Following the great blog post of fellow Diabetes Family member Kev Winchcombe http://circles-of-blue.winchcombe.org/index.php/2013/09/17/diabetes-uks-big-event-2013/ i've been tasked with writing up my own musings of the Diabetes UK Big Event on Saturday the 14th of September 2013.
I have to admit I usually avoid things like this, I know a lot of other people want to connect with other people with diabetes, its not ever been something high up on my agenda, strange given I help run a Support Group in my local area www.north-down-and-ards.diabetesukgroup.org but nonetheless true.
This time I was kinda forced into attendance, as a member of the Council for People living with Diabetes (CPD) our meeting had been moved to the Big Event day, coincidentally there was a need for volunteers on the day...not that i'm a great believer in coincidence...and so it turned out...my fellow CPD members from NI and myself got roped into helping out during the day - i pulled the 'MUG' straw - Morning Guide to the Venue and Room Monitor for two of the sessions.
Beginnings
The day started as a cold one, and alas it turned into a wet one, a hardy band of volunteers stationed at Hammersmith Tube & Bus Station dressed in our 'dress-blues' and maps in hand all ready to guide travellers to the Novotel and start their day at the Big Event off with a little less hassle.
As a worrying sign of what was to come the first person I came across at my guiding point was none other than Richard Lane the President of Diabetes UK, and he was lost, and I got the brunt of a mini-rant, fair play to Richard though as he made a point of finding me in the hotel later that day and apologising for his rant and thanking me and my fellow guides for our work, he'd had lots of positive comments from attendees about how friendly and helpful we had all been.
I have to say the Guide part was really enjoyable, I got to meet lots of really friendly people who were really glad to have someone to point them in the right direction, a great mix of what makes up my Facebook Group https://www.facebook.com/groups/408751785902265/ The Diabetes Family - People with Diabetes of all types, parents, pals, partners and professionals.
Alas one down side to my guiding duties was that I missed my first planned session which was to have been Diabetes Care in Your Area, but a rather cold and wet me much preferred a cup of tea and a wander round the stands warming up to walking in late!
The first session ended at 11.30 and then the enormity of what the Big Event was hit me - a mass of people of every age and character and then a tap on the shoulder and a face with a large smile and a warm handshake - i'd finally got to meet Kev Winchcombe in person!
Midday came round very quick and so I was off to my first session 'Type 1 Research' a smallish room was being used for this session, and it soon became apparent that the room was going to be full to busting, which presented a fellow Council member, Dilys Sheppard, with the unenviable task of turning people away, and alas volunteers in our 'dress-blues' where the first to be evicted, or you could stand, I chose to stay, so more standing it was :(
Research
Type 1 Research - An introduction from Richard Elliott, Research Communications Officer at Diabetes UK highlighted the work that has gone on through Diabetes UK in the past for Type 1 research and a pointer to the charities Research Timeline http://timeline.diabetes.org.uk/ - 1/5th of Diabetes UK's budget is spent on research, though there was also the negative highlight that less than 3% of people are involved in a clinical trial http://www.diabetes.org.uk/Research/Take-part-in-research/
The main talk was then given by Yuk-Fun Liu from Kings College London, she focused on 3 areas -
- Artificial Pancreas
- Stem Cell, and her own area
- Immunotherapy
Stem cell research will always have ethical issues for many, but it is a area which could offer huge potential for the creation of new beta-cells
Immunotherapy is probably the one a lot of people will have heard of through the news of the potential vaccine for Type 1 Diabetes, though in a way it not really a normal vaccine, where the body is given a controlled dose and learns to fight the infection, in the Type 1 vaccine its about training the body to recognise the good and leave it be. The trials here though are very much with the newly diagnosed.
The Question and Answer session through up the usual query on how long - a lot of people used to say the cure will be here in 10 years, in this case it was 20 years.
There was also the question on what about those who have been Type 1 for sometime...and yes there was good news of sorts...the work on Stem Cell and Islet treatment could see cells being implanted back into people with diabetes, but the body will still attack these new cells, Immunotherapy could be the answer to help protect those new cells, and as such there is hope!
My next two sessions saw me being Room Monitor, so forgive me if i get a bit brief here, I was mad mic man for a bit and didn;t really pick up as much as I probably should have!
Discrimination
The first session was 'Discrimination' a very sparsely attended session with only 34 people, we couldn't compete with a repeat session of Type 1 Research or Advanced Pumps and CGM's and that hypo dog!
The session here was led by Gavin Terry from Diabetes UK, and the main speaker was Paul Jennings, a Senior Associate - the focus was on Employment and Diabetes and reasonable adjustments.
One interesting point I got from this session was that no employer should ask you in the application process if you have a disability anymore, this should only be done post recruitment, unless the position in question is one where having a medical condition could be an issue, then an employer can ask.
No employer or service provider should discriminate against someone with diabetes, debate in the room became quite heated on issues such as employers not giving rest breaks for food and checking blood sugars, children being excluded from school as the diabetes trained teacher was off that day.
Paul did his best to field the questions, but he did caveat that each case has its own individual issues, Gavin did point out that Diabetes UK has an Advocacy Service, alas of one poor lady on her own who is very busy, but is contactable and will do her best to help.
Emotions
My last session was Emotional Issues in Type 1 Diabetes, and in contrast to my first Room Monitoring session this was a very different animal, over 130 in the room!
I was a bit headless...and really quite useless chicken in this session, by the time i found who was speaking they'd asked their question - people will not wait for the mic!!
I did pick up the following things - in that room with 130 people a question was asked about how many had access to Psychological Support - and the surprising result was as many as 20 hands went up - the speakers did recognise though that this was nowhere near enough, the cover is patchy and poorly resourced in terms of time.
Think Positive - The brain is like velcro for negative experiences, but teflon like for positive...notice what is good and savour it...every day find 3 things you're thankful for and savour it!
The session was very inter-active and the feedback from others who'd been in the room was very positive, some even saying it was the best session of the day.
Conclusions
So I ended the day tired but happy, would i willingly go to one of these events again if i wasn't being volunteered into it? Honest answer? No i probably wouldn't...but the reason why is more to do with the kind of person I am and my relationship with my diabetes rather than what the event was about....I do my sharing in small groups or on-line....one thing I left out from the research talk above was the fact that not one persons diabetes is the same, each and everyone of us will have our own reaction to it from a physical point of view, but just as much so, each of us will have our own psychological relationship with diabetes, mine is to care of it, but open enough to help others, whilst remaining ME rather than that bloke with diabetes who talks about nothing else :)
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