Promoting Diabetes UK’s 100Things book, World Health Day, and a short TV appearance

Diabetes DadIn what seems like a millennium ago I submitted some travel tips to Diabetes UK for their upcoming book 100 things I wish I’d known about living with diabetes. I instantly forgot about it until they contacted me to say out of the 1100 total entries one of mine had been picked.

Tip43When you’re travelling or going on holiday, double up on the amount of suppplies you need, split them across two bags and ALWAYS keep a hand on them. (Both of our daysacks fell out the back of a Tuk-Tuk in India just before a 15-hour train ride!)”

I was pleased I got 43, it’s an old favourite Level 42 song of mine, although ’42’ would have been a better number of course.

When the book came out I was pleased to see not only my tip in print but those of friends like Helen and some from celebs like TV legend Phillip Schofield and Hairy Biker Si King. Sylvia from Diabetes UK got in touch and I asked if I’d be happy to promote it, a media article maybe. “Of course, no problem”. The press release didn’t gather much interest except from a local TV channel.
“Would you go on TV Kev?” asked Sylvia.
“Erm, no thanks”. [repeat 100 times]
“Are you sure?”
“Oh, okay then” I relented.
My plan was that as That’s Solent TV only broadcasts in the region so I knew relatively few people would see it, especially if I didn’t tell them when it would be on.

Filming and clip release was planned for World Health Day (7/4/16) which this year was Diabetes related. Shan, the journalist, filmed lots of clips, some of me, lots of Amy and lots of Jane, both of which are far more eloquent than me. We spoke about the travel tip, Amy’s diagnosis, a lot on the DIY tech of Nightscout and xDrip, and Amy gave a demo of her latest gadget the Freestyle Libre from Abbott.

So many clips were shot for the proposed 3 minute clip and I wondered how on earth Shan was going to be able to create something from them, but she said well by focusing on information about the book and Type 1 diagnosis and symptoms. Shan did say later that she hopes to do a second clip featuring all the DIY/medical technology we spoke about.
I was really happy with Shan’s accuracy of information given all the bad press journalists get – due to Daily Mail articles, etc., so well done Shan.

All in all, I’m happy with the overall result although I’m likely to start a new book on video tips* Here’s the video, which in true Winchcombe fashion overran its original time slot by double, it ended up 7 minutes 10 seconds long.

*Kev’s Tips for being on camera
1) Tape eyebrows down and stop yourself from looking like you’re Roger-Moore’s-Eyebrow-Stunt-Double.
2) Don’t ever say the word ‘taxi’ as if the reporter has never heard that word before.
3) Don’t just tidy up the bits of the house you know the filming will take place in. Especially don’t move all the junk in the areas you clean up and put them onto the table they definitely won’t film.

Diabetes UK Make a Difference Conference 2015

DiabetesUK_final_brandThe Make A Difference conferences are run by Diabetes UK for people who volunteer for them and there’s one for each region. On Saturday I attended my local area’s one in Guildford, it was my first one, it won’t be my last.

I was pleased to see Angie from Southampton D:UK Branch and Helen & Stewart from Seahawks there, along with Raymond from Fareham, all people I’d met over the course of the last year. I was there because of my involvement with the national Peer Support service #TalkToSomeone that I’ve been doing since October 2013. After a few chats with D:UK staff the conference started headed up by Jill Steaton, South East REgional Manager.

Morning workshop: Make The Grade
MakeTheGradeTweetThe audience split up to attend workshops we had all signed up for beforehand, with Stewart, Helen and myself attending the ‘Make The Grade’. As part of it the ‘Hands Up for Good Care in School’ video was shown and brought a smile to my face as I watch Lewis, Andy and Zoe on the screen.

The science bit
There were a couple of scientists there, whose work is funded by Diabetes UK. First up was Lisa HeatherX who spoke about her work looking into how the heart works differently for people with Type 2 Diabetes, although it seems it’s just as valid for Type 1’s as well. I’m always amazed at how well these scientists convey their work to people like me who understand precious little about it; she did it well. Of interest was how muscles in general can be powered by fat yet within seconds of a heart attack in a non-D person the heart switches to use carbs as a fuel source, something it doesn’t do in people with diabetes and something that she’ll be investigating further.
Next up was Chloe Rackham about her research into how MSCs (Mesenchymal Stromal Cells) can help make islet transplants more effective and efficient, a topic I struggled to keep up with. Out of interest she lives with Type 1 Diabetes herself. Islet transplants is a great idea and I’m sure once it’s combined with stem cell growth it will really take off.

