Type 1 - what's missing?

[AbbieHC]

Hi there,

I am conducting some research in to Type 1 diabetes in children and young adults and wondered what people felt was missing that would be helpful in the education/support of Type 1?
For example: What is currently missing that you would really benefit from or like?
- more information
- information that is related to specific topics (i.e medication, exercise, driving....)
- Central location for all information (ie. a website or app)
- more forums to chat, games, quizzes and fun things

Do you think it would be useful to have information related directly to the area you live and a website for locals near by?

Thank you.

 

[Emmotha]

Hi!
I'm 29 so not sure if I'm technically still 'young' :'-( but can tell you my experience.
I was diagnosed in June and honestly felt like I had a bad experience of support in early stages (don't know if that helps you?)
First of all my doctors didn't recognise my symptoms, I'd seen then 6 times with classic symptoms and they fobbed me off with different things until I demanded a blood test. With the results they sent me straight to A&E with ketones and high blood sugar. So my first thing is making doctors aware that young adults without family history can and do develop type 1 diabetes! Even the specialists were baffled that I could get it as an adult (seriously!)

Then I didn't feel there was much support. My doctor directed me to this forum which has been my saving grace.

I think that a lot more needs to be done to support young(ish) adults and adults in general who are diagnosed, not just diagnose, show how to inject and chuck them out. Most advice is for kids, the nhs need to wake up to adult t1 diagnosis (in my opinion)

Hope that helps

 

[Spiker]

Hi there,

I am conducting some research in to Type 1 diabetes in children and young adults and wondered what people felt was missing that would be helpful in the education/support of Type 1?
For example: What is currently missing that you would really benefit from or like?
- more information
- information that is related to specific topics (i.e medication, exercise, driving....)
- Central location for all information (ie. a website or app)
- more forums to chat, games, quizzes and fun things

Do you think it would be useful to have information related directly to the area you live and a website for locals near by?

Thank you.

Hi Abbie

Please could you state the organisation you represent or work at, the purpose of the research, what it will be used for, if the results will be publicly available, and sponsorship or commercial involvement if any?

Thank you.

 

[AbbieHC]

Thank you Emmotha - your feedback is really helpful and I'm sorry to hear that you didn't receive the support you needed at the time of diagnosis. Hopefully others will also share their thoughts in what other forms of support they need and this will be really useful.

Spiker - apologies for creating two pages in the forum and not linking back (i'm new to this and didn't realise this was the rules) - once again sorry about that. I work for a medical communications agency, and we are considering what possible tools may be required to help educate and support children and young adults living with Type 1 (for example a website, games etc). The research is my own and will only be used in order to help me understand the gaps in this therapy area and appreciate what other support should be offered.

 

[Spiker]

Thanks Abbie.

 

[AbbieHC]

No problem - thank you

 

[Spiker]

**** I just typed a long post and the stupid phone app ate it.
****.
Oh well I was 29 at diagnosis so maybe that doesn't count as "young".

 

[Spiker]

Things were different then anyway. It was the late 18th century, after all. It was like "Congratulations Mr Spiker, you have diabetes. Would you like to die in slow agony, or in silent misery? Have a turnip and a bottle of gin."
Them were the days. NHS Choices.

 

[AbbieHC]

All info is helpful. Really useful to hear what people feel would help to support and educate them more for Type 1

 

[Robinredbreast]

Things were different then anyway. It was the late 18th century, after all. It was like "Congratulations Mr Spiker, you have diabetes. Would you like to die in slow agony, or in silent misery? Have a turnip and a bottle of gin."
Them were the days. NHS Choices.

**** I just typed a long post and the stupid phone app ate it.
****.
Oh well I was 29 at diagnosis so maybe that doesn't count as "young".

I was 31, and I think, we were ' in a normal range' for type 1 in the olden days, so we were.............. erm still youngsters ?

 

[Spiker]

Things have moved on a bit since the olden days of course, and in the modern era turnips and gin are no more to be seen. The conversation goes a bit more like:

Doctor: Bad news I'm afraid, you're diabetic.
Patient: Oh noes. What do I do Doc?
Doctor: Do everything we say, and you will be fine. Come back in a year.
Patient: Hi Doc, me again. Am I fine?
Doctor: Oh noes. You are ****. Did you do everything we said?
Patient: Yes Doc. I am highly averse to death and decrepitude. I did everything you said.
Doctor: You are lying. Go away and do everything we say, come back in a year.

Repeat until dead.

Anyone got some gin and a turnip?

 

[Robinredbreast]

Hi there,

I am conducting some research in to Type 1 diabetes in children and young adults and wondered what people felt was missing that would be helpful in the education/support of Type 1?
For example: What is currently missing that you would really benefit from or like?
- more information
- information that is related to specific topics (i.e medication, exercise, driving....)
- Central location for all information (ie. a website or app)
- more forums to chat, games, quizzes and fun things

Do you think it would be useful to have information related directly to the area you live and a website for locals near by?

Thank you.[/

Hi!
I'm 29 so not sure if I'm technically still 'young' :'-( but can tell you my experience.
I was diagnosed in June and honestly felt like I had a bad experience of support in early stages (don't know if that helps you?)
First of all my doctors didn't recognise my symptoms, I'd seen then 6 times with classic symptoms and they fobbed me off with different things until I demanded a blood test. With the results they sent me straight to A&E with ketones and high blood sugar. So my first thing is making doctors aware that young adults without family history can and do develop type 1 diabetes! Even the specialists were baffled that I could get it as an adult (seriously!)

Then I didn't feel there was much support. My doctor directed me to this forum which has been my saving grace.

