Blind and Visually Impaired Community
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Complaining about a hospital (self.Blind)
submitted by Fritzer7290
Hi guys, I've come here with a bit of a dilemma. I've been going to the hospital for about a year with a condition that is rare enough and doctors want to track my progress.
The problem is that over the past year my experience has been rather horrid and today was the tipping point for me. I'll start with what's happened before:
Basically all I know about my condition is that it is rare and the prognosis doesn't look good. The doctors have admitted to knowing nothing about it yet don't pay any notice to me complaining of suffering horrible migraines and eye pain and have offered no help.
The hospital have offered me no support at all and even reckon I'm ok to drive. I'm not happy to with my level of vision and charity organizations for sight loss have told me I shouldn't, especially if I don't feel comfortable. They also exaggerate that basically nothing is wrong with me but I find simple tasks like getting around, cooking food and studying a million times harder than they were before.
I've had many tests with the hospital before, with them doing the colour blind test and me only being able to get one half of the number, the doctor telling me to go again until I get it (which is usually at least six more times and is me guessing because I can't see it). I've done three field tests as well, the second being done after I insisted my peripheral vision was worsening, the test reflecting this and the doctor disregarding it and saying they're highly unreliable and can't be used. I did another today, which showed some of my centre vision getting better, and this time they insist the test is reliable.
Once I had horrible pain in my eyes and my head aggravated by light and so bad I couldn't do anything which was accompanied by feelings of nausea. I went to a GP who sent me to the A&E. After being seen by a new doctor, the same doctor I had before was called to have a look at me. He denied my repeated explanations of being in pain, said I was lying and that I shouldn't be signed up with any organisations to help me and that I don't need a guide cane (which I haven't used since as I feel like a liar and a bigot, even though I trip over and walk into things/people)
After this my family was saying to report the hospital but I held off. Today I had another appointment and a different doctor and was there for eight hours. All that was done was a check up, a fields test and an unsuccessful dye test. Again my complaints of migraines was disregarded, I was given no new information and no treatment even though the doctors have said many times they think steroids would help. After the dye test I was told to wait and was left in the waiting room for 2 hours before I asked a nurse of there were many people ahead of me. She was really helpful and eventually found out the doctor had gone home without seeing me. She apologized but I didn't think it was her mistake to apologize for.
I finally got home and I feel so horrible, physically and mentally. I don't want to go back and I decided that was the last straw and made a complaint to the hospital. I come back from every appointment feeling tired, sad, embarrassed, and as if I'm a liar. My family and some friends are saying to take it further and get in contact with newspapers. What do you guys think? Thanks for your help
TL:Dr Hospital has been denying what I've been claiming about my eye condition and making me feel like a liar, I'm finally reporting them but unsure if I should go further.
Edit: I live in Ireland and am registered with NCBI
The problem is that over the past year my experience has been rather horrid and today was the tipping point for me. I'll start with what's happened before:
Basically all I know about my condition is that it is rare and the prognosis doesn't look good. The doctors have admitted to knowing nothing about it yet don't pay any notice to me complaining of suffering horrible migraines and eye pain and have offered no help.
The hospital have offered me no support at all and even reckon I'm ok to drive. I'm not happy to with my level of vision and charity organizations for sight loss have told me I shouldn't, especially if I don't feel comfortable. They also exaggerate that basically nothing is wrong with me but I find simple tasks like getting around, cooking food and studying a million times harder than they were before.
I've had many tests with the hospital before, with them doing the colour blind test and me only being able to get one half of the number, the doctor telling me to go again until I get it (which is usually at least six more times and is me guessing because I can't see it). I've done three field tests as well, the second being done after I insisted my peripheral vision was worsening, the test reflecting this and the doctor disregarding it and saying they're highly unreliable and can't be used. I did another today, which showed some of my centre vision getting better, and this time they insist the test is reliable.
Once I had horrible pain in my eyes and my head aggravated by light and so bad I couldn't do anything which was accompanied by feelings of nausea. I went to a GP who sent me to the A&E. After being seen by a new doctor, the same doctor I had before was called to have a look at me. He denied my repeated explanations of being in pain, said I was lying and that I shouldn't be signed up with any organisations to help me and that I don't need a guide cane (which I haven't used since as I feel like a liar and a bigot, even though I trip over and walk into things/people)
After this my family was saying to report the hospital but I held off. Today I had another appointment and a different doctor and was there for eight hours. All that was done was a check up, a fields test and an unsuccessful dye test. Again my complaints of migraines was disregarded, I was given no new information and no treatment even though the doctors have said many times they think steroids would help. After the dye test I was told to wait and was left in the waiting room for 2 hours before I asked a nurse of there were many people ahead of me. She was really helpful and eventually found out the doctor had gone home without seeing me. She apologized but I didn't think it was her mistake to apologize for.
