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Hospital eye appointment didn't go well - what to do?

(13 Posts)
hugshelp Wed 27-Nov-19 20:06:00

Sorry this is a bit long...

I am partially sighted and have been regular eye
appointments. It's complicated because I have optic nerve damage in one eye which means I have lost most of the vision in that eye and the other is lazy. I have a PVD which is incomplete going on in the good but lazy eye. Both eyes have early cataracts, blepheritis and dry eye. The dry eye is actually really troublesome atm and is making what vision I have really blureed and causing a lot of glare. I have been have regular appointments at one hospital and they have been doing everything they can to help. But today I was sent for an appointment at a different hospital.
So today's eye test I could tell went poorly, I struggled even with the top line a bit, and could just see bits of the second. And I felt the dry eye blurriness was causing a lot of the problem. And yet when I got sent through to the dr he really didn't seem very concerned at all with the dry eye. I've been trying drops from the pharmacist but I seem to be allergic to the ingredient which is common in most eye drops. After a lot of pushing the dr prescribed me different drops. Only the hospital pharmacist didn't have them. They said they could do them without preservative but they cost a bit more so the dr would have to agree to sign for this. He refused and said I will have to see my Gp. (I've checked and even preservative free costs less than the prescription but you can't buy them without so I'm a bit disappointed in this - the gp appointment must cost the NHS more)
Then I noticed the test results on my letter to the GP and and supposedly my test was 6/12 and 6/24 which is notably better than the test I did just a couple of weeks ago at an emergency appointment about the PVD and I know I did noticeably worse from the lines I could read.
Also, when I asked about my next appointment the doctor just sort of shrugged and said, 'I don't see much point, if there's anything new tell your GP'
The last hospital had said that if my sight deteriorated further they would change my status from visually impaired to severely visually impaired and that might get me a bit more help at least. But nothing was mentioned at this hospital. I am hoping that I can get some help with the dry eye and there might be some improvement again but I don't know yet so I felt rather like I'd been dropped at a point when I'm really struggling.

My first port of call is to get those drops from the Gp asap but I'm really not sure what to do about the rest. DH thinks I should complain (he came with and felt I was rushed through and things were not right) but I just want to work out what to do to get the best help I can.

brook2704 Wed 27-Nov-19 20:42:10

Hi
Sorry to hear you’re having so much trouble - I hope you get the right treatment soon to make things as good as they can be
I too suffer quite badly from dry eyes , sometimes worse this time of year when inside with the heating on etc. I’ve tried lots of preservative free different eye drops but the very best for me is the preservative free Hylo Forte which you can get on prescription or buy for about £10. Hope this helps

DoraMarr Wed 27-Nov-19 20:53:19

I’m sorry you had an unsatisfactory appointment. You can contact PALS (Patient Advice and Liason Service) at the hospital and explain your concerns, and they should be able to help you.

kircubbin2000 Wed 27-Nov-19 21:06:48

It might be worth paying for a private appt to see if anything can be done.

wildswan16 Wed 27-Nov-19 21:20:17

I hope you will be able to discuss this with your GP. They should be the ones helping you through this complicated condition. (I am sorry if they are not). Make sure they have received a full report from the eye consultant and ask them to go through it with you.

Daisymae Wed 27-Nov-19 21:50:24

You can ask for a second opinion. Have a look around and see if there's someone who is likely to be better. See your GP and ask them write to them, you can do this under the NHS.

Patsy70 Wed 27-Nov-19 21:56:43

I have had problems with the hospital eye clinic. I had cataract surgery in one eye, which was not necessary, and has not improved my sight in the least! I've also been prescribed Hylo Forte for dry eyes, but these do not help the condition at all. I have had more support and help from my local Specsavers! Speak to your GP and insist on getting the treatment you require. Good luck.

Summerlove Wed 27-Nov-19 22:01:04

I’m so sorry hugshelp, I can only imagine how frustrated you must feel. Can you push your GP for a different specialist?

M0nica Wed 27-Nov-19 22:19:35

I can only comment on one specific and that is the drops. Quite a number of people are allergic to the preservatives in eye drops. I am one of them and had to stop wearing contact lens for that reason, all the fluids contained preservatives.

