A Twitter Chat with Dr. Neil Black (@RneilABlack) – Wednesday 17th June @8-9pm.

Dr Black, from the Western Health and Social Care Trust in Northern Ireland, will lead the Twitter chat this week focusing on diabetes communication and awareness. Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:

• Go to your Twitter account
• Follow the discussion by searching for #ebnjc and click on “All Tweets”
• Add the EBN chat hash tag (#ebnjc) to your tweets to join in

Written by Dr Neil Black:

I feel really privileged to have been asked to write this blog during Diabetes week which is about spreading awareness regarding diabetes.  I’d like to use this to share two things that I’ve learnt from people living with diabetes themselves. Whilst I’ve been involved in diabetes care for almost 14 years, this was turned around completely about 3 years ago. What happened?  Well, I really started to listen to people living with the condition.

What do people with diabetes want those who are newly diagnosed to know? How do we talk to people who have been newly diagnosed with diabetes? How can we communicate about complications of diabetes? Last week’s @OurDiabetes Tweetchat was revealing and added much to my awareness. A strong running theme was that people wanted to be told that they weren’t alone and how to connect with others with diabetes. While this was a group of people with type 1 diabetes, the points ring true for those with other forms of diabetes. A knowledge even that someone exists who understands what you are going through could make a big difference. Actually being able to get in contact with others with your type of diabetes could be a life-saver. People wanted to know that while having a new diagnosis of diabetes takes up a lot of time in your life, that you had to make room for it but not let it set the agenda for the rest of your life: diabetes should fit around your life, not life around diabetes. They wanted to know how to manage it themselves and be supported to do so. Talking about a new diagnosis of type 2 diabetes is different, because it has likely been there undiagnosed for years. Sometimes this means that we discover it only when that person presents with a complication of diabetes. I tell people that it is good news they have been diagnosed as now we know that they need protection and how to give it, where prior to diagnosis they had the condition but were at greater risk of the complications. Talking about complications is a sensitive subject in itself. People living with diabetes tell me that they want tact and for us to concentrate on how to reduce risk – they know they could develop complications already and what matters to them is how they can protect themselves.

I’d like to come back to types of diabetes as, after all, it is Diabetes Week. I mentioned earlier that those with established type 1 diabetes want people with newly diagnosed diabetes to know that they are not alone and how to contact others with their condition. Well, 90% of people who have diabetes have type 2 and only 10% have type 1. It’s a common misconception that people with Type 2 diabetes are to blame for their condition. It is true that a sedentary lifestyle, excessive unbalanced dietary intake and being overweight increase the risks of Type 2 diabetes. It is also true that making lifestyle changes and losing weight reduce the risk of developing Type 2 diabetes or delay its onset.  However, many people with type 2 diabetes have a family history of the condition and if you have one sibling or parent with Type 2 diabetes, your lifelong chances of developing it are about 50% compared to about 5% for the general population. So, people with Type 2 diabetes have inherited strong genetic factors that led to their condition. It seems less reasonable to blame people with Type 2 for their diabetes. Interestingly, people with other forms of diabetes may also lay blame on those with Type 2 diabetes for their condition. I hope that seems less reasonable now.

People with Type 1 diabetes can present as a medical emergency in diabetic ketoacidosis but, even if they do not, require insulin injections from the start. A temporary recovery of pancreatic function lasting a few to several months (the ‘Honeymoon Period’) can occur with the person needing very low insulin doses or no insulin at all, but eventually the pancreas cannot make enough insulin and insulin injections or infusion then needs to be lifelong. It is better to think of insulin as a vital life-sustaining hormone for people with Type 1 diabetes, rather than a ‘treatment’ as consistent lack of insulin administration inevitable leads to becoming medically unwell and death if untreated. We should respect people who live with Type 1 diabetes and respect the insulin they take.

Less common forms exist, for example Latent Autoimmune Diabetes in Adults (LADA) appears to be type 2 diabetes at diagnosis but, sometime later, the person develops a dependence on insulin as their pancreas has been attacked just as in Type 1 diabetes. We know that 10-15% of people with apparent Type 2 diabetes actually have LADA which is really part of the spectrum of Type 1 diabetes and together form a spectrum of ‘autoimmune diabetes’. Secondly, about 1-2% of people in the UK with apparent Type 1 diabetes actually have a genetic cause of diabetes called Maturity Onset Diabetes in the Young (MODY). This is important as we think that we are only aware of 20% of cases at best. Making a diagnosis could mean that we can stop insulin therapy which otherwise would be lifelong. Thirdly, gestational diabetes starts in pregnancy and poses risks for the mother and child before, during and after delivery. While it usually resolves immediately after delivery, it usually recurs in later pregnancies and indicates that the woman’s lifetime risk of Type 2 diabetes has risen from 4-5% to 40-50%.

Diabetes week gives an important chance to get these points across. Diabetes is not about blame, but about respect for the person who lives with it. People who live with diabetes need support from each other and healthcare professionals. We can only deliver good care if we follow these principles.

Questions for consideration during our chat:

Q1: How do you think we can best support people as they are informed of newly diagnosed diabetes?

Q2: Do self-help groups for people with diabetes work?

Q3: What are you doing during diabetes week at your place of work?

Q4: Have experienced barriers/support to good provision of education for people with diabetes?