Another media slam...

[catapillar]

@jekyll79 your pessimism about my career prospects is slightly distressing! Luckily I'm confident that my employer takes their responsibilities under the equality act seriously. No they are not uncompetitive, they are a top 20 firm & no 1 in the field that I work in. I am certainly not coasting & if someone sees something I'm doing and decides to make a sweeping generalisation about all diabetics, I'm afraid that's their own discriminatory attitude & not my responsibility. The only way I can prove that wrong is by continuing to what works for me, which is work my ass off and ask for help when needed, the equality act protections just slightly broadens the scope of the help that might be available. I'm grateful for that.

 

[jekyll79]

@catapillar you are not really addressing the very valid points I made. Instead I see this as a somewhat political response to draw attention away from those points and point towards a perceived angle I was not arguing. The use of "you" was a general one and not meant to be pointed at you specifically. Maybe you will have got that from the comment in brackets below the bullet pointed list.

I said I wasn't against the Equality Act in its entirety, I pointed out where I found flaws. Yes, diabetics do take the ****. Any diabetic that claims they cannot be flexible, that claims they need time off for any hypo but the very severest (and I mean tongue chewing bad), that makes their employer/colleagues change things for them, etc, etc, is taking the ****. I have heard stories of diabetics refusing to leave their blood testing kits in another room (meters away) when they are in secure locations. That is ridiculous and anyone that is reasonable knows that. It is people like that who create problems.

If you have only been diagnosed since you have been working, then you won't have seen the gradual changes creeping in which inhibit (or will inhibit) normal life. I have lived my whole life with this condition and have seen changes brought in because of a combination of the needy wanting more and the legal system protecting society/businesses from litigation. Those changes are bad and they are caused by the very vocal lowest common denominator.

 

[Robinredbreast]

@catapillar you are not really addressing the very valid points I made. Instead I see this as a somewhat political response to draw attention away from those points and point towards a perceived angle I was not arguing. The use of "you" was a general one and not meant to be pointed at you specifically. Maybe you will have got that from the comment in brackets below the bullet pointed list.

I said I wasn't against the Equality Act in its entirety, I pointed out where I found flaws. Yes, diabetics do take the ****. Any diabetic that claims they cannot be flexible, that claims they need time off for any hypo but the very severest (and I mean tongue chewing bad), that makes their employer/colleagues change things for them, etc, etc, is taking the ****. I have heard stories of diabetics refusing to leave their blood testing kits in another room (meters away) when they are in secure locations. That is ridiculous and anyone that is reasonable knows that. It is people like that who create problems.

If you have only been diagnosed since you have been working, then you won't have seen the gradual changes creeping in which inhibit (or will inhibit) normal life. I have lived my whole life with this condition and have seen changes brought in because of a combination of the needy wanting more and the legal system protecting society/businesses from litigation. Those changes are bad and they are caused by the very vocal lowest common denominator.

You have some good points and so has catapillar, I have enjoyed reading both of your many posts. I highlighted a small section, as tongue chewing is not just the 'severest', as any type 1 in a state of collapse and unresponsive, with a very low reading, especially zero, would need urgent medical help to save their life.

 

[jekyll79]

@Robinredbreast when I said "tongue chewing" I meant full on, out of it fit. Unless I am unconscious, I am able to deal with my hypos no matter how low I am. I get into a state of single mindedness where I just seek out sugar of any kind. The lowest I can remember testing and treating myself at was around 1.0. 30 mins later I was fine and fully functioning. I went through a phase where my blood sugar would drop significantly during intense exercise. I would go on a tennis court at 7 and come off at 2.5. Thankfully I have resolved that, but the only issue it really caused me was that I was consuming far too many calories bringing myself back up. No issues with writing off the rest of the day. Maybe I am lucky in that I can bounce back quickly, I don't know. But in all situations where I have had a hypo that I have treated, I have never needed to take time out of whatever I have been doing, other than the 30 mins it might take to get me going again. When you read on forums about people claiming that a blood result of 2.5 meant they needed a day off work, I can't help but think "really?". If there was a winning lottery ticket at the end of a 1km run, I am sure those people would be able to do that run after a bottle of lucozade.

