Most awful NHS appointment ever

[SharonS]

After waiting 7 weeks for a referral to an NHS opthalmologist and having eye problems for 3 years, I have been told to simply use drops whenever I feel like it (even though I explained the drops don't take the pain away) and to update my glasses prescription (I'm slightly under corrected in one eye but my new optometrist didn think it was worth changing the lens, I can see perfectly).

I am so angry! I tried to explain my symptoms but he just totally dismissed me!!! He said because I have no scarring or scratches my eyes look healthy. He said granted my TBUT isn't ideal (it's 4 seconds) and I definitely don't produce enough tears (he didn't do a schirmer, but my results have been 2 and 3 mm and most recently it was 1mm). So he said just use drops. I tried to ask about other things but I was so upset at having to argue with a doctor about this!! Why should I have to defend myself?? I feel like the NHS won't help until I'm in danger of losing my sight! I have been gettig dismissed for three years, if i had had help at the beginning maybe I wouldn't have ended up te condition I'm in now. Im only 24, I shouldn't be not producing tears!! I feel so angry and disappointed and sad because I was so hopeful for this. I have spent most of my savings on private doctors an treatments that don't work. My problem just seems to be getting worse and worse! I have asked my GP for a full blood test. I don't have a dry mouth so I don't think it's Sjorens , I just wish I knew what was causing this!

Sorry the rant but I don't know what to do!

[littlemermaid]

SharonS, Everyone here sympathises with your pain and frustration.

My understanding is contact lenses are classified by regulation (UK, USA) as prescription medical devices supplied by private practitioners. Entirely separate to NHS. You can report problems here https://www.gov.uk/government/organi...ulatory-agency.

For us, it was a question of searching for a sympathetic regular ocular surface disorder/cornea Ophthalmologist and an Optometrist to work with on attempting to identify the aetiology, while controlling inflammation and its effects. Then we could get on with other things while keeping the eyes comfortable. It's been pointless and harmful seeing non-specialist or uninterested staff, especially one-off.

Hopefully, the DEWS II project will help us with more possibilities, and push medical science and doctors' knowledge forward http://www.tearfilm.org/news-dews-returns.php

[sazy123]

SharonS, Everyone here sympathises with your pain and frustration.

My understanding is contact lenses are classified by regulation (UK, USA) as prescription medical devices supplied by private practitioners. Entirely separate to NHS. You can report problems here https://www.gov.uk/government/organi...ulatory-agency.

For us, it was a question of searching for a sympathetic regular ocular surface disorder/cornea Ophthalmologist and an Optometrist to work with on attempting to identify the aetiology, while controlling inflammation and its effects. Then we could get on with other things while keeping the eyes comfortable. It's been pointless and harmful seeing non-specialist or uninterested staff, especially one-off.

Hopefully, the DEWS II project will help us with more possibilities, and push medical science and doctors' knowledge forward http://www.tearfilm.org/news-dews-returns.php

Hi again Sharon,

I can totally sympathise I went through the same experience with the NHS when I first got diagnosed 10 years ago. I wasted 10 years going to doctors, even the experts had no solutions. Your young, like me, but you've found natural medicine earlier so you're on the right track! I wish I knew then what I know now about underlying causes, I wouldn't have wasted 10 years! Doctors don't know how to heal the body because all they use is drugs. They only know how to manage disease, which can help. Most of the people on my course, some with autoimmune, some with ME were told by doctors there was nothing they could do, and now they are healing with nutrition/natural medicine.

Take care Sara

[Karlie1]

Hi SharonS,
snap, exactly the same type of reaction from NHS GP and local NHS Eye Clinic. Yes it was only about 3 weeks until I saw a NHS Opthalmologist. Very sympathetic, but basically said "its not going to go away, learn to live with it. Pain is due to the nerve endings in the eye lids not getting enough fluid, but over the weeks,months(years?) this will become bearable".
Thanks very much. No other suggestions?...great!!
I feel so sorry when I read this site and see how young some are(I mean I am 59, and only just been diagnosed. I have only 20 years to go if I am lucky)
I have an appointment in a few weeks at the "dry eye clinic" in London.Maybe they can tell me exactly what I have and what can be done(if anything). I supect I have occular rosarea, but no-one has confirmed as of yet.
I am not ranting but understand your frustration. From my side, paid into the NHS all my life from 17, never been ill, never been in a hospital(other than to visit someone), and now I DO need some attention from it(NHS), but its not a lot(25mins).
Keep your spirits up.

[paalnoma]

Hi SharonS

I live in England and I experienced nearly the same thing. My GP also "dismissed" me. I understand your pain.

