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should my dads optician have noticed GCA/PMR before he went blind?

Posted , 4 users are following.

ruth_14412
ruth_14412

hello PMR/GCA forum, 

Im in shock as last week my dad suddenly lost his sight 

it was eventually diagnosed at the hospital as GCA. sadly he is now blind

my question is: should his optician have picked this up in his eye tests?

Dad was reading the newspaper and suddenly couldnt see.

they went to the NHS optician who tested him and said she would write a letter to his GP. 

3 days later he visited his GP who ignored his symptoms and told him to go home!

thankfully he went to the hospital who admitted him immediately started steroids, but sadly his vision is gone. 

Im sure everyone has sad stories like this to share. 

but i really want to understand if he has been having regular eye tests, should the optician have noticed the eye problems and referred him sooner? he is 85 but very active and generally healthy.

and when he presented with greatly reduced vision last week, is the optician accountable for not telling him to go straight to A&E with a medical emergcency?

can GCA be picked up in standard NHS eye tests? or at least reduced blood circulation of the eye? any ideas anyone?

many thanks all

 

0 likes, 21 replies

21 Replies

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  • EileenH
    EileenH ruth_14412

    Posted

    I'm so sorry - what a devastating thing to happen.

    If the optician looked at the back of his eye at the time then they could possibly have seen there was poor blood supply to the optic nerve - I'm not saying it was certain because it can happen very quickly, just like a stroke or heart attack which is a similar situation, a lack of blood supply leading to cells dying. 

    My own optician in Scotland told me once about a local optician who saw someone like your dad, decided to sleep on it - and it was too late by the next morning. My optician would have written the letter there and then and sent the patient to the local eye department after phoning them to say they were coming and what he suspected. I know that because I once had to wait for him to do just that for someone who had arrived on his doorstep that morning with vision problems. 

    But no, regular eye tests wouldn't have identified it in advance. Whether the optician is accountable for not sending him to A&E I couldn't say. However - his GP needs some education. 

    Is this just in one eye? Or are both affected already? This doesn't help you and your father but there are a few units which are now operating fast-track referrals for people with query GCA and eye problems - in the hope of avoiding this sort of situation in the future and the national PMRGCAUK charity is working to try and improve the system. However, it depends on patients going straight to the optician or GP and on them recognising the urgency and reacting immediately. These set-ups are still few and far between and very much in their infancy - it is estimated that up to 3000 people are year are in the same boat as your father so it is something that is needed.

    • ruth_14412
      ruth_14412 EileenH

      Posted

      thank you EileenH, 

      one eye is completely gone. the hospital gave steroids to save the other eye. sadly his other eye has always been 'lazy' and so he can hardly see anything with it and no guarantee once he finishes his course of steroids it wont also deteriorate. i will look at the websites you mention, many thanks. 

       The optician tested/examing his eye when he went specifically because he lost his vision, but the optician simply said she would write to his GP, and didnt tell him to go immediately and so this im trying to understand if she was negligent? the GP certainly is! not that it will help my poor old dad now. too sad for him and my mum. 

  • mrs_k
    mrs_k ruth_14412

    Posted

    Ruth

    This is as EileenH has said a devasting thing to happen and I am also so sorry to read this post.

    Did  you Dad have any other symptoms?

    On this page there is a yeoolow box, scroll down to PMR and GCA click on it and it will take you to the main thread.   Follow the links to anyof the three charities and then read up the Diagnosis and Treatment of GCA by the BSR and then you will see the symptoms.  It is unusual that you Dad did not have any prior warning.

    When you say your Dad finishes the steroids, it might be that your Dad will be on steroids for the rest of his life.  Albeit on a lower dose then now, but it all takes time. 

    Please let us know how you get on.

    One thing that might help make contact with the RNIB for assistance to help your Dad cope with this blindness.

    • ruth_14412
      ruth_14412 mrs_k

      Posted

      thank you mrs k, 

      yes he did have symptoms, a fever which is unlike him (strong as an ox) also pain chewing and headache, which of course we put down to his old teeth & joints, -  as with many illness symptoms are not unique. but i feel the optician should have acted when he went to tell her he lost his sight and the GP also, in fact at the hospital once he told the Drs he had pain chewing they flew into action, so they understood the urgency. however, 4 days after the optician it was just too late.  I hadnt realised he will stay on steroids, so thats good to start thinking how to deal with the (any) affects on him. 

      i have contacted RNIB who were so super-helpful and gave us a free audio book disc to try, dad is a very active OAP and only just stopped going to college last term as he couldnt hear the IT teacher! so anything we can do to keep him active & engaged will be great.

      many thanks again!

