Blepharitis MGD dry eye in the UK and claiming incapacity benefit

[britgirl]

Due to blepharitis / dry eye I had to quit my job 8 months ago. I had a great, well-paid, white collar job with degrees & training under my belt, but it's impossible to keep any job with this condition. I initially chose not to go on benefits and instead have been eating into my savings. I guess, I expected it to get better and to go back to work, and didn't want the hassle of going through the benefits system if it was only going to be short-term.

The main reason I did this was because doctors keep on saying 'it will get better'. Now, it's slowly becoming clear to me that this is going to be with me for a while. I wait 3 months for an NHS appointment, they prescribe something new, it doesn't work, I wait another 3 months to see them again ... and the cycle continues. Could be years before I find something that works. I have no choice but to claim incapacity benefit.

Anyone got any experience claiming for this condition? Any advice?

[NeedMyEyes]

My advice - go get LipiFlow NOW!!

Here is my advice - you have to break this cycle of clogged glands --> inflammation --> more clogged glands --> more inflammation.

Eventually all the inflammation will cause little scars in the glands that YOU CAN'T GET OUT. Then the glands will poop out and atrophy and then you will never get them back unfortunately.

I think you need to stop this disease before the inflammation causes the little scarring. I think this can take a year or 2 or whatever depending upon you. Maybe shorter - maybe just a few months.

So, before any of this happens go get Lipiflow. Then you can atleast SAVE THE GLANDS YOU STILL HAVE. That's the first thing I would do.

I know it costs alot blah blah, but you have to do this and do it now. If I could turn back the clock nine months. I would do it immediately and spend whatever it takes to get the procedure.

Then you should start IPL and as soon as possible. It isn't really THAT expensive.

I don't think the NHS will pay for this stuff for you, so you will probably need to go back, get you job suffer through a year of work and save your money for these procedure.

In my case I waited 9 months thinking "oh its JUST dry eye, it'll go away eventually". So I had to get my glands probed with needles to break up the little scars that were there in only 9 months.

Go get Lipiflow and get on top of this NOW.

Good luck

[irish eyes]

Could be years before I find something that works. I have no choice but to claim incapacity benefit.

Anyone got any experience claiming for this condition? Any advice?

Hi britgirl

Longer term, had you thought about retraining for a different job? That's what I had to do.

I can only manage part time work but it's stimulating and I can `pace' myself. The job has saved my sanity. When I applied for my current role, I ticked the disability box for the first time because I knew I would need a few minor adjustments and a bit of `understanding'.

Regarding your statement about claiming benefit, no I have not tried to do this. I would think it's very difficult with the new tougher fitness tests. You probably saw / heard on the news today that fewer claimants qualify.

[Rebecca Petris]

Hi britgirl.

I am so sorry about how much this has interfered with your life. I had to leave a high paid job many years ago because of my eyes (vision plus pain) so I know a lot about how that feels.

Could be years before I find something that works. I have no choice but to claim incapacity benefit.

Finding something that 'cures' MGD, there surely is a lot of uncertainty there. There are many conventional and 'boutique' and experimental treatments but no magic bullet and I know people who have tried the fanciest treatments, including Lipiflow and IPL, without significant benefit. I think you are being practical and realistic not to pin your hopes on any one special treatment. But, many people are able to get their life back and control symptoms without dramatically reversing the MGD by using other tools like moisture chambers or even sclerals. I hope that it won't be too long before you can get enough relief to be working again, while you continue plugging away with the NHS to get some better medical treatment.

Anyone got any experience claiming for this condition? Any advice?

I know of a few people who have gone that route in the US but I am not familiar with how this works in the UK. I hope there may be others here who have more information to share about it.

[Rebecca Petris]

Eventually all the inflammation will cause little scars in the glands that YOU CAN'T GET OUT. Then the glands will poop out and atrophy and then you will never get them back unfortunately.

I think you need to stop this disease before the inflammation causes the little scarring. I think this can take a year or 2 or whatever depending upon you. Maybe shorter - maybe just a few months.

So, before any of this happens go get Lipiflow.
Then you should start IPL and as soon as possible. It isn't really THAT expensive.

NME, a couple of comments:
(1) I have not seen medical evidence that blepharitis will lead to scarring and atrophy of the glands either with the rapidity or certainly you're suggesting. Where are you getting this? There's an awful lot of people here who have had MGD for many, many years (me included) who have not had any of that happen.
(2) Whether or not you intended it, your post makes it sound like Lipiflow and/or IPL will fix this. I hope they will help some people, but I don't know any reason to suggest it as a certainty for anyone.

[irish eyes]

Hi britgirl.


I know of a few people who have gone that route in the US but I am not familiar with how this works in the UK. I hope there may be others here who have more information to share about it.

Hi again britgirl

You may have looked at this website already but it gives details of what the process involves.

Just use the search facility on the appropriate words ie benefits, incapacity, disability etc

www.direct.gov.uk

[britgirl]

Hi britgirl

Longer term, had you thought about retraining for a different job? That's what I had to do.