I think that a lot more needs to be done to support young(ish) adults and adults in general who are diagnosed, not just diagnose, show how to inject and chuck them out. Most advice is for kids, the nhs need to wake up to adult t1 diagnosis (in my opinion)

Hope that helps

Some good points and I agree that there should definitely be more awareness about type 1

 

[Robinredbreast]

Things have moved on a bit since the olden days of course in the modern era (aka "my dotage") turnips and gin are no more to be seen. The conversation goes a bit more like:

Doctor: Bad news I'm afraid, you're diabetic.
Patient: Oh noes. What do I do Doc?
Doctor: Do everything we say, and you will be fine. Come back in a year.
Patient: Hi Doc, me again. Am I fine?
Doctor: Oh noes. You are ****. Did you do everything we said?
Patient: Yes Doc. I am highly averse to death and decrepitude. I did everything you said.
Doctor: You are lying. Go away and do everything we say, come back in a year.

Repeat until dead.

Anyone got some gin and a turnip?

No sorry spiker, out of turnips and I don't drink

 

[Spiker]

Slightly less flippantly, OP AbbieHC, the most important thing that is missing from the conversation between diabetics and the health care providers who support them is an honest, open, two-way dialogue with some mutual respect and some mutual humility. Another way of putting it is, what's missing from the conversation is a conversation.

Picture a doctor in a white coat with a megaphone wearing a pair of ear defenders and you have a good caricature of what it can be like at times to engage with our beloved HCPs. Make no mistake we are grateful to them for what they do, and they are keeping us alive. But the conversation is very often a one way message. And it's a single message, with not much room for flexibility. There is also a serious lack of outreach and communication, even in the one way message. I could write a script.

The Type 1 script would go like this:

Doctor: Ok patient, you are type 1. Go on medium acting insulin while you get you s**t together. Avoid cakes and reduce Mars bars to acceptable levels.
Patient: OK
(a year later, or quite often never...)
Doctor: Oh hi, you came back. Right, yeah, ok. OK, go on basal bolus. Here's a pamphlet. See ya.
Patient: OK. Why didn't you tell me this at diagnosis.
Doctor: You weren't ready for it.
(a decade or so later)
Doctor: Oh hi, Mr Patient. Yes my predecessor's predecessor left a file on you. You are not doing too great. We do things differently now. Change your insulins. See ya. (Wouldn't want to be ya!)
Patient: Why didn't you tell me?
Doctor: You never asked.
(a decade or so later)
Doctor: Hi P8tient, LOL. u is not doing gr8. u need a pump! Go on DAFNE.
Patient: What's DAFNE? What's a pump? Why didn't tell me about these things?
Doctor: You never asked.

 

[Spiker]

By the way, @AbbieHC, your handle is a passable onomatopoeiac anagram of HbA1C. Coincidence? ;-)

 

[PaulinaB]

Awareness is missing! People have no idea what type 1 is or there even are types! And it's all put into one "diabetes" box, when it's so different... It's a freaking deadly disease that will kill you within days if you don't pay attention... And "paying attention" is not popping a pill in the morning

 

[zed]

Am 21 and the doctors and nurses conversation with me went 'oh well if you don't inject then you'll have to get your eyes operated on and your feet amputated' no people skills what so ever and I was only 7 at the time. Well obviously I ignored them and rebelled and it's liturally your hba1c is to high come back in 6 months oh it's high again come back next yr!. Maybe if they actually helped by talking to me like I was a child and not 50 I wouldn't have been such a difficult patient. Oh and saying to my dad 'do you even care about your child's health' and asking me questions like 'why is your BG high oh why is it low' well your the doctor you tell me!!!!! Anyway introducing young adults or those in their teenage years to others that have diabetes would help. #RantOver

 

[Spiker]

As @zed just noted, peer group support is incredibly powerful. It is a way to exchange information that has real credibility, because it is experience-based. It also is highly motivational in its own right. You interact with people who inspire you, show you and encourage you to do better. And you also interact with the car-crashes by the side of the road, people who are the warning signs that remind us that we are the only ones who can make a difference to our own health. And you get the opportunity to help others and have your own experiences recognised, which is incredibly valuable and motivating in its own way. There is also opportunity for the kind of 'group therapy' and listening, forming supportive relationships, that is needed to get through the major motivational challenges on the long haul that is diabetes.

It's also quite useful for ranting and hurling drunken abuse. "ymmv" kids! ;-)

 

[Brunneria]

From what I've seen on this forum, the education and handling of young (child and teen) diabetics is amazing compared with how newly diabetic adults are handled:

Phone call diagnoses. Often on a Friday (doc tidying up their To Do list before end of week).
3 month waits before initial appts (in the meantime, just avoid sugar).
Doctors dodging all questions and passing the buck to the diabetic nurse (next available appt in 6 weeks)
Insulin and testing strips rationed to type 1s ***

Perhaps this would be a fruitful area of research?
Mind you, probably less funding available...

Cynical? Moi? Surely not.

 

[Spiker]

Got to say @Brunneria darling (nice outfit by the way!), I thought the same thing - why does it seem that every other research programme or outreach activity or whatever seems to be targeted at the young? Now I have nothing against the young - many of my friends used to be young - but I do wonder if the allocation of funding is properly balanced? Are young people really worth more than us mature types?

Then I remembered that NICE weights the net benefit of almost every treatment or intervention by multiplying it by the expected remaining life span of the person treated. So if we all live to 80, a 10 year old with 70 years to live is 7 times more "benefit" to treat than a 70 year old with ten years to live. Compared to a 20 year old, a 40 year old is "worth" two thirds and a 60 year old only one third. In my case I'm worth about 14.5%. Strangely that's exactly the same as the alcohol content of my massive bottle of DRINK!