Dry eyes: I have suffered dry eyes for over 40 years... - NRAS

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Dry eyes

Bailybiscuit profile image
Bailybiscuit

I have suffered dry eyes for over 40 years. All was fine until last summer when I started having problems again. I contacted my GP who told me to go to my optician. The optician told me if I didn't take more care of my eyes I would suffer with corneal scarring and other problems. He told me to research eye drops.

After looking at so many and getting confused I spoke to my GP again. I was told to go to another clinic but when I rang they were closed because of Covid. I complained about the way I was treated at the opticians. I received an apology and an invite to see another optician. then she referred me to their dry eye clinic.

I saw a lovely man there and he told me has to follow guide lines and only after I had done all that he told me if I was no better he could refer me to hospital.

I only got worse so he was going to send me to the Cornea clinic but as I had an appointment coming up at the glaucoma clinic he wrote to them to ask if the person would see me. My GP wrote as well.

I went along on Friday. The lady seemed a bit off hand. I explained about the trouble I had been having and there should be letters from my GP and the dry eye specialist. Then she said I could buy eye drops. I told her I had tried them all. The woman went to her computer, looked at a page about my knees and came away. Then she said "In my opinion you haven't got glaucoma. I said that I was controlled on my eye drops, then she said I bet you went along and saw the Dr and she told you to come back and she did the laser treatment. The pain you had was dry eyes, not glaucoma. I said that my pressures were very high and I had the pain in the centre of my eye that I had been warned about. That is why I had the laser treatment the same day.

As she was looking for my records she went into another room and I could hear her talking to someone about me. When she came back she said she knew what the confusion was, I was in the wrong clinic. I said that I was in the glaucoma clinic and she said that I shouldn't be in her clinic, I should be in Miss Sharhids clinic. I told her I hadn't seen her in years and wondered if she had left. Then she asked if I would mind being seen by Miss Sharhid next time. I wanted to say "Any body except you" Finally she said " I suppose I should check your pressures"

When I asked about my dry eyes she said she could prescribe some drops, Ciclosporin, they would sting for 2 months and probably wouldn't work, or I could just carry on. What do you want? she asked. I said that what I really wanted was to go to the Corneal clinic . At least she said she would refer me but said that I will have to wait 12 weeks and probably be on the same drops that still won't work . I came out and rang my husband to collect me and got into the car and just cried. Was I badly treated? Why are people so rude. I hope this isn't too long. That was the second appointment at Addenbrookes that week and the orthopedic clinic was almost as bad. UK

33 Replies

I am so sorry they did that to you. Sadly I think this is the future of the NHS. Savage cuts in the form of neglecting patients. It’s as though they see if they can tire you enough that you don’t ask for any help. I wish I could be more helpful and positive, but my experience these last 5 years has been much like yours. That of crappy bedside manners, bad attitudes and blatant neglect. They are doctors for gods sake. Rant over.

Bailybiscuit profile image
Bailybiscuit in reply to amc282

My husband was so angry that he sat down and wrote to the chief executive, not sure that will help. As it is my whole examination seemed to be less. I had a field test, pressures taken by a nurse, then by that woman. I had my angles checked, but no scan or detailed examination. I hadn't been to the hospital since 2018 for my glaucoma check. I went to a community clinic but that only does basic things, that was in 2019. I am supposed to be checked annually. It seems to be common to treat people like this though nowadays.

amc282 profile image
amc282 in reply to Bailybiscuit

Your program sounds like mine. I am supposed to be checked for glaucoma annually. They tried to wriggle out of seeing me the year before COVID struck. Saying that I was stable. I have LSSc and I think I am developing Sjögrens, now. I am on Hydroxychloriquine as well . Always had dry eyes and it seems to be getting worse. Mouth now dry all the time. Last year the eye hospital just cancelled my appointment. This year we shall see. They are using Covid as an excuse for everything. I realise it is a serious thing, but, hell, there are a lot of other serious things going on, as well. Time to stop hiding behind Covid.

Bailybiscuit profile image
Bailybiscuit in reply to amc282

I hadn't had an appointment sent so as it was well overdue I rang up. The booking person went away and came back and said that they had removed a large number of people from their list. If it were possible she would get them to send an appointment. Luckily they did. It is terrible how we are treated. I hope you get seen soon. I would phone and ask to be seen

Thats the trouble with people who don't suffer the problems we do as they have no idea what we are going through. I hope you soon get the help you so badly need darling.xxx

Bailybiscuit profile image
Bailybiscuit in reply to sylvi

Thank you, so do I. It isn't just that clinic as earlier in the week I was at the orthopedic cIinic but that is another story.

That's disgraceful treatment, her attitude stinks. I hope your husband's letter does the trick. Please let us know how you get on. Good luck. x

Thank you .I will let you know.

You need this.: cuh.nhs.uk/contact-us/let-u...

I’ve found them very helpful when making complaints.

They are good and I have used them many times but I hope the letter to the chief executer might have some effect and get her into trouble.

