I'm starting work again! [& some advice for NHS UK patients with dry eye & MGD]

[britgirl]

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.

[Jenn1]

@Britgirl, thank you for this post and great advice.

[Súil Eile]

Thanks for posting this, it has really brightened my day That's amazing news that you're going back to work! You must be feeling thrilled about it. DES can have a huge effect on your sense if self-worth, particularly if you can't work. I'm delighted for you!

[dijon84]

That's great news for you - you must be very pleased! Thanks for your advice, it all seems very relevant. My only comment is that in some places in the UK, it seems to be slightly cheaper to get a private appointment. In the past year, I've seen a private doctor in a few different specialties in Spire Hospital Cardiff and they have all been around £110-£120 for the appointment. And the potential follow-up option to be seen on the NHS can be good. Thanks

[britgirl]

Hey Dijon84, I saw an independent ophthalmologist who claimed to specialise in dry eye and travelled down to London (hence the price). Local eye docs can be a lot cheaper. If you approach the NHS early enough you should be able to get what you need on the NHS without going down the private route. I only did this because by the time my GP agreed to refer me I was eager to get back to work and figured the £200 would be worth it if it meant I was able to start work earlier. Unfortunately this wasn't the case.


won't let me edit my post so just going to add an extra bit in reply to the messages I have received about claiming disability benefits with dry eye -

I started by contacting other people who were also on disability for DE. The focus should be the chronic pain of DE rather than the DE itself.

I first saw my GP to explain why I was going on disability and was supported fully. I have had to change GP until I found one that was supportive. At the time I applied my situation was this:

I was on tricyclic antidepressants for the DE pain. (I quickly stopped taking these as they made the DE worse but I believe the prescribed medications helped my case). I was also ordering A LOT of celluvisc & other eye drops, I'd get through 10+ vials a day (I stopped reusing vials due to constant infections). I also requested stronger painkillers (stuff only available on prescription) as ibuprofen and OTC painkillers were not strong enough.

In short - get everything you need on prescription from your GP so there is a record of you needing/taking these meds & get a prescription certificate to help with costs.

Physically my sight was disabled. The pain was so severe I could not keep my eyes open. I'd spend my days listening to the radio with eye-packs, ice packs, compresses, humidifiers etc. etc. My sight would become very blurry at times too.

Whilst on JobSeekers allowance I attended the Job centre interviews and I told the truth - that my dry eye pain was severely affecting my ability to work and I was aiming to get onto disability.

My top advice is to bug the hell out of your GP and doctors until they do something to help you. I'd rather had done this than gone on benefits and suffered for almost 2 years straight feeling helpless. Unfortunately bugging doctors is the only way to get anything done on the NHS. If you ever see a private doctor you will see the huge difference in the amount of tests and referrals they offer. On the NHS you need to actively research and ask for what you want. A good GP will do everything to help you.

Check - FULL blood work, scans (rule out neurological problems), different antibiotics, plugs, different painkillers, steroid/anti-inflammatory drops, antibiotic drops/ointments.

[icycarol]

I'm so happy for you!
You give me power to look forward !

[dijon84]

Hi - sent you a PM as my sister has anaemia and dry eye also, would really appreciate your advice to help her. Thanks, Dave

[littlemermaid]

On private UK ophthalmologists, I paid £190 at Spire this year. Last year it was ~£130. Just got a quote for first consultation from Moorfields Private for £400. Any views on this?

[robster]

Funny you should mention Moorfields private as I rang them up yesterday and almost fell off my chair when they quoted me their prices. I was told the consultation would be £200 which is about the standard rate for private Ophthalmology appointments. I was then told I would have to have a topography before I saw the consultant which would be a further £150! When I said that I'd had topography's done before and didn't feel that I needed another one I was told I had to have one before I saw the consultant.

Having spoken to a number of private hospitals in the last couple of weeks the majority of them don't require you to have any tests until after you have seen the consultant as it is the consultant who decides if you need further tests. Also spoke to the Spire in Cardiff today and there prices range from £125-£170 so i don't know if they have changed there prices but was assured that for a 30 minute appointment with their most expensive Ophthalmologist it would be £170 and they don't force you to have any tests before you see the consultant. Did that price of £400 you were quoted LM include the tests?

[littlemermaid]

Did that price of £400 you were quoted LM include the tests?

No it bloomin' didn't. Plus that would be twice because they wanted us to see 2 different consultants for different parts of the eye, and warned that all tests would be extra.

And another weird thing happened when I phoned the Portland Hospital for children and women. I asked for a service it turned out they didn't have because they only had the one general consultant for this, and the woman on the phone asked for the opportunity to 'find me the right doctor' and started recommending people in other private set-ups. She said 'do you mind if I do some research around London and phone you back?' Eww. Brokering now, presumably with commission.

I am very interested to know how the rates vary for insured/uninsured because I hear the insurance companies are capping the doc's fees. In the small print for eg Spire, we see a warning that the patient will be liable to make up the difference even if they thought they were insured. Yuck.

Love the NHS when we can access it. I wouldn't be surprised if some medics start sticking to their own NHS hospital's private business more and this is where I start when I'm looking for the right docs.

[Gerri55455]

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.[/LIST]

Hello britgirl, could you share your diet tips, please? Thanks. And how did you treat the burning? Thanks a lot. ~Gerri

[CarlyS123]

Hi britgirl, I'm in the same situation as you where basically I've been dealing with the NHS for 2 years too with my dry eyes, though mine are nowhere near as severe as yours. Can you please tell me what kind of anemia you had? I've had my b12 tested and its borderline deficient which some people (though only a few) are saying can cause dry eyes. So glad that you're on your way to a recovery
Carly