Pop4Diabetes 2015 with DRWF

pop4A couple of weeks ago Jane and I were invited to attend the Pop4Diabetes ball as a thank you from DRWF for things I’ve done for them. Claire and Lee from DRWF hosted us for the evening, alongside other volunteers such as Lynwood who does a lot of fundraising and other events for them.

What made the evening more special was that my Dad and step-mum Liz were also invited by Claire and Lee. My Dad has had Type 2 for quite some time but it was only Amy’s diagnosis which spurred me on to learn more about his Type 2 and ultimately to get him to learn more about it. Since the DRWF Wellness Day in 2013 Dad has volunteered for DRWF, helping them with mailshots, poster deliveries and many other things. He’s given a good deal of time helping out for the good of others so it was lovely to see him be invited to attend the ball too.

Pop4Diabetes is an annual ball like event, spearheaded by Iris Board who’s son Shane was diagnosed with Type 1 Diabetes several years ago. Shane is an actor/singer/presenter who has released various Type 1 oriented songs over the years, including the recent Find A Cure.

The event is frequented by celebrities past and present and this year Anita Dobson – Angie from Eastenders – was there supporting the event, along with internet star Jack Jones.

Music and dancing is the theme behind this event and it was great to hear songs from Shane and others, as well as songs and dancing from Naomi Bowring, a talented dancer/singer and Miss England candidate. There was dancing from local groups, some made up of adults only, others made up by kids, as well as a type 1 choir who sang a song.

Pop4Diabetes also gave out some awards to a few kids with Type 1 who had achieved good things over the years. It was lovely to see the smiles on the kids who received these awards and the pride beaming on theirs and their parents faces.

I really enjoyed the event but for me the highlight was being able to spend some time with DRWF and their supporters, and especially being able to chat all night with Lee (DRWF), chatting through all topics Type 1 related.

Pop4Diabetes was a great event, Iris has done well to pull it together and raise thousands of pounds yet again for charity.

The Bournemouth Echo did a nice write up about this year’s Pop4Diabetes event if you would like to read more.

Portsmouth’s second SweetMeet – another privileged invite

amyprize2Amy shows off the carb counting scales she won at the SweetMeet

In the middle of a busy weekend – clinic yesterday, TeamBloodGlucose cycle ride tomorrow – Amy and I had an invite to the second SweetMeet organised by the team at Portsmouth’s QA hospital. For us it was another privileged invite being personally invited by Dr Partha Kar for the second year running.

Amy and I met Laura and Tanwen as soon as arriving, then with a breakfast bacon butty in hand had a nice chat JDRF’s Sue and DRWF’s Lee. Helen the pump rep from Roche was there and to our surprise our Animas rep Emma arrived, pleased to see Amy and to hear that she was getting on well with her Dexcom CGM, which Emma trained us in only two weeks ago. It’s really lovely coming to events like these and knowing so many people, it’s like one big family.

Kicking off with a great team

SweetMeet2 was officially opened by Lisa who referred to herself as just a nurse before introducing the team who had given up their spare time. With the plan for the day read out Dr Partha Kar stepped up to start the day off, but before doing so he praised lead nurse Lisa for the dedication and hard work she puts in keeping the department running.

66 years and the future

nhs creation leafletWith the NHS being formed 66 years ago to the day Partha outlined the changes in the NHS and in particular funding, explaining that funding had been matched to requirements from 1948 until a few years ago when funding plateaued, starting a funding gap which is unlikely to close any time soon. But there is hope and it will be found by making sure the right people perform the right jobs, freeing up the Wizards (Consultants) by getting the Gatekeepers (GPs) to perform the tasks they can – these references coming from Nigel Mathers and Paul Hodgkin’s 1989 story about the NHS “The Gatekeeper and the Wizard”

Speed-dating with the professionals

Next up it was time to speed date with the professionals, with the audience staying at their tables and professionals moving around the round to ask/answer questions during each 7 minute slot. Seven minutes goes very quickly when questions are being asked and it’s amazing how much you can cover during that time.
The podiatry and retinopathy sessions explain a lot about the processes that we know very little about and gave answers about what you should expect (nerve tests on bottoms AND tops of feet) and by whom (GP surgery nurse).
Partha did a session and an important message came across: people can and should help themselves, a message I’ve lived by since discovering the #DOC (Diabetes Online Community). The bigger question though is how to get those not already engaged to become so as those at the SweetMeet were clearly engaged already.