    • mrs_k
      mrs_k ruth_14412

      Posted

      Can you get your Dad to see a Consultant Opthamologist, who might be able to help him with his the 'lazy' eye.

      If you live near London, Moorfields  Eye Hospital is brilliant. Not saying they can do anything, but worth a shot.  If you live in the North East the Opthamology Dept RVI in Newcastle is excellent.  They are the only two I know of, but there must be others.

    • Light
      Light mrs_k

      Posted

      Moorfields is brilliant, but expect to wait several hours.

      Ruth, I am so sorry to hear about your dad. With no time to adapt, sudden blindness must be terriifying...

    • ruth_14412
      ruth_14412 Light

      Posted

      thank you Light, 

      not sure my dad will be willing to travel to Moorfields and wait so long, at his age & with poor mobility, but i will try to find out what his local hospital/Consultant can do. he is amazingly upbeat, really a battler!!! they dont make 'em like him anymore!

    • EileenH
      EileenH ruth_14412

      Posted

      Not wanting to sound pessimistic but if it is really what has always been called a "lazy eye" what the eye and brain don't learn to identify as a child can't be caught up with in adulthood - the reason it is so important children wear their glasses and do their exercises! My younger daughter simply said no (with added effects I hasten to add - lying on the floor and screaming and stropping, not just me being pathetic) and one eye is very poor now. Her question? "Why didnt you force me to wear my glasses?" Hmmmmmmm!

      This is a direct link to the page MrsK referred to on this site with further links to PMR/GCA sites. This link is allowed without moderation - nothing else is!

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316 ;

    • ruth_14412
      ruth_14412 EileenH

      Posted

      yes I agree EileenH, Dad's best efforts & 'positive thinking' now, wont get his lazy eye to 20/20! bless him!! but as you say being informed about GCA is a posiive action he can take, sorry to hear about your daughter. yes its easy to blame our parents once we're grown - thats familiy!!!!
  • mrs_k
    mrs_k ruth_14412

    Posted

    I meant to say, my Cousin who is 85 has just been supplied, on the NHS, with brilliant new hearing aids as well.
  • Lee-Colorado
    Lee-Colorado ruth_14412

    Posted

    Approximatily 13000 people are diagnosed with this a year and of that number, 3000 are men. Opticians very seldom see this until the patient is blind. My optician says he has only seen it twice in his thirty years of practice. I diagnosed it by using the internet after loosing vision in one eye. It takes an Optomoligist with special,equipment to see the optic nerve degenerating. Just plain tough luck, don't blame the Doctor.
    • EileenH
      EileenH ruth_14412

      Posted

      All optometrists have the equipment available to them to examine the retina with or without using drops to dilate the pupil. When they do that they can also see the optic nerve entry point and in some cases of GCA it will appear paler than normal if the blood supply to the optic nerve has been lower than normal over a period of time. If the case is that it is only over a relatively short time or the blood supply is only slightly restricted that may not be obvious and is easily missed. Opticians may only see GCA very occasionally - but they see other disorders where the optic nerve appears anoxic so should recognise it. It may be this optician saw something but thought it was due to one of the other causes - they obviously saw something to have written to the GP. At most fault is the GP I would feel - but they too may never have seen a case of GCA before in their lives. It is something that requires ALL the symptoms to be mentioned and put together - as the hospital did. But if the sudden loss of vision was due to a sudden massive blockage of the blood supply to the optic nerve it is possible that even then it would have been too late to rescue his sight. It is like  a stroke or massive heart attack - but even less can be done to recover full function. 
    • ruth_14412
      ruth_14412 EileenH

      Posted

      very interesting EileenH, im about to ask the optician what happened during the appointment, if they will tell me!    It is hard with elderly parents as they will have a different take on what they said and what happened, and i want to get a fair understanding of the situation. for the sake of my dad, he deserves to know it was 'unavaoidable' so to say. And at least it wasnt a fatal first heart attack , as so many poor souls suffer, and we are grateful for that. 
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