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Really long wait for investigation for glaucoma

(19 Posts)
nickEcave Fri 27-Oct-17 14:39:12

I am 43, very short sighted but with healthy eyes. I went to the opticians in June for my annual check up. They did a vision field test which showed gaps in my periphery vision and referred me to hospital for further investigation for possible glaucoma, saying it would probably take around two months for an appointment. I have been chasing the referral up with my GP since August and today I was told that I am unlikely to get a clinic appointment before mid January - 6 months after the initial referral. I have done some googling and if it is glaucoma then it looks like it is treated with eye drops but nothing can be done to restore vision already lost. Does anyone know if this 6 month delay is likely to be a problem or does glaucoma (if that is what it is) progress pretty slowly?

MissConductUS Fri 27-Oct-17 14:57:09

I would not want to wait that long.

Glaucoma Progression

Can you get it done privately?

nickEcave Fri 27-Oct-17 15:14:21

I could afford to get the test done privately but not the treatment as I assume it would be ongoing. Not sure if there is any point getting an early test done privately? If I had the test done and it showed that I already had glaucoma could I use it to speed up my NHS referral as at present I am only in the queue for an investigation and not deemed high priority but if I knew I already had the condition would I get seen for treatment sooner?

MissConductUS Fri 27-Oct-17 15:21:24

I don't know. I'm in the US and how the NHS works is a bit of a mystery to me.

Katescurios Fri 27-Oct-17 15:30:36

Ive had lots of eye problems, I've found that if you know the gp has sent the referral than the best way to get an appt is to call the hospital booking line, explain the referral has been sent and ask if they can book you a date over the phone.

I tried the waiting patiently thing and it took from Oct 2016 to march 2017 to be seen, during that time my visual acuity dropped from 6/18 to 6/48, then I got referred to specialists by which point it dropped to 6/64.

After that i started chasing referrals thorough the booking lines Culminating in eye surgery in august to reattach my retina. My vision in that eye is permanently damaged. I'm back to 6/48 and have been told its unlikely to improve.

nickEcave Fri 27-Oct-17 15:42:41

My referral is to the Moorfields eye clinic at St Georges in London and I know St George's has lots of problems at the moment. It is basically impossible to get through to the eye clinic, whether you go through the dedicated number or the main hospital number. I have rung the number numerous times over the last few months and waited on hold for 45 minutes with no one picking up. I spoke to the GP today who must have a different number to the clinic (which they won't give me) as it was they who told me they'd checked and there was a massive backlog with January being the earliest I'd get an appointment. I am debating going back to the GP and asking to be referred to a different hospital but since I've already been waiting 4 months I don't want to go back to the start of the process and another hospital might not be any quicker.

nickEcave Fri 27-Oct-17 15:47:22

Were you aware of your sight deteriorating? My general vision doesn't seem any different. I did a field of vision test and I couldn't pick up the flashing dots in one corner of one eye hence the referral. My eye pressure test was normal. I have read that glaucoma can take years to develop and don't really want to panic and start paying for private healthcare I can't afford if a 6 month delay won't make a lot of difference. On the other hand, I am only 43 and if there is a significant risk of my sight becoming seriously impaired I will find the money for private.

missyB1 Fri 27-Oct-17 15:53:55

Go and have a private consultation, your eye sight is too precious to risk. You shouldn’t have to pay and it’s very sad the state the NHS is in now, but you can’t wait that long.

LondonExpatLife Fri 27-Oct-17 15:55:18

If you can afford it, book a private appointment. Your vision is worth every penny. An appointment should be about £200. If you do have glaucoma and you wait, you could risk your vision which odds are will never be restored. Take "Katescurios" experience into mind - previous post.
I have family members who have glaucoma. With glaucoma, the main issue is controlling your eye pressure. This is normally done with daily eye drops. However, if your pressure rises too high, the only way to control it and bring it back to acceptable levels is with surgery. The increased eye pressure can damage your eye nerve and lead to permanent vision loss.
If you opt to see a specialist at a private eye clinic, they will be able to exam your eyes and take your pressure which will help determine if you have glaucoma. With glaucoma you are prone to cataracts, which you should be able to notice - cloudy eyes. If your pressure is high, your eyes will hurt too. If your eyes start to hurt or increase in pain level, that can be a sign your pressure is increasing.
DON'T WAIT! PROTECT YOUR VISION.

Number51 Fri 27-Oct-17 16:00:14

I agree with the previous poster about chasing it up with the hospital appointments line on the phone if you know the GP's referral letter has been sent. I've had a similar experience and found this was the most effective way to chivvy up an appointment. My local hospital seems happy to slot patients in over the phone if they can see a cancellation in their bookings. You might still have a wait but at least you will have an appointment in the system.

I've got glaucoma and my understanding is that the rate at which it progresses can vary widely. It depends on how high and for how long you've had increased pressures in your eyes. Did your optician test your pressures? I think hospitals have more specialised equipment and are able to measure pressures more accurately but your opticians might give you some idea.

