Early Macular Degeneration - Any Advice?

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  • kirtondmkirtondm Forumite
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    Personally I would say in an ideal world you would see the same optometrist every time - like ideally you would see the same GP. I am fortunate in that I work in a small practice in a small town so very much have my regulars.
    Most of the bigger practices esp the multiplles work more on locums so its more difficult..


  • edited 15 April at 5:31PM
    LouLouLouLou Forumite
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    edited 15 April at 5:31PM
    So far I have two very different opinions. You see, my worry is - which diagnosis do I trust, seeing as both opticians have only examined my eyes once?

    Today I phoned my long-term optician (10+ years) and asked if I could speak to an optometrist who could look at my history (especially my right eye), expecting a quick conversation. I was told for this "third opinion" I need to pay £40+ as the NHS doesn't cover this - they can't access the original 3D scan from the same company, different store (she didn't say WHY - I thought it could be faxed or emailed, sigh).

    Tried phoning my GP's surgery again. They still say I can't be referred to an eye specialist until an optician okays it. The receptionist was surprised I haven't been referred anywhere as they reckoned I should, if macular degeneration is suspected. She also said I should "appeal" the third NHS charge as I'm being told different things.

    Going from pillar to post now! I will wait to see what my long-term optometrist store says, next week.

    Edit: Forgot to mention. Two days ago I did my (unexpected) second eye test and discovered - my left eye (with new glasses on from the first optician) could barely read the letter chart! Mercifully the right eye read the board just fine.

    Another Edit: Hours later, my (long-term) optician's branch phoned back and said they will waive any fee. Which is a better outcome, I think!
  • TraySelectTraySelect Forumite
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    @LouLou - this is a bit late as things seem to be moving for you, but I had a similar experience ten years ago. I was about your age.
    I had my eye test at Boots where I had been before.
    The guy who did the test glibly said at the end of it that there was early signs of macular degeneration.
    He recommended further tests and treatments etc [I forget what}, all of which cost a lot.
    I was very worried, and wrote to him to tell me again what the evidence and his concerns and recommendations were.
    His response lacked sufficient detail and specificity for me. 
    I had another test [second opinion] at an independent optician. She found no problem. I was left wondering what the motivation of Boots Opticians was in suggesting all manner of things after (in my case) frightening the life out of me.
    I have used independent opticians ever since.
    I do not have macular degeneration.

  • PterionPterionPterionPterion Forumite
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    Requesting a written note of the findings is a good idea and one I recommend. As @kirtondm mentioned, it is preferable to see the same practitioner but unfortunately as healthcare in the UK evolves this will become less of an option as an increasing number of specialties including GP's rely on locums.

    I empathise with you in that you're still going around in circles if I may say but personally my trust would lie completely with the optician you saw for the second opinion. 
    Although they have only seen you at a single visit, in many instances despite history/records being required to deduce cause and onset, prognosis can be made much more easily even from a single snapshot. As you made them aware of the findings of the original eye test they would have been hypervigilant of AMD. 

    I'm not surprised by the initial request of a fee. Outside of GP, primary care professionals would charge a fee for their time regardless of the ethics behind this. It is actually refreshing to hear they've waived it. 

    As for the receptionists remarks at referral for AMD, only wet AMD warrants a referral, dry is usually monitored in practice. A suggestion that has just come to mind which is probably too late for now is at the appointment maybe taking a picture of the fundus photograph. It can be useful for you to have something to compare to. It may be frustrating to hear but you could actually request a copy of the 3D scan but legally they are entitled to charge you. 

    As for the the comment above regarding the extra tests treatments at a charge I would like to think it was a cautious optician in defensive practice but as with any private business a car salesman approach is always a possibility
  • LouLouLouLou Forumite
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    Requesting a written note of the findings is a good idea and one I recommend. As @kirtondm mentioned, it is preferable to see the same practitioner but unfortunately as healthcare in the UK evolves this will become less of an option as an increasing number of specialties including GP's rely on locums.

    I empathise with you in that you're still going around in circles if I may say but personally my trust would lie completely with the optician you saw for the second opinion. 
    Although they have only seen you at a single visit, in many instances despite history/records being required to deduce cause and onset, prognosis can be made much more easily even from a single snapshot. As you made them aware of the findings of the original eye test they would have been hypervigilant of AMD. 

    I'm not surprised by the initial request of a fee. Outside of GP, primary care professionals would charge a fee for their time regardless of the ethics behind this. It is actually refreshing to hear they've waived it. 

    As for the receptionists remarks at referral for AMD, only wet AMD warrants a referral, dry is usually monitored in practice. A suggestion that has just come to mind which is probably too late for now is at the appointment maybe taking a picture of the fundus photograph. It can be useful for you to have something to compare to. It may be frustrating to hear but you could actually request a copy of the 3D scan but legally they are entitled to charge you. 

    As for the the comment above regarding the extra tests treatments at a charge I would like to think it was a cautious optician in defensive practice but as with any private business a car salesman approach is always a possibility
    Thanks again PterionPterion - your observation that a second optician would be hyper-vigilant for signs of AMD makes sense and is a great reassurance. I'm probably over-thinking things now.

