[Diabetes] General Chat and Support Thread

fr336 · 10-10-2014 1:23pm

CramCycle wrote: »

Just to be clear, you don't want an optician, you want an opthamologist or even an optometrist. An optician really can do nothing for you except try and give you glasses.

Oh wow really?

I thought all eye tests could flag up potential diabetes or other health issues?

CramCycle · 10-10-2014 1:26pm

fr336 wrote: »

I've been more depressed / anxious than ever

If it is Diabetes and you start treatment, alot of the things here will improve rather than get worse. A well controlled diabetic can live a far more exciting and long life than an unhealthy non diabetic.

Would worse case scenario be living a basic life, with constant limitations on ambitions, doing things differently etc?

Only if you don't get treated, if you look after yourself and listen to the health care professionals, the opposite too this should happen.

Always tired to a degree, never able to push to the full extent of life? Or would this even be the case in the best case scenario?

If it is Diabetes and your control improves, this should also help alleviate the tiredness holding you back.

Just to be clear though, the symptoms you describe cold apply to alot of things, not just Diabetes. I fully recommend what C-shore has said and go to a doctor, going to an optician is wasting time. If its not Diabetes, great, one ruled off the list, any health issues I can think of are treatable and could see a stark return to your old self. Don't waste time, make an appointment with your GP for a referral straight away.

CramCycle · 10-10-2014 1:29pm

fr336 wrote: »

Oh wow really? I thought all eye tests could flag up potential diabetes or other health issues?

Some opticians will have opthamologists working there but AFAIK an optician cannot treat or diagnose conditions or illnesses. Alot of people accidentally call opthamologists opticians. Ring where you are getting the free test and clarify is it for glasses or is it a proper screening by an opthamologist.

If they are doing screenings and are not opthamologists or optometrists, best they can do is recommend you go to a doctor.

ebbsy · 10-10-2014 1:31pm

fr336 wrote: »

Hi guys,

I'm quite fearful I may have diabetes at this point - Tbh I have been wrong in the past but the past few years I really have pushed things too far with my lifestyle. Lots and lots of weight put on in a really short space of time, short bursts of exercise but then heading straight back to the junk food and way too much of it, appalling sleep hygeine to the point of severe anxiety issues, I've basically not taken care of myself at all. I don't want to sound like I'm laying the blame for anyone having diabetes, not at all, I know it can come for all sorts of reasons with many different people but just pointing out how stupid, reckless and in a way selfish to others the past few years. I've had blurred vision and eye strain for a while now but it down to both the anxiety and sleep issues, which you might say is fair enough. But the past few weeks it's really been getting worse and seemingly worse every day - distance vision going downhill fast, reading print at even a slight distance harder and harder. It may be heightened anxiety, but I am pretty worried. Whereas the blurred vision before felt temporary for some reason, this feels like I've actually lost the vision rather than it being blurred. I am also exhausted all the time but again put that down to the sleep/anxiety issues which is a dangerous thing to do really isn't it. However as recent as a month ago simply getting more quality sleep helped a little bit so not sure I can directly correlate anything there.

I am going to an optician shortly and probably doc's very soon after but just need to talk to someone about it first really. Any insights good or bad or indifferent would be much appreciated. I am 25 years of age nearing 26 but I'm aware that this can strike at almost any time, especially when not taking good care of yourself.

Thanks for your time and feel free to ignore this post, even if I do have this as I mentioned I have been reckless and deserve it really.

With regard to the eyes, I went to the Vista clinic in Naas. they then referred me to the Eye and Ear Hospital. Over several visits I had laser and cataract treatments on both eyes. They said I would be fine, as long as I KEPT MY BLOOD SUGARS UNDER CONTROL. Which they are. I will go back for checkups every year.

