New(ish) member from Diabetes UK

[Stefan Diabetes UK]

Hi everyone,

My name’s Stefan and I work with Diabetes UK in the Diabetes Voices team. I registered a little while ago but thought it was time to properly say hello!

Basically, we in the Diabetes Voices team support people living with diabetes to raise awareness of the condition, improve care services and change policy for the better. I know quite a few forum members are already Diabetes Voices so I’ll spare you the full spiel, but you can find out more here: https://www.diabetes.org.uk/Get_involved/Campaigning/Diabetes-Voices/

Some of you probably seen me trying to recruit members for the National Diabetes Audit in the Pregnancy Forum a few weeks back, and I’m very grateful for the many high-quality applications delivered by members.

I wanted to properly introduce myself though as I’m sure they’ll be many events and campaigns in the future in which we’d love to have forum members involved.

Similarly, if you want to campaign on diabetes care services locally, we’ll be happy to offer our support and advice.

I’ll keep a close eye on the forum but do also feel free to email or ring us whenever (contact details in the link). If not me one of my colleagues will be able to help out with anything or at least point you in the right direction.

That’s probably more than enough for a quick hello, but give me a shout with any questions. Very much looking forward to getting involved in the community!

Thanks,

Stefan

 

[Northerner]

Hi Stefan, welcome to the forum 🙂 One issue that I would like to see addressed is misdiagnosis, particularly Type 1s misdiagnosed as Type 2 and consequently receiving poor support and inappropriate medication. Often, the misdiagnosis is due to undue attention being paid to the person's weight and/or age. There are even some GPs and nurses who believe Type 1 can only be diagnosed in childhood. We have had many, many members here on the forum over the years who have struggled and had to battle very hard to receive a correct diagnosis and treatment, and I do worry about the people who are getting these problems but do not have the support of a forum like ours.

I've rarely seen this discussed in the media or in publications, and think awareness needs raising both with the public, so they know it's not always clear cut, and the medical profession. Do you think Diabetes Voices could help with this?

 

[AlisonM]

Hi Stefan, welcome. I agree with what Northe has said, I'm one of those myself. It was only when the GP realised I wasn't going away that further tests were ordered that established I have slow onset T1.

My biggest bugbear though (there are others), is the struggle so many T2s have getting access to meters and test strips. One of the most vital tools in the arsenal of any diabetic is testing. We learn so much about ourselves and how diabetes affects us by testing our blood sugars, yet the NICE Guidelines (and their equivalents) give the 'Experts' a huge loophole to slip through, so T2s are often denied the opportunity to use this tool. It is, in my opinion, a false economy and terrible short term thinking, since testing helps many of us reduce our blood sugar levels, and thus, helps stave off the complications that cost the NHS so much each year. A campaign to change the guidelines would be something I could wholeheartedly support and I hope you at DUK will seriously consider it.

 

[KookyCat]

I concur with Northerner, as another late blooming type 1 I had no idea it could just randomly happen at age 40, and neither do most of the medical professionals I've seen. I think inadvertently DiabetesUK contribute to the continuing myth because almost all media attention about type 1 is based on children. Certainly when talking about diagnosis. If it wasn't for this forum and the brilliant people here I'd have felt completely alone, because I didn't exist as a category. Lots of advice for parents, teens etc but nothing for a fully grown adult suddenly flung into the joy that is type 1. I'm sure if I'd had a BMI of 26 instead of 16 id have been packaged up as a classic type 2, because even whilst in hospital in DKA some of the doctors were insistent I had to be T2 because I was too old to be T1. I feel very strongly that if we want to improve the lives of people with diabetes we have to improve diagnosis first.

Anyway I'll stop ranting and say welcome to the forum 🙂

 

[AlisonM]

And another thing... Sorry Stefan, but you did ask.

Education for T2s is either, non-existent or out of date. If it exists at all, it's not certain that folk will be allowed to do it, I've never managed to bully or blackmail my way onto one and, if it wasn't for this forum and the help I found here, I wouldn't have a clue. Diet sheets for instance still include significant amounts of Carbs, which many of our members have reduced to varying degrees, but with noticeable success. There is little practical support or advice on exercise or how to cope with the changes needed to manage the disease. Too people have joined us, newly diagnosed or not, with no support or advice of any kind. They are often confused and frightened and frequently have been made to feel bad because 'they did it to themselves'.

Education is needed, not just for diabetics (and their families) but for front line staff as well, GPs and surgery nurses especially. There's another campaign for you.

 

[Mark T]

Oh dear, we didn't frighten off Stefan did we?

 

[Stefan Diabetes UK]

Oh dear, we didn't frighten off Stefan did we?

Don't worry I'm still around 🙂 You all raised such great points though I wanted to wait til I had a bit of time to look into them and respond properly. We choose what we campaign on based on what people living with diabetes think is an issue so its always good to get feedback.

On the specific points mentioned:

Northerner I know people in Diabetes UK are working with various medical professional bodies and the NHS to improve training and diabetes awareness. But the issue of misdiagnosis is a good point to raise; I know there was some media attention on this a few years ago but sounds like it is still an issue.