 

[serenity648]

@Robinredbreast when I said "tongue chewing" I meant full on, out of it fit. Unless I am unconscious, I am able to deal with my hypos no matter how low I am. I get into a state of single mindedness where I just seek out sugar of any kind. The lowest I can remember testing and treating myself at was around 1.0. 30 mins later I was fine and fully functioning. I went through a phase where my blood sugar would drop significantly during intense exercise. I would go on a tennis court at 7 and come off at 2.5. Thankfully I have resolved that, but the only issue it really caused me was that I was consuming far too many calories bringing myself back up. No issues with writing off the rest of the day. Maybe I am lucky in that I can bounce back quickly, I don't know. But in all situations where I have had a hypo that I have treated, I have never needed to take time out of whatever I have been doing, other than the 30 mins it might take to get me going again. When you read on forums about people claiming that a blood result of 2.5 meant they needed a day off work, I can't help but think "really?". If there was a winning lottery ticket at the end of a 1km run, I am sure those people would be able to do that run after a bottle of lucozade.

We are all different. I do find your tone a bit adversarial. Your last sentence in particular sound like you think some people are exaggerating and using their condition to appear helpless and sicker than they are. My friends with type 1 struggle their hardest, every day, and so I am taken aback by your assertion that they could do things if the reward was high enough.

However, I am not sure if you just say things to provoke defensive comments, so wont say anymore to you on this subject

 

[catapillar]

@jekyll79 sorry, I wasn't aware we were doing a formal debate with point scoring! I was just expressing my thoughts and I wasn't trying to undermine yours. You have perfectly valid opinions based upon your experiences and it's not my intention to try to change your your mind or win a battle, just to express my own view point (obviously based upon my own, different, experiences). I though we were just having a chat... albeit via forum

 

[tim2000s]

I have to say @jekyll79 that your experience is work does not reflect anything that I've done or experienced. Whilst I agreed with your earlier post, I've had nobody stop me from doing anything, for any reason. I've also seen only one other t1 in my line of work for 20 years. I'm sure there are more but I haven't seen them.

Maybe it's simply that things aren't quite as bad as you've described!

 

[jekyll79]

I say it @serenity648 because I know it is true. 30 years a type 1 and I am no super hero. I believe it was Plato who said "No one is more hated than he who speaks the truth.". This certainly seems to be true from my perspective. I am not denying that type 1 can be a pain, but it is manageable. When I was diagnosed nobody had pumps, cgms, etc, etc, and kids still lived. I did. Kids carried on like kids. Mothers didn't need to wake them on the hour, every hour for blood tests, we just got on with it. Now, every kid with diabetes is wrapped up in cotton wool, they have the best of the best tech (much better than most adults who have lived with it for far longer...and done more damage to their bodies), and their parents are allegedly having to work so much harder than mine did (the emphasis strongly on the word "allegedly"). I get frustrated because this prevailing attitude is damaging for anyone who doesn't want to play the "woe is me" game. It is also absolutely terrible for diabetic kids who are led to believe that they are somehow "broken" from an early age. Many parents don't do this (and I salute them for that), but there are a lot who do. Those who do are facilitated by the attitudes I have been commenting on here.