I can only manage part time work but it's stimulating and I can `pace' myself. The job has saved my sanity. When I applied for my current role, I ticked the disability box for the first time because I knew I would need a few minor adjustments and a bit of `understanding'.

I can't hold down a job right now. I am constantly in pain, constantly doing things to my eyes whether it's icepacks, drops, compresses, goggles ... there is no way I can keep this up unless I find a very understanding boss.

When googling I found some old posts from members here who said they claimed benefits with this condition, but the posts were from 2007-2009 and the members and no longer active.

[irish eyes]

..When googling I found some old posts from members here who said they claimed benefits with this condition, but the posts were from 2007-2009 and the members and no longer active.

I know what this misery is like - believe me. I have an added problem of iritis but the dry eye and bleph is harder for me to manage. I used to be a teacher and it was impossible for me to perservere with that.

Although I have never made a claim, I actually spoke to a disability adviser at the Job Centre several years ago. When she explained what the assessment process would entail, I didn't go through with it because it seemed very stressful - and at the time, undignified. Rules have become more strict under the Coalition government; there are horror stories of poorly people having their claims turned down or rescinded.

There should be a helpline reference on the Direct.gov site and you could always enquire at the Citizens' Advice Bureau if there is one nearby. In the early days of my problems, I developed contacts at the RNIB and they were helpful - in a modest way - nothing major but it made me feel better.

If you haven't done this already, why not chat to your GP about what you are looking to do? They are not benefits experts but you would need supporting evidence from them. (I've had to do this lots of times - support for studying for example)

[britgirl]

just quick update guys, I have sent off my application and I have seen a different GP. The new GP is great, she said that no matter what the disease, if it is preventing me from working then I should apply, but she wants me to try more antidepressants first. As you are probably aware, the side effects of anti-depressants is dry eye, but I don't think my GP will fully support my application if I don't try (or at least, that's the impression I got). So will let you know how it goes.

I've also found 2 members in another forum who are claiming incapacity benefit in the UK due to pain caused by dry eye. Neither of them had any difficulties in the application process, the claim is due to 'chronic debilitating pain'.

[y-gwair]

Sounds like a move in the right direction. I am in the same position, I haven't been able to work since last October, I can only use a screen for limited periods and am currently looking for a new GP too.

I actually gave up my career in publishing 10 years ago as my then undiagnosed health problems, including dry eye, meant I was missing too much work (10 days, they claimed the company average was only 1), and my boss was starting to use it as a way of bullying me; despite hassling my doctors very hard, no diagnosis was forthcoming at that stage (largely because my GPs simply weren't doing the right tests, and the online information wasn't as good as it is now). I was put on anti-depressants (prozac) at that time, largely because they labelled what I had as 'somatic disorder'.

On balance, I found it helpful; it helped with the serious anxiety that had developed through all the stress over leaving my job, and was very effective at reducing the severe otalgia that had plagued me for years which ENT had been unable to treat (which I now know was caused neural damage secondary to connective tissue disease). My eyes were pretty bad then, and I don't remember the prozac making them any worse at that time. However, I'm still very angry that their first thought was to try prozac before doing the correct thyroid/rheumatological tests that might have resulted in a much earlier diagnosis of both conditions. If you agree to try it, make sure that it is on condition that your doctors continue to investigate other possible avenues.

Re. the treadmill of different doctors and promises of 'getting better', that rather depends on them having the correct diagnosis, so don't be afraid to pursue different opinions if you feel nothing is working; ask for a referral to Moorfields if you don't feel you are getting anywhere with your current specialists (at least my ophthalmologist was gracious enough to admit she was completely perplexed by my symptoms, and happy to suggest NHS referral to her colleague there). I know you have thyroid disease, possibly autoimmune in nature, and from what I know now it can be very difficult to pin down the exact cause of autoimmune eye pain, and I don't think there are very many ophthalmologists who have experience in this area.

Good luck, Elizabeth.

[irish eyes]

just quick update guys, I have sent off my application and I have seen a different GP. The new GP is great, she said that no matter what the disease, if it is preventing me from working then I should apply, but she wants me to try more antidepressants first. As you are probably aware, the side effects of anti-depressants is dry eye, but I don't think my GP will fully support my application if I don't try (or at least, that's the impression I got). So will let you know how it goes.

I've also found 2 members in another forum who are claiming incapacity benefit in the UK due to pain caused by dry eye. Neither of them had any difficulties in the application process, the claim is due to 'chronic debilitating pain'.

That's exactly what it is - chronic debilitating pain. Keep us informed with how things go; I hope it's not too stressful.

A good relationship with a GP is a valuable thing indeed.

By the way, I tried antidepressants and there was no change to my eyes or indeed my general frame of mind. If anything, they seemed to make me feel more tired - and I felt tired enough as it was. The pain felt the same and I felt as bad as before.

I tried switching prescription but nothing changed. I still think they are worth trying - even if it's just for a short time.