Update and background - I've been suffering with dry eye (meibomian gland dysfunction) for almost 2 years and am finally getting back to work! I have seen a vast improvement since I started treating my anaemia. I would say I am 80% better than I was 2 years ago. Although I still have 'bad' days and my eyes have gotten slightly more red and bloodshot, the pain had reduced a lot, which was my main concern.
I have learnt a lot about the NHS in the last 2 years and have been getting messages from UK patients asking for advice so I am posting a list of tips for other UK NHS patients with dry eye or meibomian gland dysfunction.
- Symptoms just started? The best thing to do is to see your GP and ask for a referral to an NHS ophthalmologist as soon as possible. GPs like to avoid referring and will likely say 'try these drops and come back if it doesn't work.' So try to get the ball rolling NOW because a referral could take months. Don't wait around. If your GP takes too long to refer you - get a new GP and/or go to a walk-in-centre.
- If you want to be seen sooner by a specialist, you can get a private appointment with an ophthalmologist - get a referral from an NHS GP even if you go private (so you can follow up on the NHS). It will cost around £200-300.
- You will find the NHS often lumps you with junior docs who don't know what they are talking about. Remember there is usually a senior doctor around supervising them. Research your treatment options and ask many questions. Plan a list of questions to ask. 'Could this be the cause?' 'Could taking this help?' 'Are there any alternatives to this treatment?'
- Get all the drops and lubricants you need on prescription. Get a prescription certificate if it works out cheaper. Your GP will notice when you are taking prescriptions. I spent the first 9 months buying my eye drops over the counter. I spent so much money and my GP had no idea how much I was suffering that whole time.
- Make sure the doctors fully understand the severity of your condition. Most inexperienced ophthalmologists/GPs do not understand. It's not their fault, they just don't have experience with DE patients. Tell them exactly how much it affects you, they are not mind readers. They won't know unless you tell them.
- Get tested for all other possible health conditions. There may be an underlying cause. In my case hypothyroidism & anaemia made the condition much much worse. Get full blood tests in case you're deficient in something. Get a scan in case you have neurological problems. Don't be afraid to ask straight out for something. Once I moved to a good GP I was never refused any of the tests I asked for.
- I was not taken as seriously until I applied for incapacity (disability) benefit. It was not until this point when the doctors suddenly decided to give me blood tests and fit punctal plugs. Remember YOU have the responsibility of making sure the doctors are aware how badly this is affecting you. If you can't work, don't be ashamed to claim benefits for it.
- It will get better. Don't lose hope.