My favourite speed date

My favourite speed date – this sounds awkward 🙂 – was with Dr Iain Cranston, who chatted about Abbott’s Flash Glucose Monitoring, something I’m looking forward to being announced officially in September at EASD in Vienna – like many I’ve had an invite to go but can’t quite justify it. It has the potential to revolutionise finger-stick tests as it promises to do away with them, instead relying on swiping a NFC device across a sensor which is changed every two weeks. I didn’t think much of this technology initially but when I realised that it stores the last 8 hours of tests I realised it could be used as a non-alerting CGM, which is just fantastic. Fantastic that is if Abbott pitches it at a price to rival meter strips.

Breakout session 1: are all carbohydrates equal?

This year saw the introduction of two breakout sessions, with Amy and I going to the one of carbohydrates.
With a session of 45 minutes, 15 people and two dieticians it was like being a kid in a sweet shop, although obviously the first rule of SweetShopClub is that you don’t talk about sweets in front of dieticians. 🙂
Starting off with some simple carb-counting we moved on to GI which raised some interesting discussions, based bolusing for low-GI and wave bolusing techniques for pump users.
It was the first time I’ve been able to talk sensibly with a dietician about LCHF (low carb high fat) diets, their effect/usefulness and more importantly whether they’re suitable for kids, or can be adapted to be so.

Breakout session 2: new developments for type 1 diabetes

Dr Iain Cranston held our second breakout session which started with us all stating the new developments we wanted to know more about. With islet transplants and stem cell research already on the board (two things which could go hand in hand to get people off insulin) I offered a couple of other things: smart insulin and inhaled insulin.
Dr Cranston’s knowledge of developments is great and filled us all in on each of the developments, answering my questions about beta-cell replacement whilst super-T cells still exist.
How often do you get the chance to ask questions like this, that’s the beauty of something like the SweetMeet. I have a feeling that if the allocated time hadn’t run out Dr Cranston and I could have chatted about stuff like this for hours.

A patient’s experience: educate yourself

Lee Calladine, spoke about his life with Type 1 diabetes which he was diagnosed with aged 33. As DRWF’s Event Organiser Lee organises events such as the DRWF Wellness Day South which I attended two weeks ago as well as last year.
Lee’s message fitted in nicely with Partha’s: educate yourself, find out about your diabetes and your gains will be great. Since educating himself Lee feels more in control, has got his HbA1c lower and minimised his risk of complications and that’s something we all want.

Thanks Sue

The second SweetMeet was a huge success in my opinion and Sue, one of QA’s dieticians, should be thanked by all who attended for organising a great event. Well done Sue, we really enjoyed it.

And finally, Amy wins another prize

At last year’s event Amy won a bottle of champagne in the carb counting quiz, which of course was commandeered by myself and consumed shortly thereafter. With high hopes she entered this year’s quiz and alongside a few others won another prize, this time a set of Rosemary Conley Nutritional Scales which will hopefully be very useful for carb counting.
Here she is with them:
amyprize2

DRWF Wellness Day – 21st June 2014

drwf logoI joined many other friends and local people with diabetes at the 6th Annual Diabetes Wellness Day South, held by the Diabetes Research & Wellness Foundation in Southampton. Last year’s event was a good one so I had high hopes that this one would be as good; it was. The Wellness Days are whole day events which cost £5, starting at 9am and finishing at 4pm, with a lovely lunch included (worth the £5 alone). There’s many presentations plus there’s the opportunity to ‘Meet the Experts’ during a mid-morning break.

What made this day so good for me was not just the presentations/demos/food/free-biscuits but the fact that I shared it with friends from the diabetes online community and more importantly my Dad who recently become a volunteer helper for DRWF. Dad has Type 2 Diabetes, something he’s lived with for years.