What is really important is that I managed to correct my behaviour with regard to eating, before it was too late. It is treatable but its up to yourself bud.

fr336 · 10-10-2014 1:35pm

ebbsy wrote: »

With regard to the eyes, I went to the Vista clinic in Naas. they then referred me to the Eye and Ear Hospital. Over several visits I had laser and cataract treatments on both eyes. They said I would be fine, as long as I KEPT MY BLOOD SUGARS UNDER CONTROL. Which they are. I will go back for checkups every year.

What is really important is that I managed to correct my behaviour with regard to eating, before it was too late. It is treatable but its up to yourself bud.

Hugs to you and many thanks man, the more I hear about this the more terrified I am, I know nobody likes it but many people have my admiration in their strength (especially since mine is zero) Oh well live and learn..

fr336 · 10-10-2014 1:45pm

CramCycle wrote: »

If it is Diabetes and you start treatment, alot of the things here will improve rather than get worse. A well controlled diabetic can live a far more exciting and long life than an unhealthy non diabetic.

Only if you don't get treated, if you look after yourself and listen to the health care professionals, the opposite too this should happen.

If it is Diabetes and your control improves, this should also help alleviate the tiredness holding you back.

Just to be clear though, the symptoms you describe cold apply to alot of things, not just Diabetes. I fully recommend what C-shore has said and go to a doctor, going to an optician is wasting time. If its not Diabetes, great, one ruled off the list, any health issues I can think of are treatable and could see a stark return to your old self. Don't waste time, make an appointment with your GP for a referral straight away.

This is very positive to read, thanks very much. In all honesty if it wasn't for the surge in weight gain and the thinking I SHOULD have diabetes by now (obviously not through trying), I would account for all other issues due to the sleep deprivation and associated anxiety. The anxiety / depression stemmed directly from the sleep problems (not even anything specific, just not getting enough for an extended amount of time then leading into anxiety and a vicious, long-term cycle kicking off). On the one or two occasions when I have done things to get better, like exercise and better diet, the sleep after has been amazing - probably 10 out of 100, but amazing compared to the regular. So without the weight worry, I feel I can beat this easily if I can get into a proper rhythm for myself. I feel so bad writing this given what people with real illness go through but my mental energy has been ripped to shreds in recent times and I reach for comfort food so much. I guess one positive might be I'm teetotal, though if I had just some alcohol it'd probably be of benefit in terms of the stress! I suppose I come across badly here, really silly and selfish. Thanks for your help and reassurance and if and when I do get better, whatever this is, I'll definitely report back anything new I could have to offer.

CramCycle · 10-10-2014 1:47pm

fr336 wrote: »

Hugs to you and many thanks man, the more I hear about this the more terrified I am,

1st things first, the need for terror is over. You know there is an issue (could be diabetes), you have admitted it, which is the hardest step, the next is acting on it, admittedly probably the second hardest. Despite many complaints in the red tops, our health care system is excellent.

I think you will find if you build on your pro activity (posting here, following advice etc.) that each step will get easier.

fr336 · 10-10-2014 1:49pm

CramCycle wrote: »

1st things first, the need for terror is over. You know there is an issue (could be diabetes), you have admitted it, which is the hardest step, the next is acting on it, admittedly probably the second hardest. Despite many complaints in the red tops, our health care system is excellent.

I think you will find if you build on your pro activity (posting here, following advice etc.) that each step will get easier.

Ah well just to add, I'm not actually in Eire I'm in England so a bit of an imposter :P Got into Boards due to having an Irish family (I look the part) and interest in the Aviation forum.

You give great, detailed advice - thanks.

ebbsy · 10-10-2014 2:02pm

Very few people who get eye treatment go blind. It's when you d'ont look after yourself or do not take treatment is when the problems get worse.

fr336 · 10-10-2014 2:08pm

ebbsy wrote: »

Very few people who get eye treatment go blind. It's when you d'ont look after yourself or do not take treatment is when the problems get worse.

So if the vision issues were down to diabetes, they wouldn't just be an indication of general symptoms but potentially vision related damage?

ebbsy · 10-10-2014 2:19pm

fr336 wrote: »

So if the vision issues were down to diabetes, they wouldn't just be an indication of general symptoms but potentially vision related damage?