It means the slightest thing wrong with my eyes I have to see the doctor to get a prescription for preservative free eye drops. As you say they are available on prescription only, heaven knows why, no one else does!

On everything else I am with your DH, I would have sat down drawn up an item by item list of all the things that were not done properly in your appointment and gone up to the PALS unit and played merry hell over it.

hugshelp Thu 28-Nov-19 16:58:23

Thank you for all the advice. Unfortunately I can't use the hydro forte as I'm allergic to the Sodium Hyaluronate - which is in an awful lot of eye drops.
After a lot of messing around managed to get a doctors appointment for late next week - that's the soonest I can get in.
Hubby rang the hospital and explained we thtink something went wrong. So the doctor kept insisting my eyes had improved a tiny bit and trying to explain why that might be while DH was saying, but I was there, and she couldn't even read the top line, and I always go with her and she does normally does a fair bit better than that. You must have the wrong results. Then the dr was saying but I can only work with the results I'm given. Well yes we know but they're wrong! Then he eventually said 'I've got the results for October here in front of me' - but my latest appointment was 2 days ago - they did the test there and then, but he didn't seem to be using them.
I honestly think (though it's just a guess) that because I had been seen twice as an emergency due to the PVD in October he had the discharge letter written up before I went in (or at least mentally) and paid no heed whatsoever to the results on the day or to what I was saying. Which is probably why the exam took about 2 minutes while I'm normally there ages and have loads of tests. Anyway he eventually agreed to write to get me a new appointment, but it was all very vague and I honestly don't think he grasped what was going on even then.
Will try and get more help from the GP. Fingers crossed.

Sussexborn Thu 28-Nov-19 17:10:42

Contact the PALS office but remember they are funded by the hospital but at least your poor experience will be recorded. I would tell them you don’t want to see this doctor again as you have no faith in him.

Find a local forum or a forum for people with similar problems and ask for recommendations. I’ve also had one off private appointments twice because of incompetent GPs and a need to get the right information.

JohnRNIB Thu 05-Dec-19 10:08:29

I've asked our Eye Health Information Service what their thoughts were about this, and this was their reply:

"Gosh – not sure where to start!

"I think that there is a lot of miscommunication here between patient and practitioner. There are several things going on here and unfortunately dry eye is often underestimated as a cause of symptoms.

"Not all charts are the same. Charts don’t always have the same starting point, so the top of one chart may be 6/24 but that might be half way down another one. For example, my chart in the RNIB clinic at Judd Street starts at 6/60, but in private practice the default top line is 6/19. I guess what I’m saying is that they may think it was worse, but it might just have been a different starting point on the chart.

"I would suggest she speaks to her GP or high-street optometrist, and requests a referral to an ophthalmologist who specialises in dry eye or the external eye. It is important to note that dry eye is a chronic condition that will worsen when you are unwell, tired, aircon environment, central heating or dusty environments – so sometimes you need to increase the treatment and sometimes you go through better patches. In any case, once it’s better controlled you can see whether the other eye problems are also causing blur.

"It is extremely unusual to be allergic to sodium hyaluronate – usually allergies are to preservatives, not the active ingredients, so I would suggest that an external eye specialist could check this for them. There are plenty of alternatives in the old-style artificial tears, but they’re rarely prescribed because they don’t typically work so well.

"GPs sometimes don’t prescribe artificial tears now – it’s one of the medications that they advise patients that they have to buy over the counter.

"As it is so complex – might be worth just suggesting they call us so we can help her (0303 123 9999, Monday to Friday 8am to 8pm, and Saturday 9am to 1pm)! But if that’s not appropriate, then I'd suggest they request a referral to an external eye specialist, not a general ophthalmologist.

"Maybe a referral to an Eye Clinic Liaison Officer, if there’s one available at her eye clinic, would be useful, as it sounds like a communication issue as much as anything else. Also, she could really do with being referred to her local low vision service if she is struggling."

humptydumpty Thu 05-Dec-19 11:05:17

I wonder whether the dry eyes might be caused by blepharitis since dry eyes are one of the syptoms, maybe you could ask an optician about this? I use blephaclean wipes and no eye drops.