 

[Mep]

I think the premise of diabetics are just trying to "take the ****" and we're just forming a society that is over-protective in regard to disabilities is just merely an assumption. Personally I view laws put in place to protect us a good thing. As I stated earlier in this thread that the likelihood of you knowing why a person is needing help for whatever reason is next to nil unless you personally know them. Even if you personally know them you may not know everything. For example I haven't disclosed to my own family all of my medical conditions as some are rather private and I only share on health forums like this about what I actually am dealing with medically. Do I look like I have all these conditions? No. You wouldn't be able to tell looking at me about what I deal with. I'd say the same applies to any diabetic you may know that you assume are taking the ****. They're most likely not. If they have a hypo they may recover completely different to you. You don't know what other medications they may be on either. I had a drug I was on once that exacerbated my hypo symptoms so my hypo symptom phase lasted for hours. My docs had to quickly pull me off that drug especially when I thought my head was detached from my shoulders. Oh yes I went to work on a day I had that too and I shouldn't have been there period. I was off my face with hypo symptoms and couldn't put two words together. I may have not been unconscious, but I definitely wasn't fit for work. I guess I take the optimistic view and I think people should have rights and be treated respectfully. My employer has been very accommodating to my conditions. They've gone out of their way to make sure I can still work within my limitations. They've put me through a lot though in the process.... making sure I'm sick in their mind I suppose.

 

[tim2000s]

Whilst the topic has somewhat moved away from the original point about the media, is that also to blame for the extreme monitoring that takes place with a lot of kids now or is it a result of significant changes to the treatment regime and available monitoring technologies? Would our parents have tried to monitor to this level if they were able?

 

[Robinredbreast]

@Robinredbreast when I said "tongue chewing" I meant full on, out of it fit. Unless I am unconscious, I am able to deal with my hypos no matter how low I am. I get into a state of single mindedness where I just seek out sugar of any kind. The lowest I can remember testing and treating myself at was around 1.0. 30 mins later I was fine and fully functioning. I went through a phase where my blood sugar would drop significantly during intense exercise. I would go on a tennis court at 7 and come off at 2.5. Thankfully I have resolved that, but the only issue it really caused me was that I was consuming far too many calories bringing myself back up. No issues with writing off the rest of the day. Maybe I am lucky in that I can bounce back quickly, I don't know. But in all situations where I have had a hypo that I have treated, I have never needed to take time out of whatever I have been doing, other than the 30 mins it might take to get me going again. When you read on forums about people claiming that a blood result of 2.5 meant they needed a day off work, I can't help but think "really?". If there was a winning lottery ticket at the end of a 1km run, I am sure those people would be able to do that run after a bottle of lucozade.

I did say unconscious and unresponsive,, with a very very low reading, as well your quote, they are both severe severe and needs urgent medical help immediately. I carry on regardless if hypo is on the lowest side. I treat, rest a little ( sometimes, I haven't been able to do that within my previous work environment) test again and hopefully BS has gone up. I honestly have never had a day off because of a 2. + reading.
You do seem to be constantly on an attack mode, which doesn't help when posting on a medical forum and that is not a negative statement to you, just an observation.
Regards.

 

[jekyll79]

I get exasperated with very simple points being misinterpreted or purposefully twisted @Robinredbreast. I know I can be blunt, but having to explain my points in different ways to people who can't or don't want to see them for what they are, does not make me inclined to soften my tone (that was not aimed at you....see, I feel I have to explicitly cover all bases). My points have never been that "ALL diabetics" are at fault, they have been that "SOME diabetics" are. The examples I gave are examples I have either seen myself or read about on forums like these.