Damage occours over a long time. I am not going to guess your condition as only a expert can do that but proper treatment, diet, and check ups every year will protect your eyesight. No point in lying awake at night thinking about it, there are people out there who will help ye, but really at the end of the day its up to yourself.

fr336 · 10-10-2014 2:21pm

ebbsy wrote: »

Damage occours over a long time. I am not going to guess your condition as only a expert can do that but proper treatment, diet, and check ups every year will protect your eyesight. No point in lying awake at night thinking about it, there are people out there who will help ye, but really at the end of the day its up to yourself.

Thanks, you've all been most kind

Will see doctor very shortly...and if the all clear does come back, I might get a second third and fourth opinion and from then on, either way, I will never have an unhealthy day ever again.

Best wishes

PUMPINGPLUMBER · 10-10-2014 2:26pm

C-Shore wrote: »

This is really great to hear. It's what I've always felt was the only way that it would be solved but my knowledge is far from high.

Is there a risk of the cells failing over time though?[/QUOT

Fingers crossed

ebbsy · 10-10-2014 2:38pm

fr336 wrote: »

Thanks, you've all been most kind Will see doctor very shortly...and if the all clear does come back, I might get a second third and fourth opinion and from then on, either way, I will never have an unhealthy day ever again.

Best wishes

Its not a case of having no more unhealthy days. Just d'ont have them that often.

One opinion will do ya, and then get on with what you have.

fr336 · 10-10-2014 2:41pm

ebbsy wrote: »

Its not a case of having no more unhealthy days. Just d'ont have them that often.

One opinion will do ya, and then get on with what you have.

Nah I think I need to cut everything out, I want to live as healthily as possible for as long as possible (diabetes or not). I feel bad even asking for advice here considering many people diagnosed will have actually done things with their lives rather than getting into a mess and being a slave to binge eating.

Anyway, that's quite enough from me for one day thanks again all

cocker5 · 10-10-2014 3:22pm

http://www.telegraph.co.uk/science/science-news/11151909/Cure-for-Type-1-diabetes-imminent-after-Harvard-stem-cell-breakthrough.html

May not be of any help for type 1's now but maybe in the furure, fingers crossed x

Rucking_Fetard · 10-10-2014 9:10pm

C-Shore wrote: »

This is really great to hear. It's what I've always felt was the only way that it would be solved but my knowledge is far from high.

Is there a risk of the cells failing over time though?

At the minute, yup, (here's the paper, paywalled though), from the few articles I've read the Cells have lasted "for months" in primates, bodys immune response is still an issue but they have a plan...

Melton and others caution that there's still a lot more work to do. For one thing, they need to come up with a way to hide the cells from the immune system, especially for people with Type 1 diabetes. But they're working on that and have developed a shell to protect the cells.

"We're thinking about it as sort of like a teabag, where the tea stays inside, and the water goes in and then the dissolved tea comes out," Melton says. "And so, if you think about a teabag analogy, we would put our cells inside this teabag."

He's hoping to have Human trials going in 2 to 3 years. None of this 10 year bullsh1t.

Their's so much money in treating diabetes though. Their's lots out there that will want this slowed right down.

Good right up on it here.

Eurovisionmad · 11-10-2014 12:17am

Rucking_Fetard wrote: »

At the minute, yup, (here's the paper, paywalled though), from the few articles I've read the Cells have lasted "for months" in primates, bodys immune response is still an issue but they have a plan...

He's hoping to have Human trials going in 2 to 3 years. None of this 10 year bullsh1t.

Their's so much money in treating diabetes though. Their's lots out there that will want this slowed right down.

Good right up on it here.

I've full access to the paper due to college, got had a read of the full thing over night and I have to say it sounds very promising, it kept BG in mice under control for 4 and a half months! As you say I hope the powers that be don't try slow down this research, as there's such money behind diabetes!