I have dry eyes and been seen by the local eye hospital. My tear ducts have been plugged but they are still dry and my vision was affected. I am now on ciclosprin drops which have restored my vision and am waiting for a little procedure to cauterise the drainage ducts on my upper eyelids. All on nhs, been excellent.

I have never had to fault the eye department in the past. It just seems this Dr is different. I saw other Drs come to collect their patients and they seemed so pleasant, mine didn't.

I didn't let that Dr prescribe those drops, she didn't even really look at my eyes, didn't look to see if I had blepharitis, didn't ask what I had been doing to help them. I think she just assumed I was someone who decided they had dry eyes.

I'm so sorry to hear of your problems and worries with your dry eyes, I was diagnosed with Sjogrens a few years ago and prescribed drops but it was a lot of hassle trying to get them in, I'm annually tested for glaucoma because of my mother and two sisters, one of my sisters is now registered blind, since lockdown my eyes and nose are twice as dry, especially my nose. But I'm now using Neil med dry nose gel spray and Tesco's dry eye spray mist and these have halved my symptoms, I really hope you get sorted soon and get seen by a sympathetic doctor.

I tried the spray from Tesco plus every type available on prescription or what I could buy. it is so silly, they say that eyes are important but they don't really care.

It can be frustrating I know, I also get the Asda dry eye mist spray as well, I hope you can find one that helps you, I also have baby water wipes that I use throughout the day, I find they help when I'm on the PC or watching tv.

I am so sorry you are having so much trouble. I don’t have glaucoma but I was diagnosed with Sjogrens about 10 years ago. I have used all sorts of drops getting progressively stronger. The ones I use now are a slightly higher viscosity and they help. I have to instill them every hour but at the moment it works. They are called HYLO FORTE. Most chemist have them. I really hope you get the help you need but more than that I hope you find someone who treats you with care and compassion.

Thank you. I have tried Hylo Forte and for a short time it seemed ok but that didn't last very long. I am using Theoluz duo now and some days I can put it in every 10 minutes and it doesn't feel like I have. That Dr suggested I just put them in more often.

Did you find the Theoloz Duo bottle hard to squeeze?

No I didn't but when I used the single dose Visco tears I couldn't manage those.

I bought the Theoloz Duo about a year ago but I couldn't squeeze the bottle and even my hubby who is quite strong struggled to do it. I also noticed on a forum a few other people said the same thing. It's a shame really as I found them quite good. x

Knip profile image
Knip in reply to springcross

My husband has to do my drops...I can't squeeze the container either! They are made from such stiff plastic. The old fashioned pipette style droppers were so much better. Why did they have to fix what wasn't broken!

springcross profile image
springcross in reply to Knip

This happens with so many different things, why don't they just leave well enough alone. It makes no sense.

I have had dry eyes for quite a number of years and use eye drops prescribed by the doctor. Last year I started having problems with the vision in my left eye and was given an appointment at the eye hospital as the option thought I had macular degeneration in that eye but it turned out I had a hole in the macular which I have had an operation a month ago. I did wonder if having dry eyes had caused this. I would ask to be referred again if I was you.

Bailybiscuit profile image
Bailybiscuit in reply to polltax

I hope I will get an appointment for the Corneal clinic soon.

I find clinitas hydrate good . I’ve been using an eye supplement . Time health eye complex 7 supplement it really has helped.

Bailybiscuit profile image
Bailybiscuit in reply to J1707

I tried Clinitas too but it still isn't very effective. I was told to take Flax seed capsules

J1707 profile image
J1707 in reply to Bailybiscuit

I take those to lower my cholesterol.

I have early macular changes ( major family history of AMD) was told to take eye supplements it may help keep the eye healthy bonus part was it helps me with dry eye . Very unexpected. I use to use a night eye gel every night now very very rarely.

Bailybiscuit profile image
Bailybiscuit in reply to J1707

I haven't noticed a difference yet with taking them, about 6 months.

My RA consultant gave me some Clinitas Multi 0.4% eye drops, which a rep had just dropped off for him to try on patients. My GP now prescribes them and I find them helpful. Might be worth trying. Guess you are willing to try anything...any port in as storm, as it were. I am sorry to hear about what happened to you at the clinic. It is so unhelpful when a specialist speaks to a patient as if he/she is a hypochondriac. That kind of frustration makes things so much worse at a time when you really don't need it. Hope you get some relief soon.

Bailybiscuit profile image
Bailybiscuit in reply to Knip

Thank you. I have got some of the Clinitas drops but they still made no difference and her attitude to just say to just use more drops than I do doesn't make sense to me as If at times I use them every 10 minutes and they don't work surely there is something with my eyes that needs attention. If you don't fall into their little box of ideas of what they think is wrong then they don't want to look further. They are so set in their ideas it is a wonder they ever discover new medical knowledge. I am forever being told I am a typical. My husband thinks they should be interested in studying me if everything about me is so rare!

It could possibly be Sjogren's syndrome. I am no medic, but suffered with dry eyes and mouth for years before being diagnosed. I hope this helps.

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