Would you like to help raise awareness of diabetes complications?

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Diabetes UK

Diabetes UK

Know Diabetes. Fight Diabetes
Staff member
Later this year, we’re going to be launching a campaign to raise awareness of diabetes complications, to make sure people understand that diabetes is a serious condition.

As part of the campaign, we’ll be talking about complications – in particular sight loss and amputation – and would like stories from anyone who would be happy to share them.

If you have experience of sightloss or amputation, or maybe have been told you’re at high risk of these and are taking steps to avoid them, we’d like to hear from you. Perhaps you are close to someone who is living with sightloss or amputation, and could tell us how it’s impacted you both.

We’d like to hear stories from everyone, and we’re especially keen to hear from people with Type 2 diabetes as by and large we don’t tend to get as many people with Type 2 coming forward to share their experiences.

So if you are interested in sharing your story, please contact support.forum@diabetes.org.uk and we can put you in contact with the team.

Many thanks
Hannah
 
I don't suppose you are going to mrnment that the current NICE targets leave people at risk of complications in the long term.

You only have to actually read some of the academic research and you can see that over 20-30 years there is a risk if you HbA1c is 7.5% and upwards.

I wouldn't support what you are doing here because (potentially) people will just write it off as they got what they deserved. I feel you need to balence it with stories of people who maintained good control over the decades.

Diabetes is a serious disease, but complications does not have to be inevitable. But sometimes it's more than just the individual to achieve that. Sometimes you need the health care team too.
 
Mark T said:
I don't suppose you are going to mrnment that the current NICE targets leave people at risk of complications in the long term.

You only have to actually read some of the academic research and you can see that over 20-30 years there is a risk if you HbA1c is 7.5% and upwards.

I wouldn't support what you are doing here because (potentially) people will just write it off as they got what they deserved. I feel you need to balence it with stories of people who maintained good control over the decades.

Diabetes is a serious disease, but complications does not have to be inevitable. But sometimes it's more than just the individual to achieve that. Sometimes you need the health care team too.
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Well said Mark...I fully support what you say...I hope others come forward to support you too.
 
I would welcome a way to raise awareness of the devastating impact complications have on your life but I don't know how you go about it .

Personal stories and battles don't necessarily work, leaflets on various 'opathies' don't necessarily mean a thing. It's not until until you're the one living with the all consuming fear of proliferative retinopathy and the reality of losing your sight/independence/driving licence /job/house that reality bites. I lost sight in both my eyes and my world imploded. I have central vision in one eye now which is the most precious thing.

Although my sight loss was pre internet/pre organised annual retinal screening, I wasn't ignorant of the facts. I had been told about retinopathy but it meant nothing to me as a young person, I couldn't imagine how a damaged retina would affect my sight so rapidly and so badly. I imagined it might cause a bit of trouble with my sight in old age, not devastate my sight at a young age.

I'll be interested to see what suggestions there are to raise awareness. The feeling/hope that complications won't happen to me, that all this applies to somebody else with much worse control is very hard to overcome in a meaningful way.
 
I wouldn't support it either and fully agree with @Mark T . I am fed up to the back teeth with this blame culture on lifestyles and it needs to stop and be countered aggressively by DUK and others.
Yes, it is down to individuals to manage what was defined to me as an incurable, chronic condition but, if my initial experiences are anything to judge by, the advice and support I was given at time of Dx was totally inadequate, outdated and downright dangerous. No mention at all of the hazards of carbohydrate consumption levels.
Complications do occur agree but in chorus with Mark, they do not have to be the inevitable outcome. I certaily do not and will not accept that as my fate. Far to many people, and I have read many posts to this effect, blame lifestyle as the prime factor. It is a contributory factor but not the sole causation factor.
Individual responsibillity yes, but support from knowledgeable and informed health support teams is vital.
 
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I couldn't agree more with MarkT and Vince. What is being suggested will simply pander to the current NHS approach to diabetes and feed the ever popular 'it's all their own fault' mentality in the media,

As a campaigning organisation DUK should be fighting for the basics necessary for people to manage their own health. This means education, access to testing equipment and guidance on how to use it, full endorsement of the low carb/full fat diet and plenty of coverage about how diabetes can be successfully managed.
 