Rucking_Fetard · 11-10-2014 3:30am

fr336 wrote: »

So if the vision issues were down to diabetes, they wouldn't just be an indication of general symptoms but potentially vision related damage?

Look at Flux for your computer and Twilight and Autoveilis for your phone.

Assuming you have an android.

Makes screens easier on the eyes.

fr336 · 11-10-2014 2:44pm

Rucking_Fetard wrote: »

Look at Flux for your computer and Twilight and Autoveilis for your phone.

Assuming you have an android.

Makes screens easier on the eyes.

Yeah already got Flux, thanks

Intensive Care Bear · 12-10-2014 8:28pm

Does anyone here have any views on those Nakd bars? Their website claims that they are suitable for diabetics but people on other forums seem to disagree. I'm a skinny suspected type 2 who is trying to beat a life long chocolate addiction, would these be a good substitute? The coco one actually tastes like a chocolate brownie. The rest of my diet is really good so i'm not planning on having these instead of fresh fruit and veg just instead of regular bars when i fall off the wagon.

Yakuza · 13-10-2014 12:16am

From what I've read elsewhere, if you see any food labelled "suitable for diabetics", run away (or you'll get the runs!).

CramCycle · 13-10-2014 7:53am

Alot of Diabetic speciality products (suitable for diabetics is slightly better) contain an excess of sweetners that can have a laxative effect. More worryingly (not sure if it was here or work) but I read a study linking artificial sweetners with changes to gut bacteria which increased the risk of developing type 2 Diabetes. Will try and dig it out later.

CramCycle · 13-10-2014 9:32am

http://www.nature.com/nature/journal/v514/n7521/full/nature13793.html

induces glucose intolerance by affecting your guts bacterial make up.

Harry Palmr · 13-10-2014 10:42am

There are about 30,000 Type 1s in Ireland, so if this actually works, anyone facny estimating how long it would take to complete a programme of implants?! Anyone over 40 should probably not get their hopes up.

On suitable for diabetic chocolates etc - don't bother. Just eat less of the real thing.

PUMPINGPLUMBER · 13-10-2014 7:48pm

1210m5g wrote: »

Does anyone here have any views on those Nakd bars? Their website claims that they are suitable for diabetics but people on other forums seem to disagree. I'm a skinny suspected type 2 who is trying to beat a life long chocolate addiction, would these be a good substitute? The coco one actually tastes like a chocolate brownie. The rest of my diet is really good so i'm not planning on having these instead of fresh fruit and veg just instead of regular bars when i fall off the wagon.

Living with Diabetes? Enjoy Dark Chocolate

by Dr. Julian Whitaker

Italian researchers discovered that dark chocolate significantly improves markers of insulin sensitivity. It can also decrease fasting insulin and glucose levels, as well as insulin and glucose responses to the glucose tolerance test

Dont know how true this is

CramCycle · 14-10-2014 8:45am

I imagine it was taken from here:

http://ajcn.nutrition.org/content/81/3/611.full.pdf+html

and another which covers any issues with downsides by only administering the suspected positive parts:

http://journals.cambridge.org/download.php?file=%2FBJN%2FBJN103_06%2FS0007114509992431a.pdf&code=2c77d43c3454cc85417e3dfa463249ff

uli84 · 14-10-2014 10:31am

hi guys, I'm devastated - my toddler broke my quick-serter device for Medtronic pump accidentally, Medtronic won't replace as it's ''out of warranty'', tried to insert manually last night and it all went wrong, ended up with 20.3 sugar

sorry for the rant, gonna call Diabetes clinic and ask them to show me how to insert manually in a best possible way and hoping it works out

Eurovisionmad · 14-10-2014 10:37am

uli84 wrote: »

hi guys, I'm devastated - my toddler broke my quick-serter device for Medtronic pump accidentally, Medtronic won't replace as it's ''out of warranty'', tried to insert manually last night and it all went wrong, ended up with 20.3 sugar sorry for the rant, gonna call Diabetes clinic and ask them to show me how to insert manually in a best possible way and hoping it works out

Just change to the Mio sets everyone of them come in a little disposable pod which inserts itself, bit more waste but well worth it as you don't have to remember to carry around the quickserter in case you need to change on the go!