My story is that after realising that at least at that stage NHS could not help me, I seeked help through the private sector. I got a pair of scleral lens through private route.

[paalnoma]

Also SharonS, I am literally 18 years old and I just have dry eyes, no Sjorens. Stay strong!

[littlemermaid]

It's a worry that Optometrists are so sales-orientated they will try to enable contact lens wear even when there is posterior blepharitis or intolerance http://www.dryeyezone.com/talk/showt...ght=#post96397. We see this in their literature eg Review of Optometry.

This is a good optometrist paper, Dry Eye Management, R Henderson and L Madden, Optometry in Practice 2013 14:4 137-146 http://www.college-optometrists.org/...nt_C-34297.pdf but it does show how contact lens problems are seen as customer 'dissatisfaction' p139. It also raises questions of how/whether/when an optometrist would refer for investigation of dry eye aetiology, and who to. Local Optometric Committee documents reveal what service is available NHS on the high street.

[SharonS]

Hi Littlemermaid,

Yes i feel furious about this. I never understood the disease. I didn't know I could end up like this. All specsavers and 20 20 cared about was pushing. I feel furious.

[SharonS]

I had been going to these places for 2 years for help in my diagnosis. I was told there was nothing wrong. Most recently in January I was told I had evaporative dry eye but that there was nothing that could be done, that I had plenty I years because he could "see them". I produce almost no tears. When I went to see 20 20 on gorgie road on edinburgh with my dry eyes the woman refused to even look through my eyes wih a slit lamp. How was I to know. Honestly when I think about it i could just scream with rage. I'm so upset.

[unicorn]

SharonS, I'm so sorry to read about your experiences. I've had plenty of similar ones, believe me! I see you're in Edinburgh. If you're able to travel to Glasgow, I can't recommend my optometrist highly enough - www.peterivins.co.uk . He has helped me such a lot over the last three years. Not at all sales oriented, very focussed on eye care. These are the tests they offer: http://www.peterivins.co.uk/shop_eye...c?next=&id=308

I also had a good assessment at Glasgow Caledonian University where they have a Dry Eye Clinic. This is a free service. Feel free to PM me if you want any more info on either of these ... Take care x

Edited to add: i have also been to the Dry Eye Centre in London (@ Burnett Hodd) and tbh I think my local optician is better, not to mention they only charge £60 as opposed to the £225 I paid in London. Hope this comes across as honestly as its meant; not wishing to seem like I'm pushing a particular place!

[SharonS]

Hi Unicorn,

Thank you so much for that recommendation. I had no clue that was available do nearby to me. I'm originally from glasgow and moving back there next month so it's very handy. I've made an appointment next week with Peter ivans. I also currently have an appointment with the dry eye centre in London next Thursday primarily to see if I'm suitable for IPL. I wonder if I should reschedule this until after seen peter ivans?

Thanks again

[unicorn]

Hi, so glad it was useful info for you and that it's handy to get to. I'm actually seeing Peter tomorrow for a check up so I'll mention that you'll be seeing him!
As for going to London... That's a difficult call. As far as I know Peter Ivins doesn't offer IPL so if you want to get that you'd have to travel.
Have you seen a good ophthalmolgist? I am currently having to go to London for this (and pay privately) - imho it has been money well spent, but I like to have good local optometrist back up.

[SharonS]

Hi unicorn,

I am going to send a private message for some more information if that's OK. I'm struggling to come to terms with this disease, even though it is worsening with time, I still sometimes think I will wake up normal and that it's not really happening to me. This site is 100% without a doubt the only place where I have been able to source any real information about dry eye and treatments. So thank you for your information and support.

[SharonS]

Also thank you to everyone else you commented for your kind words and support. I could just cry when I read some posts because of how supportive everyone is on this site to each other. Take care.

[lizlou29]

Good luck SharonS, I've run the gauntlet of useless ophthalmologists but have now found one I can work with. Not sure all clinics are the same but when I go to my appointments (every 2 months) I often get called in by some random ophth and now I just say I'm there to see the same ophth I've seen before so he can monitor my progress. Took me ages to learn to stand up for myself but there are only so many times you can hear "goodness you've tried everything", "your eyes are very dry aren't they, you need more drops and warm compresses" etc etc.
Have you seen a Rheumatologist? I know you don't have a dry mouth,I dint either but they still suspect Sjogrens despite negative blood tests and an inconclusive lip biopsy. I have ocular rosacea so i feel that's my main problem. I've had dry eyes since my early 20s, I'm now 31 so I know how much it sucks going through this at a relatively young age.
Glad Unicorn could help. I'm always here if you want to vent through PM.