Starting the day off

Dad and I arrived at the same time and it was lovely to see the DRWF people chat with him and knowing that he can talk the hind legs off a donkey I left them to it. I bumped into Michelle and had a chat, said hello to Helen, then Lee, Sarah, Claire before heading off to chat with my friends Tanwen, Kelly and Steve. It looked like the event itself might get in the way of networking 🙂

Human Islet Cell Isolation and Transplantation

Professor Paul Johnston gave a very interesting talk about his work with islet cell transplantation, cells which he explained only form 2% of the pancreas, so most people with Type 1 have a pancreas which is 98% ok. It makes sense then the a transplantation of islet cells is a better option than a full pancreas transplant giving the risk of rejection for a new organ. I had no idea how quick the transplantation process was for the patient, less than an hour. Just imagine that, you spend years and years dealing with diabetes and in less than hour you’re cured, at least for a few years. Obviously it’s not quite that simple, there’s a little more to it.
Rae-Marie Lawson spoke about the islet cell transplant she’s had and how she’s getting on now, an uplifting story considering given the lack of hypo awareness she had.

Meet the Experts

This breakout session gave everyone the chance to have a chat with the representatives from various companies, NHS departments and charities.
There was another group there with a stall, the Sugarbuddies, a new initiative for peer support for the newly diagnosed Type 1s in the area. I’m proud of Laura, Kelly, Tanwen, Steve and Meghan who are a driving force behind this project and with their backing it’s sure to do well.
I spent much of the breakout session speaking with Mandy from PEDS (Ponies Educating Diabetics and Siblings) which is held at the local stables where my eldest daughter Emilia has been doing her Duke of Edinburgh volunteering recently. I’d never met Mandy before but she recognised me instantly from my peer support article in the Daily Echo. Mandy was lovely and it’s a great thing she’s doing with PEDS.

What the dog nose but can’t tell you

Next up was a talk about Medical Alert Dogs and how they help with alerting their owners that they (or their child) is going too low or too high. I’ve not only seen this talk three times now but I’ve seen Claire Pesterfield’s dog Magic alert her that she was hypo so I understand how good they are. Whilst I also love the idea of having one for Amy I’m not sure our cats would like it.
I also had another idea…HypoMeerkatTweet

Supermarket Sweep

Sarah Woodman (Diabetes Specialist Dietician) – another one of the Sugarbuddies – held a session talking about food, or rather food choices, about labelling and healthy options. I’m not sure much of it was new information to people with Type 1 giving the regime they have to follow carb counting everything but I’m sure the majority of the audience (of Type 2s) would have learned a lot.
Given some of the recent changes in food advice I was pleased to hear Sarah get a particular point across: SupermarketSweepTweet
I love eggs and eat quite a few per week, my total cholesterol is 2.58, so clearly that old advice was rubbish.

Diabetes, Ramadan and the Hajj

Dr Hala Alsafadi gave a quick presentation on observing the religious festivals which managing diabetes.
Ramadan, which started yesterday (29th June 2014), is a period where followers fast between sunrise and sunset in the locality. Ramadan shifts throughout the 365 day calendar year and for those resident in the UK the new few years are going to prove tough as Ramadan spans the longest days of the year. Today where I live sunrise was 4:54am and sunset is 9:23pm, so that’s a period of 16.5 hours where observers cannot eat, that’s got to be pretty tough for anyone, let alone with Type 1 and Type 2.
Luckily people with Type 1 Diabetes are exempt from this, however many choose to observe the fast.
Diabetes UK have produced some advice about Ramadan: Managing Diabetes During Ramadan

The Tai Chi Escape Plan

After a healthy lunch it was time for the Tai Chi session but neither me,Steve,Kelly,Tanwen or Laura fancied doing it so we slid out and headed to the nearby McDonalds for a drink and a chat. It’s such a nice little group we’ve got locally, just a shame Meghan couldn’t make it too.

Tabs and Jabs

Dr Mayank Patel started the last presentation talking about the many different types of medications available and mentioning some which he hoped people weren’t taking, luckily no-one raised their hands.
Advanced Specialist Pharmacist Philip Newland-Jones finished the presentation talking about prescriptions, medication and pharmacists. It was the first time I’d heard Philip talk and I thought he did really well, getting his points across, having empathy with the audience and especially some disgruntled ones.

Ask the Experts

This was a open question session for the audience to ask whatever they liked. Questions ranged across many subjects and each was answered by one of panel members (Dr Patrick Sharp, Jan Mitchell and Sarah Woodman).

