Monday, 21 March 2016

Are we brave? How do we get people to take us seriously?

There was a conversation happening on Twitter on Sunday, and the general consensus was about how do we convey that diabetes is serious and isn't a joke, with out sounding like you're winging about it or with out sounding like everyone should turn around and say "wow you're so inspiring" because to those of us with diabetes, it's ordinary life. There isn't a choice for us in whether or not we decide to have to look after our diabetes, we haven't got a choice but to give ourselves insulin, otherwise we would die, so we wake up every day and go through the same routine, get out of bed, check blood sugar, give insulin, eat breakfast and so on. It becomes a subconscious routine, and I'll never forget what the nurse at the hospital told me the day I was diagnosed, she said, "One day, your diabetes will be as routine as brushing your teeth."

Most of us diabetics don't think we're brave, or inspiring, to us, we're pretty ordinary. What I will say though is that diabetes is tough, it's not easy and I think that what people on the outside looking in find commendable about those with diabetes is probably the fact that we DO get on with it. I don't question it, I don't think I've ever questioned why me, why did I get diabetes? Maybe as a joke when I say I pulled the short straw in comparison to my sister, wear glasses, got diabetes, weigh more, not as pretty (ha). Now this is where things get a bit tricky, because we do complain about it and we have the right to, it's annoying and it's irritating and there is no doubt about it that it's serious and can make you very unwell, but the question amongst those of us conversing about this subject on Twitter basically was, "How do we convey to other people how serious diabetes is, without coming across as whining about it?" There is a fine line between "Look at me, I'm so inspirational because diabetes is serious" and "I don't want to be labelled an inspiration, diabetes isn't that bad" and it just gets tricky, and I feel like a lot of people will downplay it just to avoid any unnecessary attention and I reckon that is where a lot of people can get the wrong end of the stick.

I wouldn't downplay diabetes, I would probably be the first person to jump on my high horse about it if someone made even the slightest suggestion about diabetes not being serious. Then it made us wonder, "well, where do the misconceptions come from?" I think that Type 1 Diabetics totally do themselves a disservice by contributing to the stigma against Type 2 Diabetics. The media is the biggest problem in terms of diabetes awareness, almost always reporting the wrong stuff. The Type 1 Diabetics out there who say "You caused your Type 2 from a bad diet" are not helping their own cause. In fact, Type 1 and Type 2 are no more deserving of sympathy than one another, because Type 2 diabetics may well be experiencing hardship that Type 1 diabetics don't understand, for example, those Type 2 diabetics who aren't on insulin have to be super careful with what they eat to avoid that spike, they can't take insulin to correct whatever high blood sugar may occur as a result of just eating. As long as the media is there to report the wrong things, and as long as Wilford Brimley is out there talking about his "diabeetus" us Type 1's don't really have much hope! I sometimes think we need to start with debunking Type 2 myths. All the jokes, and the idea that diabetes isn't serious and funny, all stem from Type 2 diabetes myths, and us as Type 1's are lumped together with Type 2 under the umbrella term "diabetes" and most people don't really truly understand either type!

I feel like I've gone on a little bit of a tangent here. I also feel like I've totally lost my original point, so I'm not even going to try and summarise it for you here. Hopefully you get my vibe!

Ellie

Thursday, 10 March 2016

Diabulimia

I bet you've probably never heard of Diabulimia, you probably don't even know what it is. Let me give you the Google definition that comes up when you enter the term into the search bar: "Diabulimia (a portmanteau of diabetes and bulimia) refers to an eating disorder in which people with Type 1 Diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss. Diabulimia is not currently recognised as a formal diagnosis by the medical or psychiatric communities" It has a Wikipedia page though, and it affects 40% of people with Type 1 Diabetes, and people have died and are dying from it.

I was privileged enough to attend the Diabetes UK Professional Conference last week, and one of the sessions was on "Practical approaches to managing disordered eating and eating disorders" facilitated by Jacqueline Allan, who is currently doing a PHD on the subject at Birkbeck, University of London, Jane Morris and Jenny Singer. Such an important topic, something that really needs to be talked about. One of the first questions posed to the audience was if any of them knew what Diabulimia is, a good amount of HCP's in the room put up their hands, nodding their heads, yeah they had an idea...and that response sparked half "Well done for knowing what it is!" and half "Well where are the HCP's who DON'T know what it is and need to learn about it?" The room had a significant number of people in it though, which is good, any number of people listening and learning is good. However, Jacqueline's frustration, as a person who has been through it herself, was clear. And rightly so!

