Macular Society
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Your opinion please

This might be like closing the gate after the horse has bolted but - I am considering whether I should get a second opinion. I have only seen my Consultant once, on my first visit to the hospital, over 2 years ago. Having lost central vision in one eye and the other being very poor, I am feeling quite desperate. My sight is certainly not being preserved by injections. My hospital record is still showing "suspected AMD". I did point this out to one of the doctors but the last report I had it hadn't been changed. Are they sure - or are they still thinking about it!!

In looking for a second opinion, does anyone have any useful tips? I live in the Mendip area of Somerset.

Best wishes to all.

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yes definitely ask to see the consultant again- or ask your GP to refer you elsewhere for a second opinion. Take someone with you so they can help you remember the answers to all your pre-written questions!! Good luck

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Hi Bobbie,

rosyG is right you should be pursuing it further. When were you at the opticians last? Why not book an eye test in the first instance? the optician will be able to tell you if you have AMD or not. Why only suspected AMD when it can be verified so easily and quickly? sounds strange to me. Anyway good luck and don't wait around for your consultant any longer go elsewhere.

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Hi Bobbie

I am surprised and shocked that you have not seen a consultant for 2 years. Have you been monitored regularly? And "suspected AMD? They had 2 years to find out what had caused the loss of central vision in one eye and the poor vision in the other. It is possible that you have dry AMD in the "better" eye? in which case injections would not do anything for you. Has the vision in that eye deteriorated or is it stable, even if poor? Of course, there are other eye conditions that may cause loss of vision, therefore you need answers.

As for a second opinion - my GP was reluctant to arrange it for me and in the end, in my case, it was not necessary anyway. If at all you can afford it go for a private session with an unconnected consultant without the treatment, which would probably be far too expensive. You need no referral. A consultation may cost between £120 and £150 . You will have things explained to you and you get time to ask questions. You will be given a report, which you can take to your local clinic. The consultant may even forward a copy himself to the clinic. I know, such steps should not be necessary, but if you weigh up the cost against your vision it is worth it.

If you cannot afford it, try to phone your consultant's secretary and explain the situation. Keep putting pressure on the clinical staff for answers. Don't allow yourself to be fobbed off. Pester, pester, pester! The final option is to file a complaint to the clinic for lack of information and care.

Good Luck!

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Undoubtedly, you need to be your own advocate and as suggested earlier push, push, push. It is your eyesight and you need definite answers and to know your options.

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Hallo. Do you go for regular eye tests at an optician? I found my local specsavers far more informative on my condition than my consultant at hospital. They explained my eye conditions and actually listened to me.

Wishing you all the best

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Hi Bobbie, good advice from everyone. If you do look for a 2nd opinion I've been told by my gp that moorfields in London or the Bristol eye hospital are the places to go.

Personally I would write a letter of complaint to PALS first, copied to the clinic manager (or ask PALS to copy it for you). Say that you have raised your queries more than once but received no reply/no change in how your case is managed. Make the point that you have not actually been given a diagnosis yet and that this is unacceptable after 2 years - ask PALS to obtain confirmation that you are receiving the correct treatment (point out that it does not appear to be working) before you are forced to get a 2nd opinion.

Good luck x

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Hello Bobbie,

So sorry to learn about your eye treatment experiences.

Other posters have given some good advice.

It may well be worth seeking another opinion and if funds permit, having a private consultation. As Ayayay80 says, this could answer some questions for you and give you ammunition going forward.

If you would like a chat with the Macular Society helpline, please call us on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

We can also help you locate a suitable local consultant and a contact number.

Best wishes

Macular Society

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I am really sorry to hear of your experiences Bobby. All the above advise is excellent, especially talking to people at the Macular Society. I had a lot of trouble with both optician and hospital clinic. ADM to some eye people seems to be a mystery! What helped me enormously, and meant that I received excellent treatment eventually, was to write a desperate detailed letter of complaint to the Health Trust concerned + copies to consultants, booking clinic, GP & MP, (the latter two really fought my corner). Get friends and Macular Society to help. I do wish you the best and that you get successful treatment. .

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it took months to see any improvement in my wet and eye...from monthly injections.

everyone has unique genetics so u may have improvement after a year or two.

from my understanding, injections are used to slow the loss of sight and preserve at best what's left.

there is no cure yet

improved sight from injections is more of a rarity than the norm.

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Many thanks to you all for taking the time to post your opinions. I am most grateful to you. My next appointment is the 12 Dec and I'm going to have plenty of questions. If I feel I am being fobbed off I will get advice from the Macular Society about getting a second opinion. I don't mind paying for a consultation. I will let you know what develops.

Best wishes to you all. x x x

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