Type Onesie fundraising for DRWF

Raising awareness locally

Last weekend a few Twitter friends and some of their families went to Havant shopping centre to raise awareness and money for DRWF, an international diabetes charity whose UK base is quite close to me. DRWF are unique in that they are a global charity helping people with all types of diabetes.

I’ve meet a few of the DRWF team before: Sarah (the CEO) at the Portsmouth Sweetmeet in May; Claire who does the social media at the DRWF Wellness Day South day in June. There’s something quite special about DRWF, after all which other Diabetes charity Chief Executive would recognise you instantly and come over and have a chat?

When my friend Laura (aka @Ninjabetic1) came up with the idea of raising some money in Diabetes Awareness Month it didn’t take her long to figure that trying to help DRWF was the right option. And so started the conversations which led to many of us local Twitter friends meeting for the first time.

Jane, Amy and Emilia were there; Steve, Suzie and their daughter were there; Laura was there; Helen and her daughter (who has Type 1) were there; Tanwen was there, along with Sarah and Claire and her husband from DRWF. I know what you’re thinking: where we you Kev, in your onesie? Sadly – well luckily really – I was going to see Chase & Status at the O2 in London, so sadly/luckily I couldn’t buy/don a onesie and wear it out in public. Shame eh?

Claire’s husband took a video at the event, it’s pretty good, watch it and get to hear how Type 1 Diabetes has affected my family and friends and what a cure would mean to them.

Whirled diabetes days: a new blog, one year on

On World Diabetes Day 2012 our new blog, Circles of Blue, went live.

What a year it has been.

A good year.
A year of dealing with diabetes proactively.
A year of diabetes advocacy.

 
whirl (hwûrl, wûrl)
verb. whirled, whirl·ing, whirls
    1. To revolve rapidly about a center or an axis.

 

“there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1”

The blog was officially released on World Diabetes Day 2012 although I let everyone have a preview of it a few hours before that day dawned. Since then we’ve written 70 posts over many subjects and there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1. It’s fair to say I’ve been blown away to how it’s all been received, not just by the #DOC (Diabetes Online Community) but by the thousands of individuals who’ve happened to find an article of use to them thanks to Mr Google. It pleases me to see that people have reached my blog after search for things like ‘can a diabetic travel to India?’ (answer:yes) and ‘can a person with diabetes get a fast pass at Alton Towers?’ (answer:yes).

It’s been a year of reflecting

Well, actually it hasn’t been a whole year, most of the reflecting was done in November and December when Amy, Jane and I wrote our diagnosis stories – full series of articles is here. Occasionally I try to re-read them but I rarely get to finish them.
One of the most read areas of the blog is the series about travelling to India with Type 1 Diabetes with the top page of choice being Cooling Insulin with Frio Wallets. I really enjoyed re-working my original blog about that trip – Monsoon Meandering – reflecting on the epic trip it was and making it useful for any people with diabetes who are thinking about travelling there.

It’s been a year of learning

This time last year we knew very little about diabetes, we just coped with it on a day-to-day basis.
Amy had just got an Aviva Expert meter which made life so much easier that I started asking the #DOC about insulin pumps. It took a while to get Amy interested, and further time for her to not faint whenever they were mentioned, but in March 2013 Amy decided she wanted a pump and on the morning of the 20th June she took her last scheduled injection and starting pumping a few hours later – it’s changed her life in so many ways.
Now, we’re looking into CGM (Continuous Glucose Monitoring) and hope that early next year Amy will starting using that.
All of this learning wouldn’t have been so easy to obtain without my friends from the #DOC, so once again I thank you all for that.

It’s been a year of attending events and meeting people

“Since April I’ve met with around 40 – forty! – people I know from the #DOC”

Starting in April we met our first two people from the Diabetes Online Community (#DOC) – Laura and Anna, who gave Amy a demo of their pumps.
A few days later We went to our first official event the JDRF Discovery Day in Bristol; the Portsmouth “SweetMeet”; the JDRF Discovery Day in Dorset; the DRWF Wellness Day; the Greater Minds Inspire event; the Diabetes UK Big Event; the Bristol JDRF Walk to Cure.
In May we took part in Gavin Griffiths’ GBR30/30 Challenge, with Amy cycling 30 miles in one day and ending it with a run up a big hill carrying Gav’s Olympic Torch.
At the end of June we had a great two days in Alton Towers with Derek, Clare and Chloe, meeting other #DOC people Philippa and Vanessa.
Since April I’ve met with around 40 – forty! – people I know from the #DOC and more importantly Amy has met some other kids with Type 1 Diabetes; they’re sure to be friends for some time.