Alanstrainor · 14-10-2014 1:51pm

uli84 wrote: »

hi guys, I'm devastated - my toddler broke my quick-serter device for Medtronic pump accidentally, Medtronic won't replace as it's ''out of warranty'', tried to insert manually last night and it all went wrong, ended up with 20.3 sugar sorry for the rant, gonna call Diabetes clinic and ask them to show me how to insert manually in a best possible way and hoping it works out

I'm based in Dublin and have a number of them, so I can give you one to keep if you're stuck. But I would have thought your consultant would be able to provide one, and I would also have thought that Medtronic would give you the bloody thing seeing how ludicrously expensive the sets are.

Drop me a PM if you like!

uli84 · 15-10-2014 10:59pm

Huge thanks to Alanstrainor above for saving me from inserting my sets manually, so happy

Alanstrainor · 17-10-2014 2:14pm

Rang Medtronic and got them to send me out a replacement Quick-Serter, it boggles the mind that they would not send these out to those without a warranty, given how cheap they are and how expensive the consumables are. But there ya go!

Rucking_Fetard · 18-10-2014 9:35pm

Scientists discover how to 'switch off' autoimmune diseases

Could speed up delivery of the stem cell break through this.

Intensive Care Bear · 27-10-2014 10:34pm

Got the results of my 2nd ever Hba1c today, i've gone from 11.2% to 6% in 3 months, i'm pretty happy with that because although i've been eating very healthy i haven't been super strict.

Dick Dastardly · 02-11-2014 10:40pm

After 32 years of type 1, I went to bed for the first time last week without taking an injection - thanks to my sparkling new pump. Only using the basics of the pump so far - no cgms, no dual/square wave etc, and still trying to find my ratios - but it's a total game changer. Never knew my daily insulin requirement would fall by 30% by going onto the pump. Didn't really appreciate that I could personalise my basal / background insulin - or the impact that would have. Never thought too much about insulin stacking before - now it's in front of me each time I eat.

So, fellow pumpers, what are your top tips for a newbie pumper like me? Where's the best place to carry it? (I've cut little holes in my pockets to thread it through - not keen on having the tubing hanging out...kids etc) Do you use a clip or a pouch - or nothing? Do you use shower bags, or just disconnect? How often does your insertion fail? (I've failed twice so far - in 5 days (!) - finger tips are now like tea bags and I've just finished my first pack of keytone strips in c. 32 years...!!) but practice can only help!

Tip 1 is I need a spare inserter from Uli84's issue above....

Thanks in advance...

PUMPINGPLUMBER · 03-11-2014 11:19am

Dick Dastardly wrote: »

After 32 years of type 1, I went to bed for the first time last week without taking an injection - thanks to my sparkling new pump. Only using the basics of the pump so far - no cgms, no dual/square wave etc, and still trying to find my ratios - but it's a total game changer. Never knew my daily insulin requirement would fall by 30% by going onto the pump. Didn't really appreciate that I could personalise my basal / background insulin - or the impact that would have. Never thought too much about insulin stacking before - now it's in front of me each time I eat.

