slow it down even further by taking daily AREDS2 gelules as I advised last time. Do you have dry AMD, or wet AMD? I suspect dry, for which there is no treatment other than the AREDS2 gelules, and indeed, eat foods high in anti-oxidants - like kale and spinach - red wine too :) - no harm in trying A&E, but to set your mind at rest as to what you could do about it, consult a private opthalmologist. Expensive but worth it in terms of your own confidence. But start the AREDS2 NOW - you've already wasted about 14 days since I responded the first time ...

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Tetrazzini

Opticians sell glasses and generally are pretty unreliable clinicians. Mine said I had cataract in my remaining good eye - it wae actually AMD and I am now registered as sight imprired.

So, eye casualty in your nearest hospital and go today or ASAP. Forget private treatment until you kmow the diagnosis.

Good luck and best wishes, John

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MikeG1944

As others have said, GO TO A&E, don't feel guilty; anything to do with eyes needs seeing to. It's not like you're taking their time up with a scratch on your finger. If your extremely rich you could go private but bare in mind injections, should you need them, will be up to £1K each; it costs the NHS £800 a time for Eylea. A&E will see you within a few hours and it will put your mind at ease, and you could be seeing the same consultant as if you went private. Let us all know how you get on.

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BLW95
BLW95
in reply to MikeG1944

Thank you. You have made me feel better about considering A&E as my main option. I will go on Wednesday and hopefully get told my optician was wrong but otherwise at the least hopefully I’ll get a diagnosis and help with treatment and/or management 😔 I will let you know wht happens.

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Dipper2

Hello, not saying don’t go to A&E BUT if you can afford private health care I’d recommend you find a retinal specialist and go there. They have much more time to discuss, explain and explore options than NHS (sadly) so I’ve just found it a better and more reassuring option. I have csr by the way so not same as you, but I’d still apply same advice having been seen both by NHS and privately. Good luck x

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BLW95
BLW95
in reply to Dipper2

Thank you. I will have to start with NHS and then see how things are/wait times and potentially look to Private then, although I don’t think it will be affordable short or long term 😔

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ironbrain

As I said in my post on your first post, get a diagnosis as soon as you can, or at least as soon as your nearest eye hospital can provide it.

For an autoimmune condition, I can't believe other than to follow the autoimmune protocol is the best dietary advice – eliminate gluten, avenin, and anything else you may be sensitive to, e.g. dairy products.

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BLW95
BLW95
in reply to ironbrain

I will go Wednesday and hopefully get more information. In the mean time I shall look to improve my diet. Do you have any advice on things I should eat to help my diet? Any specific foods?

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ironbrain
ironbrain
in reply to BLW95

The AIP diet recommends eliminating all foods containing gluten, avenin or dairy products. I got very gluten sensitive about 10 years ago and would bloat right up if I ate as much as a small bread roll – barley grains were the worst, folloed by wheat, followed by rye, with oats with their avenin causing rather less of a problem. So, anyway, I'm very suspicious now of anything containing it. There is rice sensitivity, but it's mainly in the rice-eating countries. Some people can't digest or cope with lactose or have other problems with dairy. I think there may also be a peptide in milk that's thought to provoke an immune response.Sweet potato seems to be the carbohydrate recommended by the AIP, but I don't find it too appetizing to eat too often. Of course, leafy vegetables are OK according to the AIP and also provide lutein, but they may also have oxalic acid in them (spinach particularly – and, of course, one never attempts to eat rhubarb leaves) and all will have some amount of phytic acid, which tends to impede mineral absorption.

It's not long ago that I saw the AIP and doubt I'll ever be able to give up my morning coffee. I also eat a few rice crispies for carb. Again, I've a passion for cheese, so really I'd like to know how significant it is before giving it up ... without harming myself.

There'as quite a number of sites with information on the AIP and some with recipes, so I won't try to list any links here.

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Su_HelplineMacular

Hi again -

We strongly suggest either going to an emergency eye clinic - or paying to go private. An initial consultation is going to cost around £300 as we have previously advised. Do please call us, as we can have a look at some for you.

If you are then diagnosed with a condition which is treatable, you are under no obligation to go any further with a private consultant. We can, if necessary and appropriate, advocate for you to receive appropriately timed treatment with the NHS.

I really wouldn't worry about taking up another's appointment at A&E. Anyone in dire need of treatment in A&E will be seen before you. Yes, you might be waiting for a few hours, but at least you'll get a formal diagnosis. Would recommend you at least call or look at the hospital website to ensure that they have a duty ophthalmologist.

Your optician and GP have the relaxed attitude because they are not consultants. Neither of them have the qualifications, nor the equipment to diagnose you properly. An optician should be able to see an aggressive form of a macular condition which needs treatment via an OCT scan, however, as this doesn't, thankfully appear to be the case, they will have the "non urgent" attitude, which of course, doesn't help your anxiety!.

We don't want anyone anxious or scared. We can help you find a way to get this diagnosed properly by a qualified ophthalmologist, and quickly and then, if necessary and appropriate, help get you the treatment you need.

