Deserving of focus

[Haggis1411]

dear all, I was diagnosed as type1at the age of 2yrs old..the world of nhs care has reverted to type 2 diabetes, leaving myself and many others disengaged and not prioritised at all.. does anyone else feel as I do? Fighting for legitimate care not of our own direction?? I'm now 39 and been disengaged with the nhs since diagnosis. Does anyone give a flying ?u+k? Seems not. We live within a NHS that prioritise by gain share and CQUINS, not caring for those deserving.. for this I hate what this site stands for and lacks - personal responsibility. I accepted this since diagnosis. Try insulin since 2yrs of age!!! Point made.. John

 

[Resurgam]

I don't feel focused on - my doctor told me I had diabetes, having known that for a couple of weeks, but no urgency about letting me know, handed me a prescription for tablets which made me really want to give up on life and has not wanted to see me since.
I did get the education course - all those healthy carbs I should be eating - yeah, right.
Some help that was.

 

[cott97]

The NHS does its best and sometimes that isn't enough particularly for long term conditions. I'm not sure what the answer is but some of it lies with us. We have a responsibility to educate ourselves, to act on what we have learnt and to share our experiences. Exactly what this site does best. The NHS can provide advice, medication and emergency treatment but is not and for me should not be the only answer.

 

[Prem51]

I hate what this site stands for and lacks - personal responsibility./QUOTE]

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I see you joined the forum at about 2.30 am, and posted this one minute later.
If you actually read the threads on this forum you will see that the people on here, both T1 and T2, do take responsibility for their condition and are doing the best they can to control their illness.

 

[covknit]

dear all, I was diagnosed as type1at the age of 2yrs old..the world of nhs care has reverted to type 2 diabetes, leaving myself and many others disengaged and not prioritised at all.. does anyone else feel as I do? Fighting for legitimate care not of our own direction?? I'm now 39 and been disengaged with the nhs since diagnosis. Does anyone give a flying ?u+k? Seems not. We live within a NHS that prioritise by gain share and CQUINS, not caring for those deserving.. for this I hate what this site stands for and lacks - personal responsibility. I accepted this since diagnosis and those that continue to focus on the epidemic of obesity have themselves to blame. Try insulin since 2yrs of age!!! Point made.. John

what; you do not get your annual review, medication, eye and blood tests? The NHS failed me by not telling me when they discovered I was pre diabetic, the NhS fail people when they do not get to the scene fast enough, people fail society by talking without knowledge and the media ought to be held to account for crimes against humanity and not telling the truth in a fair and balanced manner. Who is it that decides the corporations with the biggest advertising budget cannot be held to account for their actions allowing them to threaten, bully and place dodgy research encouraging misunderstanding and unhealthy diets?

 

[therower]

@Haggis1411 . An interesting post giving an insight into your frustrations. I can understand why you feel the way you do but you have actually racked up 37 yrs of diabetes and you may despise the NHS and they might not provide the service you think you deserve. I suspect though that they have at least provided you with 37 yrs of life giving medication. If that isn't something then maybe you should sever all ties with the NHS and fly completely solo, there's no law that says you have to use the NHS.
As for this site, you are quite at liberty to give your opinions good and bad, I have to agree that I find some aspects on the site challenging. Ultimately I'm the one who logs in hence any issues I have are purely down to me, I make the choice.
Finally as a T1 I do get very frustrated with perceptions, coverage, lack of coverage and general ignorance out there but hey at the end of the day there's a lot more to life than diabetes and all it's frustrations.

 

[Jaylee]

dear all, I was diagnosed as type1at the age of 2yrs old..the world of nhs care has reverted to type 2 diabetes, leaving myself and many others disengaged and not prioritised at all.. does anyone else feel as I do? Fighting for legitimate care not of our own direction?? I'm now 39 and been disengaged with the nhs since diagnosis. Does anyone give a flying ?u+k? Seems not. We live within a NHS that prioritise by gain share and CQUINS, not caring for those deserving.. for this I hate what this site stands for and lacks - personal responsibility. I accepted this since diagnosis. Try insulin since 2yrs of age!!! Point made.. John

Hi John.

Welcome to the forum.

I have to admit that back in that era you were diagnosed, I was feeling a little disenfranchised after a few years of it trecking back and forth to consultations myself.
Then we found a family GP excelling in diabetes treatment not just for myself but my T2 dad aswell.
We all have personal resposibillities. My father was a fit & active hard working family guy. He actually retired 3 times, working till his late 70s, so strong was his pride in his work ethic..