Are you aware that some diabetics in the UK actually claim ""Hypo kits" on their free prescriptions? A "Hypo kit" is essentially very expensive sugar (this company sell them for a massive profit). It is NOT needed and a waste of money. I guess I get exasperated because I don't take more than I need (I only use my free prescription for my insulin and blood testing gear....everything else I pay for), yet I see people who get a lot out of the system by essentially making more of their problems than they need to. Why? Because if they can't handle the standard treatment, they get a pump. A brief example. I want a CGM. I have offered to part fund a CGM. I do not have a pump. A CGM would be of comparable cost to a pump (I actually believe they are cheaper). I have been told I cannot part fund one and I am not eligible. But, if I had a few issues recognising hypos, I could get one. If I do that (lie), I stand to lose my driving licence. Yes, a diabetic specialist nurse told me that. To get a device that would potentially massively improve my chances of not experiencing complications, I cannot part fund with the NHS and tell the truth, but I can lie, have a few engineered hypos and get a CGM........and lose my driving licence since I will be lying and saying that I am hypo unaware. How fair is that? When you have experienced that and then see people talking about how diabetes is so hard in one breath, followed by how much tech they have in their next, it becomes unfathomably frustrating. Our system (UK) rewards failure and that encourages failure (whether it be because they are not trying or because they are engineering it). With all of this failure around (how did so many diabetic kids manage when I was diagnosed?!?) it gets seen by actuaries and that is when everything changes

 

[Robinredbreast]

I get exasperated with very simple points being misinterpreted or purposefully twisted @Robinredbreast. I know I can be blunt, but having to explain my points in different ways to people who can't or don't want to see them for what they are, does not make me inclined to soften my tone (that was not aimed at you....see, I feel I have to explicitly cover all bases). My points have never been that "ALL diabetics" are at fault, they have been that "SOME diabetics" are. The examples I gave are examples I have either seen myself or read about on forums like these.

Are you aware that some diabetics in the UK actually claim ""Hypo kits" on their free prescriptions? A "Hypo kit" is essentially very expensive sugar (this company sell them for a massive profit). It is NOT needed and a waste of money. I guess I get exasperated because I don't take more than I need (I only use my free prescription for my insulin and blood testing gear....everything else I pay for), yet I see people who get a lot out of the system by essentially making more of their problems than they need to. Why? Because if they can't handle the standard treatment, they get a pump. A brief example. I want a CGM. I have offered to part fund a CGM. I do not have a pump. A CGM would be of comparable cost to a pump (I actually believe they are cheaper). I have been told I cannot part fund one and I am not eligible. But, if I had a few issues recognising hypos, I could get one. If I do that (lie), I stand to lose my driving licence. Yes, a diabetic specialist nurse told me that. To get a device that would potentially massively improve my chances of not experiencing complications, I cannot part fund with the NHS and tell the truth, but I can lie, have a few engineered hypos and get a CGM........and lose my driving licence since I will be lying and saying that I am hypo unaware. How fair is that? When you have experienced that and then see people talking about how diabetes is so hard in one breath, followed by how much tech they have in their next, it becomes unfathomably frustrating. Our system (UK) rewards failure and that encourages failure (whether it be because they are not trying or because they are engineering it). With all of this failure around (how did so many diabetic kids manage when I was diagnosed?!?) it gets seen by actuaries and that is when everything changes

tbh I think we are all quite exasperated at times. Also , to be clear, I have not misinterpreted or purposely twisted posts.

 

[serenity648]

is there something wrong with having a pump for diabetes? My friend aforementioned has a pump. She has been type one for many years, and had a pump in the past few years. One of her sons, who became type 1 nearly 5 years ago, has a pump. The other type 1 son, who became type 1 a few months ago, is waiting for a pump. It doesnt seem, from what i observe and she says, that having a pump is effortless.

I am asking for info as i do not know about this subject really and, as she is in hospital right now (unrelated stuff) I dont want to bother her by asking.

 

[Robinredbreast]

is there something wrong with having a pump for diabetes? My friend aforementioned has a pump. She has been type one for many years, and had a pump in the past few years. One of her sons, who became type 1 nearly 5 years ago, has a pump. The other type 1 son, who became type 1 a few months ago, is waiting for a pump. It doesnt seem, from what i observe and she says, that having a pump is effortless.

I am asking for info as i do not know about this subject really and, as she is in hospital right now (unrelated stuff) I dont want to bother her by asking.

A pump was mentioned to me about 2 years ago now, but tbh I am okay with the MDI. Now, whether I would of been given a pump, if I had pursued this, I don't know.

