Hello everyone

Simona

Member
Relationship to Diabetes
HCP/Researcher
I am new here and interested in learning more about the experiences of adults with diabetes (type 1 and 2) and foot complications.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
We have a longstanding member who has advanced Charcot Foot - who may be able to assist you - @Flower will hopefully see that you are researching such things. Her Blog about it is extremely informative.
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
I am new here and interested in learning more about the experiences of adults with diabetes (type 1 and 2) and foot complications.

Welcome to the forum @Simona

I believe you are not formally undertaking a research project at the moment, but are more interested in getting input into the questionnaire and patient information sheet that will form the basis of your research, is that correct?

Members here often express opinions and reservations about the nature of research questionnaires once they are already finalised and cannot be changed, so I am sure that there will be folks here who would like to help you get your questionnaire right before your research starts!

Are you primarily interested in hearing from people with experience of long term diabetes complications of the feet and legs?
 
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Simona

Member
Relationship to Diabetes
HCP/Researcher
Many thanks Mike @everydayupsanddowns! Yes you are right, at this stage of the project I am interested in getting feedback/opinions/ suggestions on the PIS form and on the questionnaire from people with diabetic foot complications (neuropathy and/or ulcers). Their input will help us improve the research and explore areas that are important to them.
I can provide the forms as word documents if you approve it.
Thank you and kind regards. Simona
 
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trophywench

Well-Known Member
Relationship to Diabetes
Type 1
That's brilliant Simona! - Warwick Uni Medical School when they were doing a lot of Diabetes research set up a lay group for exactly what you are trying to do now, where the researchers and their supervisor came to the Group meetings and presented the research proposition to us with drafts of the relevant paperwork.

We'd very often find ourselves having to ask, What on earth are you actually attempting to find out from the participants? They'd spend more time asking eg what doses of which drugs you were on or what your granny died of, than how badly the diabetes side effect they were sposed to be researching was affecting your life.

It could well matter of course - if you knew in the first place that they were really looking at how often X dose of Y drug made Z complication worse - but they couldn't be 100% honest up front about that. Confidentiality!

Or it was specifically Type 1 research and they'd ask, 'Do you take insulin?' - well yeah cos otherwise I'd be dead so couldn't be taking part in your ruddy research in the first place you pillock! :D
 

Simona

Member
Relationship to Diabetes
HCP/Researcher
That's brilliant Simona! - Warwick Uni Medical School when they were doing a lot of Diabetes research set up a lay group for exactly what you are trying to do now, where the researchers and their supervisor came to the Group meetings and presented the research proposition to us with drafts of the relevant paperwork.

We'd very often find ourselves having to ask, What on earth are you actually attempting to find out from the participants? They'd spend more time asking eg what doses of which drugs you were on or what your granny died of, than how badly the diabetes side effect they were sposed to be researching was affecting your life.

It could well matter of course - if you knew in the first place that they were really looking at how often X dose of Y drug made Z complication worse - but they couldn't be 100% honest up front about that. Confidentiality!

Or it was specifically Type 1 research and they'd ask, 'Do you take insulin?' - well yeah cos otherwise I'd be dead so couldn't be taking part in your ruddy research in the first place you pillock! :D
Hi Jenny and many thanks for your time to read and reply! I really appreciate it!

We believe it is important for people with diabetes experience to have the opportunity to be involved in diabetes research as their participation will positively impact on the quality of the study. We aim to conduct a research 'with' people not 'about' the people with diabetes. We want to explore and investigate areas that are important for them and how our research can improve the quality of life of people with diabetes and foot complications!
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Finding medics who don't jump to conclusions nor pretend to know everything about the complications would be my first preference.

Podiatrists who think women should be allowed to like the appearance of their own feet would be the next - because I object to having the outer surface of my nails filed away, and precisely why I have to soak em before cutting them. The other thing is, they are only allowed to use disposable tools since they are not allowed to autoclave anything - just chuck it away. OK so we can't casually catch something from someone else, BUT. I'm not at all convinced that cheap and nasty metal clippers can be sharpened to the same degree as properly annealed and cooled/hardened surgical steel - in fact I know it can't.
 

Simona

Member
Relationship to Diabetes
HCP/Researcher
Finding medics who don't jump to conclusions nor pretend to know everything about the complications would be my first preference.

Podiatrists who think women should be allowed to like the appearance of their own feet would be the next - because I object to having the outer surface of my nails filed away, and precisely why I have to soak em before cutting them. The other thing is, they are only allowed to use disposable tools since they are not allowed to autoclave anything - just chuck it away. OK so we can't casually catch something from someone else, BUT. I'm not at all convinced that cheap and nasty metal clippers can be sharpened to the same degree as properly annealed and cooled/hardened surgical steel - in fact I know it can't.

Many thanks Jenny for your insight! This is very useful! I think the points you raised are worth exploring in our research. I am very grateful for every opinion and suggestion which would help in improving care for people with diabetic foot condition.
 

Flower

Well-Known Member
Relationship to Diabetes
Type 1
Hello @Simona

I've lived with foot complications for years - neuropathy, ulcers, osteomyelitis, Charcot Foot , tissue infection, fractures - most of everything really! I'm happy to help if I can.
 

Old Bob

Member
Relationship to Diabetes
Type 1
Hello @Simona

I've lived with foot complications for years - neuropathy, ulcers, osteomyelitis, Charcot Foot , tissue infection, fractures - most of everything really! I'm happy to help if I can.
I have just read your post about Charcot Foot,
Wow, Thanks for sharing your experience, it is a big eye opener for me, my podiatrist thinks I may have early stage Charcot foot, just had a second x-ray today and been fitted with a boot. Should find out soon.
My level of attention to detail has just gone to 100%
 
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