    Hopefully tomorrow's appointment puts this all to bed and I can focus (pardon the pun - again) on other things!

    I do feel my prescription is wrong (for my left eye) but I'm sure the optician tomorrow (same chain of stores) will give me another option if my suspicion is correct (the second opinion optician did remark on this).
  • Raspberry_QueenRaspberry_Queen Forumite
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    Vitamin A (from carotenes and other red and orange foods, also green leafy foods), vitamins C and E, and folate are really important to protect your eyes, and antioxidants like anthocyanins from purple foods are also good. Lutein and Zeaxanthin are also helpful and found in tomatoes, spinach and kale. 
  • edited 21 April at 6:49PM
    LouLouLouLou Forumite
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    edited 21 April at 6:49PM
    LouLou said:
    Requesting a written note of the findings is a good idea and one I recommend. As @kirtondm mentioned, it is preferable to see the same practitioner but unfortunately as healthcare in the UK evolves this will become less of an option as an increasing number of specialties including GP's rely on locums.

    I empathise with you in that you're still going around in circles if I may say but personally my trust would lie completely with the optician you saw for the second opinion. 
    Although they have only seen you at a single visit, in many instances despite history/records being required to deduce cause and onset, prognosis can be made much more easily even from a single snapshot. As you made them aware of the findings of the original eye test they would have been hypervigilant of AMD. 

    I'm not surprised by the initial request of a fee. Outside of GP, primary care professionals would charge a fee for their time regardless of the ethics behind this. It is actually refreshing to hear they've waived it. 

    As for the receptionists remarks at referral for AMD, only wet AMD warrants a referral, dry is usually monitored in practice. A suggestion that has just come to mind which is probably too late for now is at the appointment maybe taking a picture of the fundus photograph. It can be useful for you to have something to compare to. It may be frustrating to hear but you could actually request a copy of the 3D scan but legally they are entitled to charge you. 

    As for the the comment above regarding the extra tests treatments at a charge I would like to think it was a cautious optician in defensive practice but as with any private business a car salesman approach is always a possibility
    Thanks again PterionPterion - your observation that a second optician would be hyper-vigilant for signs of AMD makes sense and is a great reassurance. I'm probably over-thinking things now.

    Hopefully tomorrow's appointment puts this all to bed and I can focus (pardon the pun - again) on other things!

    I do feel my prescription is wrong (for my left eye) but I'm sure the optician tomorrow (same chain of stores) will give me another option if my suspicion is correct (the second opinion optician did remark on this).

    Sure enough, today the optometrist (same high street store to the first) who was able to look back through around a decade + of my scans reckoned there's nothing worrying happening with my right eye. It may be a scar or pigment change from birth, but it hasn't changed throughout. He was certain I don't have AMD.

    Also, my left eye prescription is indeed wrong, "by two steps", if I remember his words correctly. As my new glasses are varifocals the lens will need to be posted to the store and it will take a week - they'll amend my glasses on-site then.

    I wasn't charged for any of this, so, very happy with that, even if it has been a bit of a runaround and hanging over me a bit (though, the second opinion really did help soothe my anxiety*).

    Btw, the independent opticians (the "second opinion" - not the chain store) reckons that charging customers £10 for an OCT scan isn't fair as it's an additional healthcare service that should be free. Not sure if the high street chain claim the £10 back on the NHS, as my mum suspects!

    *And thank you so much to PterionPterion and kirtondm for your compassionate, informed replies - they helped a lot. I am an anxious type anyway and thought posting on MSE would be akin to HUKD (where they can be quite vicious) - everyone has been lovely on here.

    Wishing you all good health.

    Moral of the story: Stay with the same optician if at all possible!
  • Torry_QuineTorry_Quine Forumite
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    Yes going to the same optician who can see previous records definitely worked out for you. I'm pleased that things have come right in the end.
    Lost my soulmate so life is empty.

    I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
    Diana Gabaldon, Outlander
  • PterionPterionPterionPterion Forumite
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    Fantastic news. I'm glad to hear it has been resolved for you without additional costs. 

    OCT technology although not new itself, is relatively new to mainstream high street chain practices. It is considered an additional optional test (not included in the basic legal requirements of an eye test) and so is not covered in a standard eye test fee or NHS eye test if you are entitled to one. 

    Unfortunately optical and dental care funding works differently to GP and hospital but OCT can be useful in most cases although here may have created more worry than necessary!

    At least this has also given you an opportunity to have the prescription altered. Despite objective tests and verification methods being available the final prescription often boils down to subjective measures and a two step difference (0.50) isn't uncommon even though it may sound ridiculous. 

    Hope the new glasses work well for many years to come !!

  • kirtondmkirtondm Forumite
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    glad to be of some help. OCT tests can not be claimed back via the NHS! - The NHS pays a fee of £20 per patient regardless of tests required.
    a decent OCT costs 30-50K the 3 ways of paying for it are
    1) provided 'free' and added onto the cost of specs.
    2) Charge per patient as a screening exercise which generates a certain number of false positives.
    3) Charged for those patients who need it , they should be given the choice of paying in the practice or being referred via the hospital system.
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