I finally got home and I feel so horrible, physically and mentally. I don't want to go back and I decided that was the last straw and made a complaint to the hospital. I come back from every appointment feeling tired, sad, embarrassed, and as if I'm a liar. My family and some friends are saying to take it further and get in contact with newspapers. What do you guys think? Thanks for your help
TL:Dr Hospital has been denying what I've been claiming about my eye condition and making me feel like a liar, I'm finally reporting them but unsure if I should go further.
Edit: I live in Ireland and am registered with NCBI
vwlsmssng 6 points 3y ago
Is there a Patient Advocacy Service or Patient Advocacy Liaison Service (PALS) at your hospital?
E.g. https://www.patientadvocacyservice.ie/
I'm not familiar with how the health service operates in the Republic. I'm from the UK where PALS often help patients who feel they are being short changed by the hospital.
I also found this
National Advocacy Service for People with Disabilities
https://advocacy.ie/
E.g. https://www.patientadvocacyservice.ie/
I'm not familiar with how the health service operates in the Republic. I'm from the UK where PALS often help patients who feel they are being short changed by the hospital.
I also found this
National Advocacy Service for People with Disabilities
https://advocacy.ie/
Fritzer7290 [OP] 5 points 3y ago
Thank you so much for this! We have PALS and I was looking at it but was kind of confused by it, I may have a look again with a friend tomorrow. I got back so late and I'm so worn out I could have easily missed a huge help section or something.
yourmommaisaunicorn 3 points 3y ago
Write to the hospital’s CEO. If you’re able to, go to a different hospital. They clearly don’t care about tracking your progress, so why let them?
Fritzer7290 [OP] 1 points 3y ago
There is another hospital I could go to, it'd be way harder to get to but probably worth it
torelma 2 points 3y ago
Hi, this is maybe a little too personal but I've been experiencing some *very* similar symptoms to yours (peripheral vision loss that doesn't feel like it matches up with field tests, headaches/eyeaches, increasing light sensitivity, night blindness, it's a rare condition that ends up making you feel like a faker because the condition itself sounds made up) and particularly almost the exact same test protocol, and I'm obviously not a doctor but I can't help but wonder whether we have the same thing (Choroideremia/CHM) or something similar. Based on the kinds of tests you mentioned it at least seems to be retinal degenerescence- related, but you don't have to say if you're not comfortable. If you are I'd very much like to continue this conversation 1-on-1.
If it is the same thing, or maybe even if it isn't, you're going to want either sunglasses (I didn't say dark glasses) or regular glasses treated to filter blue light depending on how much time you spend outdoors vs in front of a screen and depending on how good your/your parents' insurance is. I work a desk job, and was getting excruciating headaches by the end of the day, like someone was stabbing me in the back of the eye. The day I switched from my usual pair to my spare pair filtered for blue light it noticeably reduced the frequency and intensity of headaches.
I went to the hospital last May. The doctor I go to see every couple of years personally diagnosed me when I was 13 (I am now 26), and she's basically the one ophthalmologist I trust to not treat me like their med school textbook, to the extent I barely go for regular myopia checkups anymore because I know I can kill two birds with one stone if I wait for the hospital visit.
When I got to the visual field test it was in a dark room and I couldn't see a thing, and I was panicking because it felt like I'd lost so much vision since the last time I went there. I even overheard technical assistants thinking they'd made a mistake in their measurements because they seemed so off. When I got through that battery of tests and got to the doctor, maybe it's just that she was intentionally being positive , or because she sees far worse shit on a daily basis, but she was like "ok, as we both know you are losing eyesight, but it's not evolving faster than expected, and you should still see a bit on the sides" based on the visual field test readings where I missed some massive proportion of signals. There was even an awkward moment where she was confident I wasn't walking into doors or anything and I was thinking to myself like "I definitely am though?"
Anyways, it isn't nearly as bad as the experience you had with your doctor and I'm sorry you went through that, but it just reminded me of that experience of sitting there with dilated eyelids, in a hospital waiting room, alone, for fucking forever, barely able to find your way to the test rooms but sighted enough that you feel like you're being dramatic, feeling like everyone's staring at you because they know that this is it man, this is your life, and there are only a handful of moments in my life where I've felt quite so helpless.
It was shitty of your doctor, don't get me wrong, maybe calling the press isn't super necessary unless you know there's another doctor around to replace him for you, but I'm wondering whether it may also be an issue of differential diagnostic, since when I was a kid I had a doctor who was convinced I was fucking with him and my eyesight was totally fine, until we saw this other guy who by some stroke of genius bothered to take a look at my retina, saw that it was fucked, and referred me to the university hospital. So tbh I think I have an idea of how you're feeling, and I think the others might too, and like if you need to talk or vent or whatever this is absolutely the best place for that.