A conversation that some of us were having amongst ourselves before the session started was, do diabetics in general eat "normally"? And the general consensus was not really. Scanning the backs of packets for nutritional information, weighing our food etc. isn't "normal" and from the moment of being diagnosed we're taught to essentially have almost an "obsession" over everything we put into our bodies. Every time we eat there are questions flurrying around our minds "How many carbs are in this?" "Should I be eating this?" "Where is the packet I need to see it"...we do not eat like everyone else, we have it built into us that we need to see the nutritional information on everything we eat, and for some this goes right over their heads, but for others this is detrimental in a way that may not be so clear straight away. Jane Morris also touched on this, and as a Psychiatrist who has published in the field of eating disorders she said she would never dream of having a recovering anorexic look at the nutritional information on the food they're eating but for diabetics this is unavoidable.

As I said in the beginning of this blog post, Diabulimia affects a staggering 40% of those with Type 1 Diabetes- "Disordered eating behaviours are more prevalent in adolescents with Type 1 Diabetes" As well as being surrounded with the nutritional information in our food, we are also surrounded with constant measurements...notably our weight. Every clinic appointment starts off with "Hop on the scales" What if I don't want to step on the scales?!...Do it anyway, all in the name of medicine! Our weight is scribbled down on a piece of paper every single appointment, for the consultant to see, but even worse, for you to see. However, our weight is a significant point that consultants should be paying attention to, and if they knew more about Diabulimia they may be able to spot warning signs in a person's weight at clinic; "The most frequently cited reasons for deliberate insulin omission is weight loss" and if a consultant isn't tuned into this then it becomes easy to hide. There is an array of excuses one could come up with other than wanting to lose weight. If HCP's noticed a rise in HbA1c and a decline in weight, and knew what Diabulimia is, then bingo! However, HCP's do not know enough.

It's a very well known fact that no insulin, leads to ketones and in turn becomes Diabetic ketoacidosis. From Kris' blog, (https://medium.com/@k_d85/thinking-about-dka-887e73aa9c10#.q8at8dhjk) I found data values surrounding admissions to hospital with Diabetic ketoacidosis, about 44% are due to infection, then there is pump malfunction, alcohol etc. and then there are those who's diagnosis of Type 1 comes from presenting to hospital in DKA.

19% of cases are considered due to "Non-compliance" if you are a HCP and you use the words "Non-compliance" to describe a person with Type 1 Diabetes then what are you even doing? Just stop. One of my tweets that generated 33 likes and 20 retweets was this: "HCP's need to stop using the word non-compliant, because uncontrolled diabetes is almost always a deeper set problem" And it links in to the session that addressed managing admissions with Diabetic ketoacidosis and recognising that repeated admissions with Diabetic ketoacidosis are not "Non-compliance" but are in fact a psychological problem that needs to be addressed and there is a very high chance that Diabulimia falls into this.

The mortality rate for diabetes as a disease in itself is 2.2/1000, the mortality rate for people with both Type 1 Diabetes and an Eating Disorder is 34.6/1000. Look at those figures for comparison, but also look at them and realise just how much of a problem it is. People die from Diabulimia, it's not something to be brushed off, and it leads us to question over and over again WHY is this not recognised...we can figure out the facts and figures and chuck out data values left right and centre that leave people shocked, yet it is still not officially recognised by the medical and psychiatric communities? Of course, it's probably a bit of a taboo subject, who wants to hear about a Type 1 Diabetic purposely not taking insulin? When we are taught that insulin is our lifeline? What preposterous behaviour, who wants to hear that? It makes people feel uncomfortable, that someone would do "the unthinkable" and stop taking insulin. Well guess what? It happens.And there are so many people out there in such a dark place, who feel so uncomfortable in their own skin that they would risk their lives to be thinner.

It is a tragic situation that 40% of people with Type 1 Diabetes find themselves in.