Mark T said:
I don't suppose you are going to mrnment that the current NICE targets leave people at risk of complications in the long term.

You only have to actually read some of the academic research and you can see that over 20-30 years there is a risk if you HbA1c is 7.5% and upwards.

I wouldn't support what you are doing here because (potentially) people will just write it off as they got what they deserved. I feel you need to balence it with stories of people who maintained good control over the decades.

Diabetes is a serious disease, but complications does not have to be inevitable. But sometimes it's more than just the individual to achieve that. Sometimes you need the health care team too.
Click to expand...
Totally agree with Mark. Also need to educate the media that type 2 is not all about lifestyle and weight. Listening to a local radio station one evening, the presenter was going on about how type 2 was the individuals fault by being obese and that it was a burden on the nhs and implying we should not receive nhs treatment. This then encouraged other uneducated listeners to call in with the same views. Unfortunately I was driving at the time so could not phone in. I know quite a few type 2's who were not overweight on diagnosis and never have been.
 
So what happens then, to the person who goes along to their doctor with a high BG reading, GP says, you've got diabetes, here's some Metformin, go and see the nurse, nurse says, here's a leaflet on healthy eating, keep taking the tablets and come back in 3 months? We've all heard from people who had this approach from their HCPs, have come on here and said, OK, I realise this is a serious condition, more serious than my nurse seems to think, what the heck can I do about it?
But what about the people who don't find their way here? Who don't realise what they could be facing if they don't take it seriously? (We don't always think about those people, because we are all people who did go home and immediately try to find out what we could) These people, surely, need DUKs help in facing up to the condition. It's all very well campaigning for the press to stop demonising us, but surely that should only be one part of a campaign. Making people aware of what could happen, and encouraging individual responsibility must surely have its place.
I do worry about how this could be put across, we all know that if someone had waved a blind amputee at us in our youth, we'd have thought, 'well that'll never happen to me' but I do feel that newly diagnosed people should have all the facts at their disposal, and I don't think they are getting all the information they need at present from their HCPs. Not everyone goes home from an appointment and gets on Google, and those who do may not find the most appropriate sites, so yes, I think there is a need to make people aware that they ought to take their condition seriously.
 
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I couldn't agree more with @Vince_UK, @Mark T , and @Robin. Lifestyle changes are vital to manage the condition, but this is common with a lot of illinesses.
Diabetes in Italy isn't a problem that is raised a lot in general public, normally isn't mentioned by the politicians, and in television is mainly talked about in health transmissions, between eye surgery and breast cancer. Unfortunately I am really aware that not all people with diabetes are correctly informed by their GP and there is a postcode lottery on treatments.

I suppose that the awareness campaign ha to be targeted to the professionals and to contact people that have been already diagnosed, rather than the general public.
 
Balance.

Yes you need to give people the full facts on the possible consequences. Those consequences are serious and life changing. There is a nice little table in Gretchen Becker's book which states the cumulative risk of retinopathy based on HbA1c level - cumulative is the key word here - it doesn't matter if you get you numbers back down, damage has been done.

But I feel some of the responsibility for the current cost of diabetes complications lays with the short sightedness (driven by funding) of the NHS and the carb's with everything mentality.

What is the aim of the awareness campaign - what do you seek to change? I'd like to see a campaign aimed at health care professionals to make them aware that forums like this exist. I'd like to see a campaign to educate some of them not to be frightened of HbA1c's below 7% (OMG, your below 7%, you must be having lots of hypo's, we might have to report you top the DVLA if you don't get it higher).

Personally, I'd like to see DUK fund research to expand on the Scandinavian research that starts to consider that diabetes is more than a couple of types. To be honest that was always known, since I can find old research papers that already divide T2 into 2 sub-types. But that's going Off-Topic.

But yes, an awareness campaign that there are serious complications. But you risk turning people off with "it will never happen to me" or " it's their own fault". Even worse you could get "I'm f***ed anyway, I might as well carry on regardless" (YOLO) type responses.