If it is the same thing, or maybe even if it isn't, you're going to want either sunglasses (I didn't say dark glasses) or regular glasses treated to filter blue light depending on how much time you spend outdoors vs in front of a screen and depending on how good your/your parents' insurance is. I work a desk job, and was getting excruciating headaches by the end of the day, like someone was stabbing me in the back of the eye. The day I switched from my usual pair to my spare pair filtered for blue light it noticeably reduced the frequency and intensity of headaches.
I went to the hospital last May. The doctor I go to see every couple of years personally diagnosed me when I was 13 (I am now 26), and she's basically the one ophthalmologist I trust to not treat me like their med school textbook, to the extent I barely go for regular myopia checkups anymore because I know I can kill two birds with one stone if I wait for the hospital visit.
When I got to the visual field test it was in a dark room and I couldn't see a thing, and I was panicking because it felt like I'd lost so much vision since the last time I went there. I even overheard technical assistants thinking they'd made a mistake in their measurements because they seemed so off. When I got through that battery of tests and got to the doctor, maybe it's just that she was intentionally being positive , or because she sees far worse shit on a daily basis, but she was like "ok, as we both know you are losing eyesight, but it's not evolving faster than expected, and you should still see a bit on the sides" based on the visual field test readings where I missed some massive proportion of signals. There was even an awkward moment where she was confident I wasn't walking into doors or anything and I was thinking to myself like "I definitely am though?"
Anyways, it isn't nearly as bad as the experience you had with your doctor and I'm sorry you went through that, but it just reminded me of that experience of sitting there with dilated eyelids, in a hospital waiting room, alone, for fucking forever, barely able to find your way to the test rooms but sighted enough that you feel like you're being dramatic, feeling like everyone's staring at you because they know that this is it man, this is your life, and there are only a handful of moments in my life where I've felt quite so helpless.
It was shitty of your doctor, don't get me wrong, maybe calling the press isn't super necessary unless you know there's another doctor around to replace him for you, but I'm wondering whether it may also be an issue of differential diagnostic, since when I was a kid I had a doctor who was convinced I was fucking with him and my eyesight was totally fine, until we saw this other guy who by some stroke of genius bothered to take a look at my retina, saw that it was fucked, and referred me to the university hospital. So tbh I think I have an idea of how you're feeling, and I think the others might too, and like if you need to talk or vent or whatever this is absolutely the best place for that.
[deleted] 1 points 3y ago
[removed]
jrs12 2 points 3y ago
Oh dear! I live in the United States and have zero idea how health care works in Ireland. Do you have the option of getting another doctor? Is that a thing? The doing part of a test then leaving you section of this story makes me question other judgements this doctor is making.
We can't offer medical advice on the sub, but what specifically have they said is wrong with your eyes? There are some visual conditions which, oddly enough, originate in other areas. For example, cortical visual impairment is related to visual impairment in the brain, not the eyes. Similarly, conversion disorder has a psychological cause. If all eye tests have come back normal, have they made any suggestions about seeing a neurologist or other specialist to rule out why you are having these symptoms?
I am so sorry you are dealing with this difficult situation with few answers, but it looks like you created an account to post this question here today. At the very least, you have found an excellent group of people with diverse experiences. I'm hoping we can be of help to you on your journey.
We can't offer medical advice on the sub, but what specifically have they said is wrong with your eyes? There are some visual conditions which, oddly enough, originate in other areas. For example, cortical visual impairment is related to visual impairment in the brain, not the eyes. Similarly, conversion disorder has a psychological cause. If all eye tests have come back normal, have they made any suggestions about seeing a neurologist or other specialist to rule out why you are having these symptoms?
I am so sorry you are dealing with this difficult situation with few answers, but it looks like you created an account to post this question here today. At the very least, you have found an excellent group of people with diverse experiences. I'm hoping we can be of help to you on your journey.
Fritzer7290 [OP] 2 points 3y ago
They think it's something to do with my macular but they're clearly suspicious of my brain due to the dye tests, but they've tried three times and failed doing it twice because my veins are so finicky. The first time they didn't bring too much attention to it but they haven't been telling me anything. Apparently they're looking to see if the veins in my eyes are leaking blood and that has something to do with the brain? It was explained to me really badly.
torelma 5 points 3y ago
Based on the symptoms you've mentioned, I strongly suggest you get a recommendation to a retina specialist. If the dye test is what I think it is (the thing where they give you eye drops that make you pee fluorescent), my understanding is that the different layers of your retina retain fluoride differently, so they can basically look to see if there's anything wrong with any of them individually (macula, RPE, choroid).
If you don't mind me asking, roughly what age are you and how long have you been experiencing these symptoms?
If you don't mind me asking, roughly what age are you and how long have you been experiencing these symptoms?
[deleted] 1 points 3y ago
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afraidofdust 2 points 3y ago
What is your location? That may affect the advice you need.
Fritzer7290 [OP] 2 points 3y ago
I'm in Ireland, I'll edit it into the post
BlueRock956 1 points 3y ago
Here in the US I would send you with a low vision specialist, so that they could do an evaluation.
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