It’s been a year of stepping up our game

Amy became as JDRF T1 Ambassador and wrote a two page article entitled – Adventures with Type 1 – for their T1 Kids magazine, appearing on the front page
I’m halfway through becoming a Peer Supporter for Diabetes UK, where I’ll man a phone line for a few hours a week, helping people with any type of diabetes. I’m excited but also nervous about this opportunity as I know I might not have the answers they need but hopefully I can help them.
Earlier this year I was asked by a neighbouring area’s diabetes special nurse to introduce parents of newly diagnosed children to the benefits of using Social Media for diabetes. I ended up creating a leaflet entitled ‘How social media helps us with Type 1 Diabetes’ which has been well received by many, be they health care professionals, newly diagnosed people/parents as well as the diabetes community at large. I’ve been so grateful to the endless retweets, posts and linking done by others in getting this leaflet out there and feel sure it’s got to many of the right people.

The icing on the cake has just arrived

Whilst writing this article a new tweet flashed up on my screen. I was amazed at its content and I couldn’t be prouder than to have a leading, respected Doctor mention this blog.

DRWF Wellness Day South – 22nd June 2013

Going, then not going, then going again

I had originally planned to go to this event, but then something else turned up, I got sidetracked and never put it in my diary.
If I’m honest the photos of the previous year’s event didn’t inspire me that this event would have much relevance for Type 1 diabetes. I’d like to state now that I couldn’t have been more wrong, and some parts probably had a lot more relevance to Type 1 than the majority of the audience who (I’m guessing) had Type 2.

Helping another person with diabetes

For all the diabetes events I go to I do it for someone else, my daughter Amy who has Type 1 Diabetes. This time however I was going for someone different, my dad Roy who has had Type 2 Diabetes for many years.
My Dad seemed to know very little about his condition but to be honest he didn’t need to as my lovely step-mum Liz managed his diabetes, making sure he ate the right things and took his tablet medication. My Dad didn’t really even know what his last hbA1c was – which shocked me – and it as at that point I start talking to him regularly about diabetes. I should have done this some time ago.
So a few weeks ago I convinced my Dad and Liz to go to this DRWF event and freed up my diary to go with them, something my Dad wanted.

On my way

Just before leaving I tweeted (like I do 🙂 )

drwf tweet

I love it when social media officers in charities/companies/etc embrace a sense of humour.

Welcome to the family

Arriving at the event earlier than my Dad, I bumped into Helen (who I’d met at the last JDRF event) and had a chat before being tapped on the shoulder and turning around to meet DRWF’s Claire who’d been tweeting with me earlier; I’d not met Clare before but we had a good chat as if we were old friends, that’s what happens at diabetes events, one big family.
Later I caught sight of DRWF’s CEO Sarah Bone who said “Ah, Mr Oceantragic” or something like that. It’s really nice to be recognised at these events, especially by those who must meet so many people in their role.
It feels like being a part of a big family, meeting your distant cousins at some celebration.

The day starts

After a few words from Sarah, then Lee (the event organiser) spoke for a while before the first speaker came on.

The Diabetes Checklist, Dr Mayank Patel

Dr Mayank Patel is a Diabetes Consultant Physician at the General Hospital in Southampton. I didn’t recognise the name but I should have, I follow him on Twitter, but in my defence he doesn’t tweet much.
He spoke about the checklist of diabetes care that everyone should be getting, expecting, demanding. He asked who had heard of the 15 item checklist and I raised my hand, along with very few others; I was quite surprised.
I found myself nodding with many things Dr Patel said and enjoying every minute of his talk.
I could see that my Dad had learned a fair bit in this talk and I was pleased.