I'd rather see the complications balanced with people who have done 40+ years with no serious complications. To give people hope that it can be done, that you can have a healthy active life despite diabetes.
 
I agree with the sentiments of the gang, sorry Hannah. Demonstrating what can go wrong if you don’t control diabetes is not the way to get folk to change. It would be more effective as a tool to persuade GPs, NICE, and the government that testing strips for T2s is essential.

For sure, GPs and their nurses need better training in T2.
 
Surely given that a lot of the damage can buld up before you are actually diagnosed as fully diabetic - awareness of the potential dangers should be there as part of the "at risk" assessment tools.
 
Robin said:
So what happens then, to the person who goes along to their doctor with a high BG reading, GP says, you've got diabetes, here's some Metformin, go and see the nurse, nurse says, here's a leaflet on healthy eating, keep taking the tablets and come back in 3 months? We've all heard from people who had this approach from their HCPs, have come on here and said, OK, I realise this is a serious condition, more serious than my nurse seems to think, what the heck can I do about it?
But what about the people who don't find their way here? Who don't realise what they could be facing if they don't take it seriously?
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I agree with the majority of the points you raise Robin...making those at risk aware of possible complications is an essential part of diabetes care...it would be remiss not to include it...however that must be balanced with the positives...no one should be encouraged to believe it's easy...that complications will never happen to them...but...lets hear about the hugely positive aspects a diagnosis can & has brought about for many of us...lets some hear encouragement on how we can manage our conditions to avoid/delay/limit complications... I include myself in that...how we are managing...how we can manage...I'm particularly struck with your "here's a leaflet on healthy eating, keep taking the tablets and come back in 3 months? We've all heard from people who had this approach from their HCPs, have come on here and said, OK, I realise this is a serious condition, more serious than my nurse seems to think, what the heck can I do about it?" comments...The exact scenario in my GP's surgery on my first diabetes appointment with him...I couldn't have presented it better...more balance please DUK...both sides of the 'coin' please.[/QUOTE]
 
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bamba said:
Surely given that a lot of the damage can buld up before you are actually diagnosed as fully diabetic - awareness of the potential dangers should be there as part of the "at risk" assessment tools.
Click to expand...
Awareness of complications should be addressed but should not be the main focus of the campaign...balance is essential...this is what could/may happen...as @Mark T says it should never be presented as an inevitably...how many here have heard 'your diabetes is progressive, lets increase the medication, eventually you'll be on insulin anyway'...I'm two years since diagnosis...down to managing with 500gms of Metformin daily...aiming for diet & exercise only after my next HbA1c...despite my GPs attempts to increase my medication to the maximum amount at the first review after my diagnosis...yes...lets be cautious...but please lets be positive also...balance is what we're asking for...nothing more.
 
MikeTurin said:
I couldn't agree more with @Vince_UK, @Mark T , and @Robin. Lifestyle changes are vital to manage the condition, but this is common with a lot of illinesses.
Diabetes in Italy isn't a problem that is raised a lot in general public, normally isn't mentioned by the politicians, and in television is mainly talked about in health transmissions, between eye surgery and breast cancer. Unfortunately I am really aware that not all people with diabetes are correctly informed by their GP and there is a postcode lottery on treatments.

I suppose that the awareness campaign ha to be targeted to the professionals and to contact people that have been already diagnosed, rather than the general public.
Click to expand...
That would be a valid first step Mike...then they could expand on it to include the general public...once there is distance from the negative/stereotypical/fatalistic/dismissive portrayal of T2's we hear often.
 
Mark T said:
Balance.

Yes you need to give people the full facts on the possible consequences. Those consequences are serious and life changing. There is a nice little table in Gretchen Becker's book which states the cumulative risk of retinopathy based on HbA1c level - cumulative is the key word here - it doesn't matter if you get you numbers back down, damage has been done.

But I feel some of the responsibility for the current cost of diabetes complications lays with the short sightedness (driven by funding) of the NHS and the carb's with everything mentality.