We have a full list of support services waiting if and when you need it, so do please call us.

Best wishes

Su

Macular Society

Advice & Information

3 likes
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BLW95

Hi,

Thanks again for getting in touch and being so kind. Both my dad and I are off work on Wednesday so we are going to go the emergency clinic then. I will be in touch with you once I have my diagnosis 😔

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Su_HelplineMacular

Hi -

Very pleased to hear this. Good luck and we are all thinking about you.

Very best wishes

Macular Advice and Information Team

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01776

Hello, I quite understand your dilemma, and when we are in a state of panic we do not always act in the best of our interests. When I was first diagnosed with dry AMD, I was told that I would be okay for another 20 years!! Opticians make poor diagnosticians. You do need to see someone urgently, not just for a proper diagnosis, but to try and alleviate some of your fears. I paid privately after my diagnosis, but unfortunately did not get value for money. It is a bit hit and miss within the private sector too. The Macular Society do not always know who is a good ophthalmologist, and who is not. Recommendations are hard to come by too. However, I would try privately first, and get as much information as you can. As said by Kevinaki, take a list of your questions with you, and ask. Sitting all day in an A&E department will not do anything to allay your fears, in fact, it may very well add to them as I have found out from experience. Do not waste any money on supplements at present, as they are not magic bullets. If they were, non of us would ever progress even further down the line with our eye diseases. If you pay privately, you will be seen the very next day, worth it to save extra stress. I really feel for you right at this present moment, but take a step in one direction, and carry on from there. Let us know how you are getting on.

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BLW95
BLW95
in reply to 01776

Thank you. I will have to go A&E as Private is just not feasible for me right now 😔 I dread my diagnosis but I can only hope there has been some misinterpretation from the optician.

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JimGlanDwr

I don't want to make you feel worse but you should get this sorted out, you may also try the OcuMel site and see if they can help, our daughter had Ocular Melanoma which was diagnosed after a visit to an Optician, luckily he was on the ball and referred her to an eye clinic she was treated within weeks of the visit.

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BLW95
BLW95
in reply to JimGlanDwr

Thank you, I will go Wednesday. I’m glad your daughter got treated and I hope she made a full recovery x

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Kraven

Make your own appointment or have your family physician do it for you - yes it is an emergency appointment - eyesight is extremely valuable and 2-3 months is inexcusable and I am sorry but I don't particularly care for what your optometrist had to say - she should be ashamed of herself.

Vern

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BLW95
BLW95
in reply to Kraven

I will go first thing Wednesday as I am off work and so is my dad. I know, I couldn’t believe it. She said it wasn’t urgent but when you get those sorts of things said to you, it definitely is urgent.

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BLW95

Hi everyone,

Thank you all so much for taking the time to reply to me. As I don’t have enough money for Private care, I am going to go to eye emergency A&E Wednesday morning. I’m on a 10 hour day shift tomorrow so can’t go then and on Wednesday my dad is off work and so can take me and also listen in to my diagnosis.

I know it’s slim but I’m hoping for a misinterpretation of the pictures from my optician and hoping that it’s something treatable.

I shall let you know of my diagnosis.

Thank you all again x

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GavinM

Just food for thought. I went private to get a diagnosis (within 72 hours) and then continued under the NHS. Private consultation £150.

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BLW95

Hi all - and update. So as you know I’d been planning to go to the hospital tomorrow however, the referral team phoned me today and said they could get me scanned on Thursday (day after tomorrow) and a consultation on Monday for a formal diagnosis.

so not the 2-3 month wait that my optician said! This either means it’s actually an extremely quiet period or, they’ve seen my notes and want me seen quickly.

So I guess no hospital trip tomorrow and hopefully by next week I’ll know what’s going on 😔

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eyeshadow51

Hi there,

It sounds to me as if your optician is overreacting a bit. The only real way to determine what is going on with your vision is to see an eye consultant. An initial diagnosis in a private setting would cost around £300 but could be worth it to give you peace of mind.

24 seems an unusually young age to develop macular degeneration as such since it does tend to occur in older people, at least 50 plus.

As a rough rule of thumb, a good diet with the right foods helps with your eye pigmentation, green vegetables (spinach, kale, broccoli) blueberries and a host of other foods. You might like to try the various macular heath formulas for things such as Macu-Shield or the AREDS2 formula (available to purchase on Amazon)

Another thing, make sure you always protect your eyes in strong sunlight. Always wear shades and peaked cap when on holiday. I worked for a number of years in the Middle East but didn't wear sunglasses and this may have been a contributing factor to my own macular degeneration.

Good luck

Ray

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Catseyes235

Have you actually been to your GP as that would be the route to getting an appointment with an eye specialist? I don’t see it as being something for A&E as they may just tell you to see your GP anyway which should always be your first port of call as A&E is for A&E! I went through my doc who referred me and was seen within two weeks. Your optician is rubbish quite frankly and not in a position to call the odds on how your treatment progresses.

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