So, fellow pumpers, what are your top tips for a newbie pumper like me? Where's the best place to carry it? (I've cut little holes in my pockets to thread it through - not keen on having the tubing hanging out...kids etc) Do you use a clip or a pouch - or nothing? Do you use shower bags, or just disconnect? How often does your insertion fail? (I've failed twice so far - in 5 days (!) - finger tips are now like tea bags and I've just finished my first pack of keytone strips in c. 32 years...!!) but practice can only help!
HI im only a few weeks ahead of ye meself and as you said BIG DIFFERENCE,them high sugars and nausea in morning GONE,I like the idea of holes in the pockets as me dogs have being pulling out of mine ,catching press handles,seat belts,kids as you said,construction sites(lots of things)my only problem is kayaking,i have to take off for a couple of hours when doing.Anybody else in the water sports?Im just using the clip as i find it solid.Yeah big reduction in Daily requirements of insulin too.i find logging on every evening to the Medtronic site and putting all your info in and uploading really helps Nurse as she can log onto your account and check all the info out,saves alot of reading stuff out over the phone

Alanstrainor · 03-11-2014 6:02pm

Dick Dastardly wrote: »

After 32 years of type 1, I went to bed for the first time last week without taking an injection - thanks to my sparkling new pump. Only using the basics of the pump so far - no cgms, no dual/square wave etc, and still trying to find my ratios - but it's a total game changer. Never knew my daily insulin requirement would fall by 30% by going onto the pump. Didn't really appreciate that I could personalise my basal / background insulin - or the impact that would have. Never thought too much about insulin stacking before - now it's in front of me each time I eat.

So, fellow pumpers, what are your top tips for a newbie pumper like me? Where's the best place to carry it? (I've cut little holes in my pockets to thread it through - not keen on having the tubing hanging out...kids etc) Do you use a clip or a pouch - or nothing? Do you use shower bags, or just disconnect? How often does your insertion fail? (I've failed twice so far - in 5 days (!) - finger tips are now like tea bags and I've just finished my first pack of keytone strips in c. 32 years...!!) but practice can only help!

Tip 1 is I need a spare inserter from Uli84's issue above....

Thanks in advance...

Call medtronic, they'll send one out to you:

01 511 1444

As for tips:

I carry mine in my pocket, just leave the cable in my pocket, never have any issues. More hassle trying to thread the cable through pants imo. I also have the clip, which is always attached. Make use of it every once in a while.

Forget shower bags, just disconnect, disconnecting for a few minutes wont have any affect. I typically wont even suspend the pump in such situations.

My sets do fail, but very irregularly, but there is a learning curve involved. Try different sets, try different locations and see what works for you. You should be able to get 3 to 4 days out of a set imo.

The pump is a game changer, the most important thing is to get your Basal rates dialed in. This will take time, so you're going to just have to persist. But a tip is to take a week and skip a single meal a day. Monday, skip breakfast; Tuesday, skip Lunch etc. Monitor your sugars during these times. If you see lows your basal is most likely too high, if you see highs the opposite is true. This is hit and miss but worth doing.

Also, the sites I use are:

Tummy/Abdomen, I find this to be generally comfortable. However I find the sets fall out/can be awkward in this location.

Top of my bum: This is my ideal location, out of the way and close to pockets. Although, my sites have gone bad in that location in the last 6 months, so I no longer use them.

Top of my legs: This is an unusual one, as there isn't that much fat in this area. However it does work, and gives you options. I use these a lot, with little problems.

Best of luck, and if you have questions please ask!

CramCycle · 03-11-2014 6:42pm

@alanstrainor: do you find switching sites affects your basal needs?

As for the shower thing. Medtronic told me the seals are only in there for swimming etc and are rarely actually needed, certainly was not a requirement for a shower, just have the cable pointed down for insertion (so when you take it out, water does not flow into it).

Alanstrainor · 03-11-2014 7:04pm

CramCycle wrote: »

@alanstrainor: do you find switching sites affects your basal needs?

As for the shower thing. Medtronic told me the seals are only in there for swimming etc and are rarely actually needed, certainly was not a requirement for a shower, just have the cable pointed down for insertion (so when you take it out, water does not flow into it).

Yes I find I do actually. My abdomen is worse than the others. And I'd say my legs are the best. But the margain is generally not much, so I tend not to adjust basal to compensate.

5live · 04-11-2014 4:49pm

Has anybody registered for the retina screening programme?