An unexpected tweetup
In the Q&A after the first talk a lady from the audience asked a question about ketogenic diets in relation to the news that the heart favours being fuelled by fat, not carbs. Given that I’ve been eating predominantly a Low Carb High Fat diet for at least 6 months now my ears pricked up and I went over to say ‘Hi’ and have a chat. A few minutes into the chat Julie (@julie_unruly) realised we knew each other online (Twitter, Facebook) and had ‘spoken’ many times. It’s so nice to put a name to a face and the chat was a highlight of an already good day.

Afternoon workshop: Safeguarding
I decided that the Safeguarding workshop would suit my role for Diabetes UK, teaching me things to listening out for during the phone calls to help identify people who needed help. With twenty or so in the room we divided into teams and played a game I’ll call ‘is it okay if…’ – which made me smile as a fan of The Last Leg. It was good to see that most of us agreed on whether the topic highlighted a deeper issue or not and I was pleased to be educated by others on the one I thought was okay, but 50% of people did not.

seahawksAnd finally, The Awards
The Inspire Awards are Diabetes UK’s way of recognising some of the amazing volunteers it has and the amazing things they do for the diabetes community. Many people seem to spend all their days doing one thing or another for Diabetes UK or the diabetes community. Take one of the nominees, Angie Whitmarsh: she helps run the D:UK Southampton support branch, she attends many hospital and CCG meetings, she helps out with collections, she goes with D:UK to Parliament for things like the APPG (which took place a couple of days ago) and rushed back from that to attend the launch of a parents and families D:UK support group within Southampton. Yet, with all this and more Angie sadly did not win an Inspire Award; the bar for these awards is clearly very high.
I was really pleased when Seahawks, the South Hampshire families group, won an Inspire Award, as the support it gives to local families is fantastic, truly inspiring. The dedication given by Helen and Stewart (who collected the award) and other committee members knows no bounds and I’m glad that Diabetes UK recognised that.

Blogaversary 2 on World Diabetes Day 2014

Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.

Diabetes UK are Making the Grade

Hands up for Good Diabetes Care tweetI saw Diabetes UK’s ‘Hands Up for Good Diabetes Care in Schools’ a while ago, after seeing a tweet from a rather proud Andy, proud of the video 10 year old Lewis starred in.

If you’ve not seen it take a look by playing the video below.

A great campaign

Make the Grade is yet another great campaign from Diabetes UK and I’m really grateful for all that they and all the other diabetes charities do to make my daughter’s journey from school and life that little bit easier. Although she’s one of the lucky ones, backed by a school who are willing to make the adjustments necessary for people who need them.

Sticking up for our kids’ rights

Others of course are not so lucky, such as Andy & Zoe’s Lewis who was excluded from a residential trip because of his condition, with the school expecting Zoe and Andy to bring Lewis home every evening during the trip. The school was clearly discriminating which is why a tribunal found in favour of Zoe & Andy but isn’t it a shame any parent needs to ever battle with a school over their child’s care. I’d do exactly the same, in fact, I almost did.

Sticking up for my kid’s rights

It was way before I ever got to know Zoe or Andy – in fact we still haven’t met – that I printed out a cutting about their court case and headed off to my daughter’s school only a few weeks before she went on a school trip to Germany.
I gave the article to one of the school management team and said “please read this and tell me if we have a problem”.
“No Mr Winchcombe, everything will be fine.”.
And that’s how it should be, for every child and parent.
For those parents who aren’t so lucky that have the backing of Diabetes UK and their Make the Grade campaign”.

What can other parents do?

First, watch the video embedded above if you haven’t already.
Visit the Make the Grade section of Diabetes UK’s web site.
Order up the parents pack and maybe order up a school pack too.
Be aware of what schools should be doing.
Make sure your school is giving your child good care and if they’re not approach them, talk to them, educate them (ah the irony).