Diabetes behind the wheel, Dr Patrick Sharp

Dr Patrick Sharp is a Diabetes Consultant Physician for the Solent NHS Trust. (I’d better check whether I’m following him on Twitter 🙂 ).
He went through the current state of play with driving in you’ve been diagnosed with diabetes; stating the current law and importantly why it’s changed recently.
I liked the way he spoke about the sense/logic behind the DVLA’s current rules and medically the reason for the rules.
Importantly he explained the ‘assisted hypos’ which seems to cause confusion no end, explaining that an assisted hypo is not when you ask your spouse/parent/partner to get you your Dextro tablets, it’s when you need help from a healthcare professional or similar.

Meet The Experts

The hour long coffee break was also the Meet The Experts time where we could go around the stalls. I headed straight to INPUT Diabetes, met Lesley and had a good chat.
I went round all the stands by myself, bumping occasionally into my Dad and pleased to see him getting so involved and interested.
I wanted to also see the Menarini Diagnostics stand and chat with them about their Glucomen meter, which we’ve got two off. I’d called their support desk last week to discuss a potential faulty meter and they were great, so I wanted to pass on my thanks. I found the stand but it looked odd, only showing their GlucoRx meter. Turned out it was a different company (GlucoRx – I only found out after saying ‘are you Glucomen?’. Oops. I was quite impressed with the design of their GlucoRx Nexus Mini and the practicality of the brand new GlucoRx Nexus Voice speaking glucose meter.
Apart from INPUT one of the better chats I had was with a dietician talking but it didn’t start well. I saw the stand and spotted their Eatwell plate, then I saw a slightly different version, it was the Eatwell plate for the Asian community so I picked up a leaflet. The dietician looked at me strangely and offered me the normal leaflet which I declined.
“No thanks the Asian one will do me fine”
“We have it in Bengali too”
(Alright love, I’ll do the jokes around here thanks)
I then kept her busy with questions and questions about low-carbing, low-GI, deducting fibre grammes whilst carb counting and my favourite carb-counting topic of when to count, or not, a portion of 5g veg. (Don’t get me started, I’ll be here all week!!)

Pilates with Priya

Priya Tew is a level 3 pilates instructor and honestly I had no interest in watching her demo. Not for me right, I’m a bloke, I play football, squash and go surfing (although all quite badly to be fair).
But watch it I did and how glad am I that I stated.
Priya gave a few demos although being at the back I could barely see, and she explained why pilates could be good for some of the people in the audience.
Then came the eye-opener for me: “Pilates is good for those with a frozen shoulder”.
Hold on, I’ve got one of them, I’ve had it 3 years!. Whilst it’s no longer painful my arm movement is quite restricted. I listened more eagerly to the rest of the demo.
Afterwards I spoke with Priya and discussed a way forward for me, how pilates could really help. I’ve got her details and I hope I do actually book a session with her soon.

Lunch and meeting the experts again

After a very enjoyable lunch it was time to meet the experts again and I had a nice chat with Dr Patel, speaking about hbA1c checks and things like that. I’d briefly chatted with him earlier, finding out he trained with Dr Partha Kar and what a great Dr/guy he is. I tweeted Dr Kar who’d replied and said Dr Patel was in fact the legend. I found it so nice to see the mutual respect they had for each other.

Pick your stream

After lunch there were 3 streams to choose from: Increase Your Wellbeing; Looking After Your Eyes; Speed Dating for Type 1s.
I sent my Dad into the wellbeing stream whilst I attended the Type 1 stream, along with Helen from earlier and her friend.
In my stream were two Diabetes Specialist Nurses from Southampton. We had a good chat, especially about their lack of pump service and what they’re trying to do to get one.

Q&A

The afternoon ended with a question and answer session with three people; Dr Mayank Patel; Jan Mitchell and Sarah Woodman.
I’d passed Sarah in the corridor and she smiled at me, I thought I knew her from somewhere but didn’t know where until I saw her on the stage. I’d met her a couple of weeks back at a DiabetesUK stand in a nearby supermarket. She’d promised to email me something, I never received it, I wondered if this could be a question I could put to her as part of the Q&A.
Okay, maybe not.

It’s all over

What a great day.
I’d learnt so much, networked so much and drank so much coffee. I’d met some wonderful people, many of which I’m sure to bump into again at future events.
More importantly my Dad had learned loads and picked up an Accu-chek Aviva meter which he intends to use to start monitoring his glucose levels, something he hasn’t done much in years. It was worth me going just to see this.

Thanks

I’d like to thank DRWF for putting this event on and the other great work they do.
Thanks.