Would anyone like to share their stories about their experiences with doctors nurses and everyone else in between?

I'm sure we are not the only ones who have had the run around from doctors, make to feel bad about using test strips and feel sometimes that we are left to fend for ourselves.

Views: 346

Replies to This Discussion

Forgive me if I disillusion, Diabetes UK are as much use at advocacy as a chocolate teapot. They will not do anything that could be construed as even vaguely political. This means that if you need support for any care need, you might as well whistle. Personal support can be got both here & on Shoot up or Put up (www.shootuporputup.co.uk)

There are local patient advocacy services. They deal more with complaints about your local health care system & helping to resolve them. Trying to get you the treatment you need is not in their remit.

What does that leave? Not a huge amount, I am afraid. I have just been turned down for the new ESA benefit. The grounds are that diabetes doesn't stop you working. The fact that I get DLA because I am diabolic seems to have escaped the bureaucrats. We are not a large group & so we need to be very vocal about our treatment & care needs. Writing to MPs, MSPs & AMs is a start. INPUT can be helpful if your need is pump related.

Ollie, "learn to manage your doctor & pharmacist"? Superb!! Unfortunately very necessary. I think we would all do better if we told the "professionals" that we are the experts on our own condition right from the off. It has taken me over 35 years to realise that I am not lazy but my diabolics doesn't fit their models. That is the model's fault, not mine.
If an advocacy service were developed, what kinds of things would you like them to do?

How's about a counsellor or perhaps even a clinical psych in clinic as a standard? Speaking personally, I know my diabolics would have been a lot easier if there had been some support adjusting to & dealing with the fallout. Would anyone say diabolics is easy to deal with?
Publishing national standards for care & the advocacy service helping to ensure that each hospital & just as importantly, each GP sticks to those standards.
Do you get eye & kidney tests, foot care & crucially the best treatment available? A specialist diabolics advocate should have a good knowledge of all this. Perhaps if the people involved had personal experience of the life.
Also, what about some help with the non-medical issues? Driving licences, employment & the law are the examples that spring to mind first.

Given the massive increases in both Type I & II over the last couple of decades & the increase in complexity of treatments, isn't a diabolic advocate a pipe dream that should become a necessity?
Great points... I would like to know more about what Diabetes UK get up to. I also noticed today there is a diabetes.co.uk and diabetes.org - are they two separate organisations? Why are there two? Excuse me going off topic but I'm curious about this.

The fall out is really difficult, traumatic even. I saw a counsellor privately for a few years, in many ways it was the best diabetes support I could hope for as it helped me tackle all of the other issues... well, eventually.

I am quite new to diabetes forums online, how have you found them? I've got a lot of help from diabetessupport.co.uk recently, it was nice to get some non-judgmental help. I used to find my doctor very damning and stopped seeing them for a few years as I found them so upsetting
diabetes.org is the American Diabetes Association website. diabetes.co.uk is a British site, I think. The latter seems to have a lot of useful information. Why two? Competition I suppose. Diabetes UK do fund a lot of research & provide support in various forms. I'm not the best to answer as I have had a disagreement or two with them over the years. (This time next year I'll just have had my 40th anniversary.)

I also saw a therapist for a while & found it very helpful. My fallout apparently equated to PTSD, which did freak me at first but made sense after a while. Unfortunately, I couldn't afford the fees... :'-(

Online forums are as useful as you make them. Having others who know the road is always a help on the journey. You're not alone in thinking the medics & occasionally the DSNs too damning. The application of textbooks to real life never works because people with diabolics are people not results.
I was diagnosed 8 weeks ago and the care I have had so far has been excellent. The ambulance driver diagnosed me on the way to hospital and I was admitted to critical care with DKA and three days later moved to a general ward where staff took the time to re-assure me and help me learn how to take insulin so I could go home. I see my DNS twice a week (and can phone her if I need to) and the dietician once a month. I have had loads of blood tests, a foot care appointment, a practice nurse appointment and invited for a flu jab next week. It has taken a bit of time to sort out my repeat prescritions but once I explained to the practice receptionist what I needed and why, there were no more problems. My GP has been very supportive and is clear that the diabetic team are the experts and I should work with them to nderstand as mch as I can. The aim being to be my own specialist. I'm going on a carb counting course next week to help me. It looks like I've been lucky with the postcode lottery.




From the Diabetes Hands Foundation blog...

DHF Joins Diabetes Advocacy Alliance

Diabetes Hands Foundation is incredibly honored to join the Diabetes Advocacy Alliance, an organization with the drive and potential to affect a powerful, positive impact on diabetes and healthcare policy. Diabetes Advocacy Alliance is a 20-member coalition of leading professional Read on! →

Helmsley Charitable Trust Renews Support for DHF

HELMSLEY CHARITABLE TRUST GRANTS SUPPORT TO DIABETES HANDS FOUNDATION FOR FOURTH YEAR  Funding in 2015 to support major transitions in programs and leadership at Diabetes Hands Foundation BERKELEY, CA: February 18, 2015 – The Leona M. and Harry B. Helmsley Read on! →

Diabetes Hands Foundation Team


Melissa Lee
(Interim Executive Director, Editor, has type 1)

Manny Hernandez
(Co-Founder, has LADA)

Emily Coles (Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Director of Operations and Development, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)


Lead Administrator

Brian (bsc) (has type 2)


Lorraine (mother of type 1)
Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)


LIKE us on Facebook

Spread the word


This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2015   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service