Frankly if my eye-test showed I had already lost some peripheral vision I would want to be seen sooner rather than later. If it were me and I couldn't get a hospital appointment within say 4 months I would pay for the private test. Ongoing treatment is daily eye-drops, as you say, which are charged at normal prescription rate which works out at £8.60/month for me. Tbh I don't know how slotting back into the NHS system works for glaucoma check-ups after an initial private diagnosis but it must be doable.

It's a worry, I know. I'm only speaking from my own experience and have no professional expertise but because nothing can be done to restore vision already lost I would want peace of mind or treatment asap.

Number51 Fri 27-Oct-17 16:04:20

Sorry, slow typing! I see you've tried to chase it up on the phone.

It's encouraging your pressures were normal but I'd pay for a private test for peace of mind.

Number51 Fri 27-Oct-17 16:26:11

Incidentally I had experienced no symptoms of glaucoma at all before it was picked at a routine hospital eye clinic appointment for another eye condition. I'd had no pain, impaired vision or loss of peripheral vision in the field vision test at regular 6 monthly check ups at both the opticians and the hospital. But my pressures were suddenly up quite substantially. So it might be the case for some people that they experience symptoms which act as a warning but in my case there were none.

LondonExpatLife Fri 27-Oct-17 16:50:47

Number51 - Thanks for sharing this with others. Having family members who have been affected by the disease I know how important it is to diagnose and treat.

NickEcave -I don't how your pressure was measured at your vision field test. Puff of air? If so, not the most accurate. A proper exam, you will have a probe touch your cornea. I'm not sure if eyes are dilated for this or if they are dilated to see your nerve which should also be checked out. You should have your doctor start to take pictures and notes on the nerve so you can keep track of how it is changing over time.

nickEcave Fri 27-Oct-17 17:00:17

Thanks so much for your comments. I had the puff of air test and the field of vision test done at Boots Opticians. They did the field of vision test with the flashing squares twice and said I was missing them in one corner of one eye (I could tell during the test that I was missing things). I have never had any problems with my eyes (apart from short-sightedness) in the past. But both my parents had cataracts in their 60s (which were successfully treated) and my mum was born with small tears in her retinas so I am very conscious of being alert for problems with my eyes.

Katescurios Fri 27-Oct-17 17:03:09

I did notice vision changes, initially it was just like I had a smeary glasses lens but no amount of cleaning solved it. When I closed my left eye and tried just looking through my bad right eye I noticed general blurriness and gaps, if i look at words on a poster like 'las Vegas' I see 'la egas' and only get the s v by moving my head. If I look at a grid the lines are wavy and broken.

For me there was a build up of fluid behind my retina in the middle (macular) pushing my retina out of place. The nerve da!age caused by months of this fluid caused permanent nerve damage.

Katescurios Fri 27-Oct-17 17:05:01

Oh and I'm 34 so a long time (hopefully) ahead of me with shit vision.

Thymeout Fri 27-Oct-17 22:36:22

I was also referred for possible glaucoma by a Boot's optician. He told me that one eye was fine, but the other was borderline for referral. 'Better safe than sorry'. No details about why. I can't remember how many months, but eventually I got a letter saying I could see a specialist at a local private hospital as an NHS patient. At almost exactly 6 months after the referral, I saw the same specialist as I would have seen at my local NHS hospital, but at the private hospital and was given the all clear.

No idea of the logistics behind this, but I guess there's an NHS target, and if they can't meet it, they then outsource to private medicine. From overheard comments, I gather that this particular optician is regarded as over-zealous.

I don't know whether it was my peripheral vision that was an issue. I do find it hard to concentrate on that part of the test.

LondonExpatLife Sat 28-Oct-17 11:22:45

NHS doctors practice at private clinics too. When we have had an urgent need, we have been seen at the NHS versus or the doctor’s private practice. I will say that NHS gives one access to the same top doctors that practice at private clinics. Main difference is in the private clinics or as a private patient you have quicker access to medical care. Just this week, my son needed to see his specialist so she asked us to see her at Chelsea & Westminster Hospital. She practices privately and for the NHS. I did not realise that the hospital had a private practice inside. I had only visited NHS services there before. We needed to get an ultrasound. She made a few calls and got us in within an hour. I show up at ultrasound and am told my son is not on the schedule. I wonder if I am in the wrong area - maybe there is an ultrasound area for private insurance. I explained everything to Reception and told to wait. My son got his ultrasound and I got the feeling that private insurance is allocated slots throughout the day while NHS patients probably have to wait weeks to get one. I could tell receptionist was a bit irritated but the reality is the private insurance patients are subsidising services for NHS nowadays. A few months back I read an article about how the % of private patient income at NHS has been allowed to increase in order to bring in revenue NHS needs.
By the way, I have been to Moorsfield Clinic. Main reception feels like an airport checkin lounge. Rows and rows of seating plus long queues.

Munchyseeds Sat 28-Oct-17 18:40:47

Be aware that it is possible to have "low pressure" glaucoma...i have been using drops for a couple of years now following some strange field test results and eventual referral to hospital
Hope you get seen soon

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