Talk about it. We NEED to talk about Diabulimia. Health Care Professionals need to know what it is, and if they do know what it is then provide them the tools and the education to be able to approach the subject. A consultant is the first line for a Type 1 Diabetic and the problems they might encounter, and they need to be clued up on every aspect of a life with Type 1 Diabetes, and even some of those struggling with Diabulimia do not know the name of it themselves, and probably will never bring it up themselves at an appointment either. Diabulimia ins't rare, Diabulimia isn't a "small percentage" it's 40%, that's nearly half of all people living with Type 1 Diabetes. Now tell me that Diabulimia is something that can be ignored.

-Ellie

Saturday, 5 March 2016

Diabetes UK Professional Conference 2016- Blog 1

I am not huge on numbers and data and statistics and all that side of things, I'm not an expert on totally understanding it but I get the idea, but mainly when I applied to come along to #DPC16 I wanted to be able to not just interpret some data from a study and put it in a blog post and share it out to people who might not even get what I'm talking about, but also to be here to give people a bigger picture, to be able to sit in on the sessions and turn it into something that I think the general diabetes community would be interested in and can relate to, if I got anywhere with my application...and I actually ended up in Glasgow. Although attendance was questionable considering the disgusting turbulence on the way here...

First impressions were along the lines of "I feel so out of place" and I did, I very much did but it would be a surprise if everyone didn't at least have a moment of, this place is absolutely huge and so professional and how am I going to navigate this!? That take on things is also me as a person and it's a part of my personality in that I go through that thought process about certain things.

The conference has around 3,000 people attending it this year, a massive number, and the SECC in Glasgow provides you with plenty of opportunies to get lost may I just add! However it is undoubtedly very well organised and there is a vast amount of information and exhibition stands and posters that you can look at all over the place. As they say the early bird gets the worm and with the thought of a possible 3,000 people attempting to register and get their badges thus inducing a very large crew, us bloggers decided we would do our best to get their earlier and get our badges, having been given our badges it was time to really get into the nitty gritty and get into the conference. There are various sessions running through out the day in various time blocks split up by coffee breaks and of course, lunch time.  

Everyone was shown to the Clyde Auditorium for around 8:45am first of all to hear the opening speeches, kicked off of course by Chris Askew, chief executive of Diabetes UK, who highlighted the current challenges we face in Diabetes care and of course I have been and continue to live tweet throughout the sessions along with the four other bloggers, what I picked up on and one of the things that stood out for me was that specific groups tend to experience worse care, especially those who are under 40 years old, which of course is something that speaks to me as a young person with Type 1 and it's interesting to see that young people genuinely aren't receiving adequate care in certain areas.
The opening words from Chris were followed by a session on "New outcome trials in Type 1 Diabetes" which lasted until 9:55. So how each session works is that there is a overall title, and it is split into three separate talks each allocated a time slot one after the other.

8:55: The Relative Effectiveness of Pumps over MDI and Structured Education (REPOSE) trial, presented by Simon Heller, Sheffield

The talk basically posed the question of "Are pumps better than MDI?" A fairly bold topic I think but an excellent topic to address and it made for a very interesting talk. In summary, the suggestion was made that all in all, neither is better than the other...if people are given the correct education and are adequately advised on how they can utilise their insulin effectively then the answer is the effectiveness of pumps over MDI is relatively not something that is completely clear and as Simon said (that is not a pun, can I just say!) "the benefit of pump technology alone remains unclear...most of the benefit in pumps comes from training in insulin use". So of course that leaves the question, is it all down to education? I won't get into it as I am merely reporting on what I have heard, but I'll leave you to ponder on that anyway, it's really interesting as a type 1 diabetic to see studies like REPOSE going on that are looking at things like this. The overall general consensus was, and can be summed up in this sentence from Simon- "we have to provide much more sustained support for self management" so there's that talk!

9:25: Peptide Immunotherapy for Type 1 Diabetes, presented by Colin Dayan from Cardiff

This was a talk that proves the CS (Clinical Science) side of things at #DPC16 and so of course I'm not going to pretend that I am a scientist. What I will say is that of course, like all of the other sessions it was very interesting and it was looking at the levels of C-peptide in people after a Type 1 Diagnosis, and studied the correlation between levels of C-Peptide and HbA1c and as the levels got lower, the percentage of people who's HbA1c was above 7.5% got higher, and I suppose now is a good time to give the definition of C-peptide "C-Peptide is a substance produced by the beta cells in the pancreas when pro insulin splits apart and forms one molecule of C-peptide and one molecule of insulin" in less technical words, and in short, the higher your level of C-peptide, the more insulin your body is naturally producing on its own, and so the study was looking at is the role that it plays in Type 1 Diabetes and I will stop here because I again, can't pretend as though I'm totally clued up on it!