 

[jekyll79]

There is nothing wrong with having a pump @serenity648. But when technology like that is in short supply, it becomes a bit of a competition to get it. Kids are first and they don't generally have to fight too much to get them. Adults who struggle are next. If you are an adult that just wants one and don't show evidence of struggling, you don't stand much of a chance unless you have a very supportive doctor with a budget.

There are several factors that have created the situation we have now. Money is key, or mismanagement of money is key. For example, if only insulin and blood testing kit were covered by the free prescriptions, how much would that save the NHS? How many others would then get this better (long term issue preventing) tech?

 

[Robinredbreast]

I never mentioned a pump, it was my diabetes consultant and he was happy to explain how it works also talking to people who alreadybhave a pump and his final words were, a pump is only as good as the person using it, it wont work miracles.

 

[catapillar]

if I had a few issues recognising hypos, I could get one. If I do that (lie), I stand to lose my driving licence. Yes, a diabetic specialist nurse told me that.

I think your DSN is probably mistaken. The decision for recommendation for an individual funding request for cgm would be your consultants. The decision as to whether the funding gets granted is your CCG.

I'm completely hypo unaware (& have surrendered my driving licence accordingly). I have frequent night time hypos & have been told I'm at high risk of dead in bed syndrome I have been told I will not be considered for CGM funding until all other routes have been tried - so I need to try a pump first, which there are hoops to jump through to get. So I have self funded a dexcom. This is not intended to be a woe is me illustration, just an illustration that we all have a cross to bear

I haven't seen any hatred directed towards you, or twisting posts etc. People are just discussing the interesting points you have raised. But your posts do seem to raise a lot of frustrations in quite a scatter gun approach. Which can read as a little antagonistic.

Is getting the pump your main frustration? Have you contacted INPUT diabetes - they are a great charity who assist with access to diabetic technology so if there is a particular stumbling block in getting onto the pump I would highly recommend contacting input for advice. Or even asking for advice on the forum, there are a lot of people here on pump who have had to go through funding battles.

 

[jekyll79]

I don't actually want a pump @catapillar. My attitude is that there should be a budget per diabetic which they can spend according to their requirements. I think that a CGM would be far better for long term control than a pump(for me anyway). I don't mind injecting and will often do a lot more than I am supposed to if I am going through a phase where adjustments are needed. The constant recording of blood sugar levels would enable realtime data analysis and lead to pattern spotting far easier.
You would also have the benefit of alarms for bloods out of predefined ranges. I don't suffer from hypo unawareness, but do struggle to spot highs until I am about 15 or 16.

I think that if you are hypo unaware, it is ludicrous that you cannot get a CGM. I think it is absolutely ridiculous that you are forced to use a pump before they will consider a CGM. You say you have self funded a Dexcom. Which one have you got? I enquired about self funding a Dexcom G5 and it was thousands a year. I worked out how much the NHS spend on my current blood testing kit and subtracted that and it was still quite a bit. But I offered to pay towards that. They said it wouldn't be possible. I am tempted to just do it by myself, but feel (as you did with your colleagues not wasting their holidays on medical courses) why should I pay out thousands for something that may ultimately save the NHS thousands in the future, when others get equally expensive treatments for free?

 

[catapillar]

Yes, so while I have saved my time for holidays, I can't actually afford to go anywhere because all of my "luxury" money goes on the dexcom. I'm lucky that I can afford it and I'm not going without heating or anything.

The dexcom can work out cheaper than you think because the sensors will restart and last much longer than 7 days. My current one is on week 4 and is still perfectly accurate. However, it doesn't lead to a reduction in use of test strips - it needs calibrating twice a day & you aren't supposed to make any treatment decisions based upon your dexcom - you need a finger stick to figure out how much insulin to take.

I think the Freestyle Libre is a little bit cheaper, so that might be worth looking into.