I have been trying to register for days now and the number rings engaged all the time

C-Shore · 04-11-2014 5:00pm

5live wrote: »

Has anybody registered for the retina screening programme?

I have been trying to register for days now and the number rings engaged all the time

I haven't registered over the phone, I was refered for it from the clinic along with all other patients.

It's a relatively small operation, so not many people manning the phones - but I'm sure someone will answer.

Were you in a clinic already? I thought all patients were being transferred over and you were automatically sent a letter. I think that's what happened with me anyway.

CramCycle · 04-11-2014 5:03pm

They sent one to my home address from my youth so I rang them up and they said that they could only deal with Longford. The lady did say she put a note on it to say I lived in Dublin and that I could not attend Longford. 4 weeks later I received an appointment letter for Longford. Rang again and they said that they would transfer me to Dublin. Still no word since then, about 2 months ago.

5live · 04-11-2014 5:11pm

C-Shore wrote: »

I haven't registered over the phone, I was refered for it from the clinic along with all other patients.

It's a relatively small operation, so not many people manning the phones - but I'm sure someone will answer.

Were you in a clinic already? I thought all patients were being transferred over and you were automatically sent a letter. I think that's what happened with me anyway.

Not with any clinic for years. They kept booking me in for days I had told them I couldn't make so I took the hint:-)

5live · 04-11-2014 5:19pm

CramCycle wrote: »

They sent one to my home address from my youth so I rang them up and they said that they could only deal with Longford. The lady did say she put a note on it to say I lived in Dublin and that I could not attend Longford. 4 weeks later I received an appointment letter for Longford. Rang again and they said that they would transfer me to Dublin. Still no word since then, about 2 months ago.

I'm still at the same address so that isn't it. I rang at the start to register and was told to ring my doctor to register but they told me to ring the freephone number again. I left it run for a while to get the whole thing sorted. Tried ringing since last Monday and constantly engaged.

I just rang my doctor to see if they had me registered but was told to ring the freephone number. Which is still engaged!

C-Shore · 04-11-2014 5:22pm

The whole thing either has teething issues, or is just already doomed to be horribly run.

My experience with the retina screening in the last 10 months has been as follows:

October 2013: Regular annual appointment in the hospital, informed that it's moving to a new screening program and I'll receive a letter
February 2014: Receive a letter to say I need to go see the consultant about my results and changes to my eye from the hospital scan in October. Go along to the eye clinic in the hospital, get a manual scan by someone that isn't the consultant and told everything is fine, no concerning changes and I should only worry about aneurisms on the macular. The girl doing the scan wasn't sure why I was even there, either she didn't see my records, or didn't see anything of note in the records.
June 2014: After receiving a letter from the Retina Screening Program, saying I have an appointment in June, I go to that scan and do the usual scan
August 2014: Receive letter to say I need to go see the consultant about my results from the scan in June and changes in my eye from the scan in June
September 2014: Go to see consultant in the Mater, get another scan with the machine this time - told I'll hear back in a few weeks. Still haven't seen the consultant - I reckon the consultant is actually Mrs. Columbo.

So as of November 2014, I haven't a clue if I'm going blind or what. In the space of about 8 months, I think I'm ok, but still not sure because there may have been changes in the few months since the first scan.

So there you go. That's my experience of the Retina Screening so far. 4 appointments in a year and still haven't a clue if I should buy a decent pair of sunglasses and a white stick.

Toto Wolfcastle · 04-11-2014 5:26pm

You could try contacting them by email or using the form on their site. My husband got through no problem but that was a few months ago.

5live · 04-11-2014 5:29pm

C-Shore wrote: »

The whole thing either has teething issues, or is just already doomed to be horribly run.