9:55: Exercise for beta cell preservation in Type 1 Diabetes: The Exercise for Type One Diabetes (EXTOD) trial, presented by Rob Andrews from Exeter and Parth Narendran from Birmingham

The question being posed in this talk was "does exercise preserve beta cell function?" It is very well known that Type 1 Diabetes is characterised by the loss of insulin-producing beta cell function, in turn resulting in no production of insulin from the body. Some of the main points were on how the rate of beta cell loss is slightly less aggressive in adults than it is in children so it's important to look at this, however it proved difficult getting people to stay in the study and also that a fear of hypoglycaemia is a significant barrier with exercise and what was also touched on was how are those barriers overcome these barriers over come to get people to exercise more. And a big part of the
EXTOD study was about empowering people to exercise more and it was also mentioned that people
are told by their HCP's to exercise more but from a survey it's not looking as though some know exactly what they're talking about when it comes to exercise but also can't give the adequate advice.

So there is what I gathered from those three initial sessions and I thought I would break them down and talk about them individually for the beginning of this blog post just to give people an idea of how the sessions play out and the kinds of talks that go on. Immediately just from experiencing those three talks there is an instant sense of amazement and awe when you realise you're in the presence of so much knowledge and so many HCP's who are there and willing to learn from one another and willing to find ways to improve the care that they provide. Very interesting to be able to be a part of that.

Later on in the day I attended different sessions such as "Diabetes in Glasgow" which was probably the most interesting session of the day for me personally as we looked at Diabetes in Glasgow and how they are trying to make it a 'diabetes friendly city' and there was talk about how some are "stuck in a 1949 model of healthcare where people come, they have a lecture, they leave, we forget about them" and that's an issue that's affecting not just Glasgow but other areas too and a consultant paediatrician from the Netherlands presented 'Diabeter' which is a service in Amsterdam for young people that is not in a hospital and so not confined to hospital rules and guidelines and what stood out to me is he said that hospitals don't allow round tables, they have to be square apparently so 'Diabeter'? They have round tables. Their belief is that it is "about looking at how diabetes fits in to your life" and it is not "always about numbers, it is about you" which I think is excellent and links in to a lot of questions about why more effort isn't made to try and get these kinds of services replicated elsewhere.

What I want to touch on last but not least is a topic that needs to be talked about more, which is mental health. And while the topic of mental health is not widely discussed it seems there was two talks yesterday which touched on the subject, there was a session on "multidisciplinary approaches to managing admissions for DKA" I didn't attend that session but instead went to the other session about mental health which was a workshop on "practical approaches to managing disordered eating and eating disorders" However although I didn't attend the first session I did learn something from it from the other bloggers at the conference and learnt that it is basically saying people who are constantly in DKA need more psychological support because a lot of the time that is where the issue lies and that is the reason for the admissions. That links in though quite well with the Eating disorders session because one of the main things I took away from that and what generated a lot of retweets was the idea that HCP's need to stop using he word "non-compliant" because a high hbA1c is not always a straight forward answer but can be something far more serious like  'diabulimia' which affects 40% of those who have Type 1 Diabetes and involves not taking any insulin in order to lose weight. And it is something that should be talked about more because it affects a lot of young people with Type 1.

All in all, DPC day one was very full on and full of lots of very interesting information that I feel honoured to be able to hear first hand and it's amazing to see so many HCP's come together with the collective desire to improve diabetes care and as a person with type 1 myself it's wonderful to see that. So here I am having had a good think about the sessions and my brain was finally feeling full of sentences for the blog and different ideas that it decided that it wanted to regurgitate all of it onto this one first blog post, which has turned out to be very long but it's hard to give short highlights of such a massive event.

Anyway, if you read this and got to the end, well done, good job for sticking around I hope I didn't bore you!

-Ellie