What is the aim of the awareness campaign - what do you seek to change? I'd like to see a campaign aimed at health care professionals to make them aware that forums like this exist. I'd like to see a campaign to educate some of them not to be frightened of HbA1c's below 7% (OMG, your below 7%, you must be having lots of hypo's, we might have to report you top the DVLA if you don't get it higher).

Personally, I'd like to see DUK fund research to expand on the Scandinavian research that starts to consider that diabetes is more than a couple of types. To be honest that was always known, since I can find old research papers that already divide T2 into 2 sub-types. But that's going Off-Topic.

But yes, an awareness campaign that there are serious complications. But you risk turning people off with "it will never happen to me" or " it's their own fault". Even worse you could get "I'm f***ed anyway, I might as well carry on regardless" (YOLO) type responses.

I'd rather see the complications balanced with people who have done 40+ years with no serious complications. To give people hope that it can be done, that you can have a healthy active life despite diabetes.
Click to expand...
Amen to that Mark.
 
There are far wider issues than testing strips for T2's here...the whole picture has to be considered...attitudes...education...public perceptions...our health providers perception...our ideas...our views...all of it relevant...to limit this to the testing strips for T2 issues would merely dilute that premise.
 
Hannah DUK said:
Later this year, we’re going to be launching a campaign to raise awareness of diabetes complications, to make sure people understand that diabetes is a serious condition.

As part of the campaign, we’ll be talking about complications – in particular sight loss and amputation – and would like stories from anyone who would be happy to share them.

If you have experience of sightloss or amputation, or maybe have been told you’re at high risk of these and are taking steps to avoid them, we’d like to hear from you. Perhaps you are close to someone who is living with sightloss or amputation, and could tell us how it’s impacted you both.

We’d like to hear stories from everyone, and we’re especially keen to hear from people with Type 2 diabetes as by and large we don’t tend to get as many people with Type 2 coming forward to share their experiences.

So if you are interested in sharing your story, please contact support.forum@diabetes.org.uk and we can put you in contact with the team.

Many thanks
Hannah
Click to expand...
I could supply you with a few stories but they would be about the courage of those who have lost sight or limbs because of this progressive illness. I could also tell stories of those with diabetes who are on dialysis or walk with leg braces. Equally others could tell about such disabilities caused through a spectrum of other illnesses. Apart from the soldier returning from a warzone with battle scars I don't think the general public will deviate from their usual apathy. We have a T1 prime minister and yet I see our NHS struggling through poor resources and lack of funding. Time and time again newbies and for that matter regular members post on this forum about the poor quality of treatment they receive. Of course there are good medics but you wouldn't think so judging by some of the posts on here.
Thank goodness for MikeyB and the other experienced members who at least try to reassure and help those newbies, many of whom are literally desperate for help and advice. During my many episodes of pancreatitis NOT one of the tens of doctors who were involved with my treatment believed I had been a teetotaller for the majority of my life.(alcohol and gallbladder account for vast majority of cases).Despite being told I was pre diabetic, little medical advice was given to me. Later when confirmed diabetic I was given a wad of leaflets written by the British Heart Foundation, not one from any other charity. Warning the general public of the complications of diabetes will make little difference. Warning the medical institutions may make a difference but I'm not holding my breath.
 
Grannylorraine said:
Totally agree with Mark. Also need to educate the media that type 2 is not all about lifestyle and weight. Listening to a local radio station one evening, the presenter was going on about how type 2 was the individuals fault by being obese and that it was a burden on the nhs and implying we should not receive nhs treatment. This then encouraged other uneducated listeners to call in with the same views. Unfortunately I was driving at the time so could not phone in. I know quite a few type 2's who were not overweight on diagnosis and never have been.
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I wonder how he will feel if he or anyone in his family becomes diabetic. I too am sick to death of the media and their blaming of individuals for their medical problems. It is not overweight and obesity. I know two obese people whose blood sugars are normal. I know others who are normal or underweight and diabetic. I was pre-diabetic, got out of it and now back in it again. I am underweight and was never overweight/obese.

Who do these radio and media people think they are!!!! Should not have NHS treatment. We all pay towards it so are entitled to use it. I am sick to death of the media.
 
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