My experience with the retina screening in the last 10 months has been as follows:
October 2013: Regular annual appointment in the hospital, informed that it's moving to a new screening program and I'll receive a letter

February 2014: Receive a letter to say I need to go see the consultant about my results and changes to my eye from the hospital scan in October. Go along to the eye clinic in the hospital, get a manual scan by someone that isn't the consultant and told everything is fine, no concerning changes and I should only worry about aneurisms on the macular. The girl doing the scan wasn't sure why I was even there, either she didn't see my records, or didn't see anything of note in the records.

June 2014: After receiving a letter from the Retina Screening Program, saying I have an appointment in June, I go to that scan and do the usual scan

August 2014: Receive letter to say I need to go see the consultant about my results from the scan in June and changes in my eye from the scan in June

September 2014: Go to see consultant in the Mater, get another scan with the machine this time - told I'll hear back in a few weeks. Still haven't seen the consultant - I reckon the consultant is actually Mrs. Columbo.

So as of November 2014, I haven't a clue if I'm going blind or what. In the space of about 8 months, I think I'm ok, but still not sure because there may have been changes in the few months since the first scan.

So there you go. That's my experience of the Retina Screening so far. 4 appointments in a year and still haven't a clue if I should buy a decent pair of sunglasses and a white stick.

So, it's a success, you say?:-)

graflynn · 04-11-2014 6:52pm

5live wrote: »

Has anybody registered for the retina screening programme?

I have been trying to register for days now and the number rings engaged all the time

I checked to see if I was on the register about a year ago using this number Freephone 1800 45 45 55 and choose option 1. It shouldn't ring engaged because it's the main switch board for some of the cancer screening services also and you get one of those recorded options menu.

I got my invitation to consent to be screened about a month ago and then I got my letter of appointment today for two weeks time.

Double check the number you are dialling.

graflynn · 04-11-2014 7:02pm

5live wrote: »

I'm still at the same address so that isn't it. I rang at the start to register and was told to ring my doctor to register but they told me to ring the freephone number again. I left it run for a while to get the whole thing sorted. Tried ringing since last Monday and constantly engaged.

I just rang my doctor to see if they had me registered but was told to ring the freephone number. Which is still engaged!

Your gp or consultant is the one who has to put you on the register - this definitely wasn't clear when they began the scheme and a lot of medical professionals didn't realise that they had to do it.

So when you call the number they have been advertising you are just checking to see if you are on the register and if you are on the register you can check your details are correct.

If you are not on the register you have to go back to either your GP or consultant, and I think they have informed the medical professionals at this point, to do it.

I've been on to them a couple of times in the last few weeks; once to give my consent, and once to rearrange my appointment and I didn't have any problems getting through.

Is the telephone number you are ringing Freephone: 1800 45 45 55, and choose option 1?

5live · 04-11-2014 8:11pm

graflynn wrote: »

I checked to see if I was on the register about a year ago using this number Freephone 1800 45 45 55 and choose option 1. It shouldn't ring engaged because it's the main switch board for some of the cancer screening services also and you get one of those recorded options menu.

I got my invitation to consent to be screened about a month ago and then I got my letter of appointment today for two weeks time.

Double check the number you are dialling.

Yeah, that's the number i am ringing.

graflynn wrote: »

Your gp or consultant is the one who has to put you on the register - this definitely wasn't clear when they began the scheme and a lot of medical professionals didn't realise that they had to do it.

So when you call the number they have been advertising you are just checking to see if you are on the register and if you are on the register you can check your details are correct.

If you are not on the register you have to go back to either your GP or consultant, and I think they have informed the medical professionals at this point, to do it.

I've been on to them a couple of times in the last few weeks; once to give my consent, and once to rearrange my appointment and I didn't have any problems getting through.

Is the telephone number you are ringing Freephone: 1800 45 45 55, and choose option 1?

When i rang the doc this evening, his secretary told me i had to register myself and called out the number. Then i told her i thought they were supposed to register me and she said she would ring me back. She did about 10 minutes later and told me the number was engaged for her too and i had to register myself anyway

[Diabetes] General Chat and Support Thread

Comments