I feel there is an abundance of "personal responsibility". One only needs tor read the successes & experience of all types!

 

[badcat]

Im not too sure what you think is deserving of focus - there are many things that can be taken from your post - the things that stand out for me are
1) you seem to believe that there are deserving and undeserving diabetics
2) you seem to see yourself as a deserving but poorly treated diabetic
The thing I would see as deserving attention out of that is that diabetes is a pretty **** disease, whatever type you have and is also one that mainstream medicine has a limited understanding of.
In my own case I was tested numerous times as a child for type 1 but only via urine testing, I was diagnosed T2 in a medical emergency while in my 30s and told Id had diabetes at least 15-20 years prior to diagnosis due to the level of damage already done to my eyes. At the age of 60, I'm now told its probably monogenic diabetes as ive been on same meds at the same dose for over 20 years, tho no testing has been done to confirm this one way or the other - I have also used v aggressive dietary management to achieve stability.
I could be very bitter in the same way as you seem to be and be consumed by the "what ifs?" but whats the point? - the only thing that kind of thinking would achieve would be to damage myself. I see bitterness as being something that no-one other than myself has either a) the power to do anything about or b) will give a flying *u*k about to quote your term.

 

[noblehead]

Fighting for legitimate care not of our own direction?? I'm now 39 and been disengaged with the nhs since diagnosis. Does anyone give a flying ?u+k? Seems not.

What care are you referring to? Are you under the care of a hospital diabetes clinic or your gp surgery.

Being disengaged doesn't work believe me, you have to work with your care team and try and get along for the benefit of all involved, although we manage the condition on our own 99% of the time there are occasions where the input from a HCP's is worth its weight in gold.

People do care and there's some great support out there if your willing to reach out for it @Haggis1411

 

[zand]

You are right we do all have a personal responsibility. Not just in respect of our health but also how we judge others and by not believing everything we read in the gutter press. Are you saying T2's aren't deserving of treatment? Why do you deserve help more than me or anyone else? This site is about respecting and supporting everyone, presumably you think only T1s deserve this? Can you see how twisted that is? I doubt it.

My son has been asthmatic since he was 2. He has to pay for his prescriptions now he is an adult.

I normally say welcome to the forum to newbies, but maybe I should reserve that for those who deserve a welcome; for those who are here to give and receive support, not for those who just want to knock others. Point made...zand.

 

[lovinglife]

Really?

 

[Haggis1411]

@Haggis1411 . An interesting post giving an insight into your frustrations. I can understand why you feel the way you do but you have actually racked up 37 yrs of diabetes and you may despise the NHS and they might not provide the service you think you deserve. I suspect though that they have at least provided you with 37 yrs of life giving medication. If that isn't something then maybe you should sever all ties with the NHS and fly completely solo, there's no law that says you have to use the NHS.
As for this site, you are quite at liberty to give your opinions good and bad, I have to agree that I find some aspects on the site challenging. Ultimately I'm the one who logs in hence any issues I have are purely down to me, I make the choice.
Finally as a T1 I do get very frustrated with perceptions, coverage, lack of coverage and general ignorance out there but hey at the end of the day there's a lot more to life than diabetes and all it's frustrations.

 

[Haggis1411]

Hi there.. my post was written some time ago. Please accept my messed up post as hypoglycaemic. As a 42 year old with 40 years of insulin dependent diabetes, my frustrations of the NHS and it’s inability to provide me the best it can are still there. I pay huge amounts in taxes and have never in my life claimed benefits.
yet my consultants nurse says I’m ‘obese’ despite having 3.7% body fat and working out often. my wonderful consultant insists I do the Daphnie course which I’ve already done, yet I cannot get a pump. As a qualified diabetic with a degree in nutrition / physiology I hope you appreciate my frustration? I have historic lumps and scarring from injecting that you would not wish to see.
mend of my tether with this bull %##^. so how do I get a pump? Three comas in 6 months affecting my work and relationship - let alone my responsibilities as a father of 6.
I pay £3000 a month in tax, yet I’m provided nothing. Anyone else getting this?

 

[Deleted member 308541]

I pay £3000 a month in tax, yet I’m provided nothing. Anyone else getting this?

You must be on a good salary / wage to be paying that much tax every month, ever thought about self funding a pump?

 

[Resurgam]

Back when I had a 24 inch waist I was told that I was over weight - I used to roadie for a duo and I could carry one of the speaker cases in each hand, and lift a dead drunk guitarist off the pavement single handed. The normal rules don't apply to the muscular but that doesn't register I think.
I still have not seen my doctor, by the way. Its over three years now.