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


7 comments:

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  2. Great blog Ellie, so please you got to attend DPC16.

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  3. OMG Ellie, 40% suffer with diabulimia??? I had no idea it was that high. That's a frightening statistic. I think the mental health aspect just doesn't get enough support in most cases, and it's going to be crucial to changing outcomes. The teens who said they didn't feel like they were doing anything right really did it for me. How can anyone keep going with something that requires such intensive daily management, if they feel like they're never making any progress? It is such a mental condition (in both senses of the word!), that I don't think HCP's can possibly hope to achieve what they want to with their patients unless they address it intensively.

    It was lovely to meet you, and for what it's worth I also felt completely overwhelmed on the first day!

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  4. OMG Ellie, 40% suffer with diabulimia??? I had no idea it was that high. That's a frightening statistic. I think the mental health aspect just doesn't get enough support in most cases, and it's going to be crucial to changing outcomes. The teens who said they didn't feel like they were doing anything right really did it for me. How can anyone keep going with something that requires such intensive daily management, if they feel like they're never making any progress? It is such a mental condition (in both senses of the word!), that I don't think HCP's can possibly hope to achieve what they want to with their patients unless they address it intensively.

    It was lovely to meet you, and for what it's worth I also felt completely overwhelmed on the first day!

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  5. I was shocked last week when I read the diabulimia statistic. having been a PWD for almost 42 years I guess this one flew right past me. thank you for including such interesting information in your blog.

    I referred your blog for inclusion in the March 7, 2016 blog page of Tudiabetes.

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  6. Nice blog Ellie. DWED stats on Diabulimia, especially amongst teens, are very disturbing. I wrote a little about it here (given how little Diabetes UK seems to care) http://www.bit.ly/d_eating to try and add to the raising of awareness.

    Type 1 diabetes has terribly high incidence of and mortality rate with eating disorders yet it seems rarely discussed or mentioned. Perhaps now intention for better coverage.

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