Diabetic retinopathy/employment

moorby86 said:

Hi, I’ve been type 1 diabetic for 33 years and over the last 4 years have had diabetic retinopathy/bleeds on both eyes. My control is probably as good as it’s ever been (7.5 my last hba1c) and I’ve been told the length of time I’ve been diabetic also plays a role. I’ve had lots of laser on both eyes to the point the doctors won’t do any more, as the bleed un my left eye didn’t clean I had surgery to remove the gel. I have had ‘floaters’ in my right eye for around 4 years and get bleeds now and again, currently I have a bleed and I’m going to push for surgery on the eye. The most frustrating thing at the moment is the problems I am having with my employer, I have always been asked to make the time up for the appointments but that is becoming increasingly difficult given my life and that I’ve been told I need to go to hospital that are pretty far from my home, does anyone have any advice on how to handle this with my employer or where to best get advice, thanks

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Hi @moorby86 ,

I'm not sure what you do.. (Job wise.)
I can only share how I handle it..
I had a fair few appointments for Macula oedema over a period of years..
How I handled the "absences" with employers. I keep them informed breaking down what it is that's needs doing & the consiquences of, if not. I did the same with collegues too. & found them willing to support.
I do offer to make the time up & be flexible on the time as much as possible to accommodate.
It's just one of those "things." & to be fair there are times I find myself covering a member of the team caught in some sort of situation where they have difficulty attending?

I'm also in transparency with the "gaffer" willing to show apoinment letters & explain the "logistics?"
Especially having to use a bus service getting to & from after the effects of the treatment procedure.
Most folk have had to wait in a hospital at some point for whatever reason, so they should empathise too..
To be fair. I could be flashing a flyer for a local gig under their nose? They tend to embarasingly wave it off saying "no need."
On the show & tell...

I hope this helps?

If you are based in the UK and need support, I recommend the Diabetes UK Advocacy service.

moorby86 said:

I guess I’ve done quite a lot anyway, pushed for an occupational health meeting, got a letter from my gp and have really gone into lots of details with the manager. The most frustrating thing has been the lack of empathy and I’ve been clear in saying to them that i won’t always require any additional time off but given that the last time I was at the hospital they said I might need weekly appointments for a while I thought I’d be pro active and let work know and ask for a bit of leeway. I’ve never not made time back and as a result of me asking haven’t been met with any sympathy or understanding and the manager had suggested looking for other roles in the company, which has made me feel pretty useless. Fingers crossed the meeting with occupational health goes well but I wanted to draw on other people’s experiences so thank you

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I had bleeds, lasering and finally a bilateral vitrectomy at Moorfields 18 years ago (diabetic of about 22 yeas duration at that point and they do say this is when damage can show)/
The op was successful in that I am not blind but I have lost some sight (cannot drive but that got me into fitness career so its okay for me!).
My advice would be to check the process for surgery so that you work with your OH team to manage a likely absence from work. Hopefully it won't come to that but you seem highly organised and practical about this and so I'd recommend getting this knowledge.
Your direct line manager doesn't understand your condition and how critical it is to your sight that you have your treatments. If your employer were to penalise you by not making reasonable adjustments for your condition then your manage would be acting in a discriminatory manner IMO but best to get OH on your side and find a way forward and compromise about making up the time. I hope you can find a way forward and as others have suggested you could get some advice or advocacy from Diabetes UK.
So 18 years ago, I had a general anaesthetic and went home physically well but instructed that in order to make the op successful I had to lie prone to retain the gas cylinders that were inserted. I was allowed some breaks from that position but obviously I could not do my office job nor look after my 1 year old. I wasn't in any pain so it was frustrating to have to do this for some weeks but I do remember seeing someone who hadn't complied with the instructions and had undone the surgeon's work.
My employer was great and very supportive throughout but this was a small business so he had a little more flexibility to be generous. Do check your company's sick pay policy too.

moorby86 said:

I guess I’ve done quite a lot anyway, pushed for an occupational health meeting, got a letter from my gp and have really gone into lots of details with the manager. The most frustrating thing has been the lack of empathy and I’ve been clear in saying to them that i won’t always require any additional time off but given that the last time I was at the hospital they said I might need weekly appointments for a while I thought I’d be pro active and let work know and ask for a bit of leeway. I’ve never not made time back and as a result of me asking haven’t been met with any sympathy or understanding and the manager had suggested looking for other roles in the company, which has made me feel pretty useless. Fingers crossed the meeting with occupational health goes well but I wanted to draw on other people’s experiences so thank you

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Hi,

It does sound like you have un-empathic managment with no inclination on a mutual compromise.
My lot knew the alternative was loss of sight & that these appointments (I can't dictate the timing chosen.) had to be grabbed with both hands. I even said the after effects leave me blurred with a dark spot (or "muppet eyes.") which would make me pretty useless in my role on immediate return to work.? (Production engineering at the time. Pretty detailed work.)

They were cool.. Even asking how it went the following day?

I have to admit, the only absense I take is & was for the eyes. (the usual yearly D check up too & anual leave..)

It really sounds like where you are, there is not a lot of value given to the work force in general.
Some of the places I've worked have been more than reasonable with support in a culture that even covers a collegue with the odd "hangover?"
(Let alone some of the poor chaps diagnosed with something serious.)

I wish you all the best.

Hi,
I understand the frustration with this. Has your hospital got a local ophthalmology liaison officer? The lady at my hospital is great and willing to help with any problems you face in employment etc relating to eye conditions.

Glad you got to speak to somebody who has some idea what you are talking about. It makes a big difference in this sort of situation when they have some personal knowledge of diabetes.

moorby86 said:

Hi, I’ve been type 1 diabetic for 33 years and over the last 4 years have had diabetic retinopathy/bleeds on both eyes. My control is probably as good as it’s ever been (7.5 my last hba1c) and I’ve been told the length of time I’ve been diabetic also plays a role. I’ve had lots of laser on both eyes to the point the doctors won’t do any more, as the bleed un my left eye didn’t clean I had surgery to remove the gel. I have had ‘floaters’ in my right eye for around 4 years and get bleeds now and again, currently I have a bleed and I’m going to push for surgery on the eye. The most frustrating thing at the moment is the problems I am having with my employer, I have always been asked to make the time up for the appointments but that is becoming increasingly difficult given my life and that I’ve been told I need to go to hospital that are pretty far from my home, does anyone have any advice on how to handle this with my employer or where to best get advice, thanks

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Hi,
A bit off tangent. But due to you having had so much laser to the point they weren't able to fit anymore in... did they not offer ANTI VGEF injections?