Kookycat I know you raised similar points to Northerner but the bit about late onset Type 1 diabetes is also a very good one-is now 1 in 5 people with type 1 are diagnosed over 40. On the issue of support after diagnosis, I guess a large part of that is education, and access to education for people living with diabetes is something we'll be launching a campaign on in the next few months.

AlisonM Both very good points well made. Access to testing strips is an issue we've raised a few times of the last couple of years because as you rightly say its a huge, practical issue for people living with diabetes.

As I said access to education will be a major focus for us in the next few months but just to emphasise the campaign will be focus on both Type 1 and Type 2, for the newly diagnosed and for those who have had diabetes for years. Would be great to have everyone's involvement in this but I'll keep you posted on that elsewhere.

Finally, if there is an issue particularly concerning diabetes care or services locally you'd like to take action on, this is something we could possibly support you with. Often Diabetes UK local support groups are a good place to find other campaigners, although you are all of course in the good position of also having an online community to work with!

Feel free to come back to me on any of these points, add to them or drop me a message via stefan.donnelly@diabetes.org.uk. There is a limit to how much we can do at any one time but as I say its great to get ideas and opinions on campaigns so thanks very much for the responses!

 

[Mark T]

It's good that we didn't frighten you off!

I think education and testing should be DUK's main focus for T2's (note I didn't comment on T1) rather than it's current focus on feet and getting all the tests. And you certainly won't get any donations/subscription or activity as a Voice out of me until the DUK changes track.

That's not to say getting all the checks and getting feet checked isn't important - it is. But many of the checks are for signs of neuropathy and related issues. Neuropathy is to do with poor control (like any sweeping generalisation, there will of course by exceptions). If your HbA1c is 10% then eventually you will get problems. Many have poor control because the NHS refuses to give them any support to improve it.

The whole point about education and testing is to bring your HbA1c back down to more normal levels. Without that testing and education - or course you are going to have a problem with having to treat the impact of the disease.

And then there is the idea that a yearly HbA1c actually tells you anything at all... A test that tells you your average over the last 1/4 of a year at best...

 

[pippaandben]

As a Type 2 diagnosed 2011 and onto insulin within 2 years a campaign to allow us Type 2s to access the Expert course for Type 1s - or part of it -would be extremely beneficial.
I was not overweight and aged 67, no known genetic element as I am adopted so possibly LADA But Dr refuses to test due to cost. As I understand it if officially recognised as LADA or type 1.5 I would have access to this course.

 

[KookyCat]

Don't worry I'm still around 🙂 You all raised such great points though I wanted to wait til I had a bit of time to look into them and respond properly. We choose what we campaign on based on what people living with diabetes think is an issue so its always good to get feedback.

On the specific points mentioned:

Northerner I know people in Diabetes UK are working with various medical professional bodies and the NHS to improve training and diabetes awareness. But the issue of misdiagnosis is a good point to raise; I know there was some media attention on this a few years ago but sounds like it is still an issue.

Kookycat I know you raised similar points to Northerner but the bit about late onset Type 1 diabetes is also a very good one-is now 1 in 5 people with type 1 are diagnosed over 40. On the issue of support after diagnosis, I guess a large part of that is education, and access to education for people living with diabetes is something we'll be launching a campaign on in the next few months.

AlisonM Both very good points well made. Access to testing strips is an issue we've raised a few times of the last couple of years because as you rightly say its a huge, practical issue for people living with diabetes.

As I said access to education will be a major focus for us in the next few months but just to emphasise the campaign will be focus on both Type 1 and Type 2, for the newly diagnosed and for those who have had diabetes for years. Would be great to have everyone's involvement in this but I'll keep you posted on that elsewhere.

Finally, if there is an issue particularly concerning diabetes care or services locally you'd like to take action on, this is something we could possibly support you with. Often Diabetes UK local support groups are a good place to find other campaigners, although you are all of course in the good position of also having an online community to work with!

Feel free to come back to me on any of these points, add to them or drop me a message via stefan.donnelly@diabetes.org.uk. There is a limit to how much we can do at any one time but as I say its great to get ideas and opinions on campaigns so thanks very much for the responses!

I do think education for people with diabetes is important (pippaandben, that's ridiculous, we don't have access to the Xpert course at all here regardless of type but if you use insulin you should be entitled to it 😡), but I think the real point is that the medical professionals need educating first. Mark is absolutely right, a motivated patient who wants control and support to get it shouldn't be an inconvenience, they should be a doctor's dream. DUK should in my opinion be pushing for a better ongoing support strategy for people with diabetes, not a list of absolute basics that don't actually reflect good care, or health planning, or even care. Emphasising a checklist of key performance indicators hides a real problem in my opinion. A patient who gets a blood test, some perfunctory measurements, retinopathy screening and a course, isn't a patient who is getting care reflective of their needs. I'm not trying to give you a hard time Stefan (honestly) I just think it needs to be said.