Type 1 diabetes and young people – Rt Hon George Howarth, MP

Parliament_at_Sunset

I’ve just finished listening to (a lot of) Rt Hon George Howarth MP’s parliamentary session entitled Type 1 Diabetes and Young People. It was a breath of fresh air to listen in the public eye who ‘got it’, who explained everything correctly, who wanted more support for people with Type 1 Diabetes.

Here’s a link to a stream of the debate: Type 1 Diabetes and Young People.

Mr Howarth’s own knowledge of Type 1 Diabetes is for me a sad and alarming story. As a parent of teenager with Type 1 Diabetes I worry enormously about stories like that of his daughter. Clearly if I ever meet Mr Howarth we’ll get along quite well.

So it was a first for me, listening to some ‘boring’ (perceived, not actually what I felt whilst listening) speech and actually understanding it, agreeing with it and at the end wanting to applaud Mr Howarth for holding this session. It was great to hear him praise Zoe Scott’s Hedgie Pricks Diabetes and Diabetes with Eating Disorders amongst other organisations and charities. Diabetes UK’s and JDRF’s programmes and initiatives were covered well.

What amazed me the most was the knowledge of, and some of the issues raised by, other MPs who (I guess) have little exposure or knowledge of Type 1 Diabetes. One MP raised that education needs to be given to those with Type 1 to help them avoid diabetoketoacidosis (DKA) due to Diabulimia. Another MP raised the issue about schools not supporting children with Type 1 and those that cannot inject their own insulin.

Between them they covered many things, such as the benefit for some in using insulin pumps; the Artificial Pancreas project funded by JDRF; about transition from paediatrics to adult care based on clinicial need rather than age; support and training for psychological issues; about the DWP and issues with awards of Disability Living Allowance.

This was all great to hear, that those with influence know a lot of what they are talking about and are behind many initiatives to bring Type 1 Diabetes more support than it currently gets.

Personally I’d like to thank everyone involved for taking part and especially Rt Hon George Howarth for this debate.

Diabetes Education Day with Seahawks

seahawks logo
A while after Amy was diagnosed I started looking for support to meet up with other families in the same position as us, that’s when I first heard of Seahawks, the South-East Hampshire Families Group. It didn’t really occur to me to join in with something based in Portsmouth, that seemed a long way down the road – it’s 30 minutes! – as surely there would be something more local, there wasn’t.

So whizz forward to one month ago where we all attended a free cookie decorating session run by Seahawks. On walking through the door we immediately became part of a wider extended family, with many of the committee coming to introduce themselves and have a long chat. We all had a great time there, even if Sam did press-gang me into drying up for seemingly hours…I’m joking of course Sam. Amy immediately hit it off with a newly diagnosed girl, N, and we spoke with N’s parents for ages.

Fast-forward again to last Saturday and we attended their education day at the QA Hospital in Portsmouth. I didn’t really expect the event to be as big as it was but there must have been 200 people there. I already knew that the hospital backed Seahawks and everyone who attended the clinic there had been invited and it dawned on me Seahawks is one of a kind, certainly in this area.

With a room full of the key diabetes charities/companies like Bayer, Roche, Medtronic, JDRF and DiabetesUK ready to demo their wares, I spied Helen the rep from Roche/Accu-chek and I went over to get my first look at Roche’s new Aviva Insight insulin pump.

On a table full of leaflets I placed a good few copies of my ‘How social media helps us with Type 1 Diabetes’ leaflet, hoping it might help any parents currently feeling alone.

With Amy being entertained in the kids’ area the day began with an overview of type 1 diabetes by Dr Nalin Wickramasuriya. He spoke in length about the research currently being done all over the world and which one he thought might give the breakthrough. As ever this sort of info was fascinating, if not a little over the head of someone who never did Biology or Chemistry at school.

Next up came two sessions each with four options and which ones we attended:
  Session A
    1 Secondary carers – what you need to know
    2 Ups & Downs of Carb Counting– why there are glitches Kev & Amy
    3 Thoughts & Feelings
    4 Exercise Management/Having Fun Jane
  Session B
    1 Sick day Management DSN Parents
    2 Carbs – getting to grips with guestimates
    3 Thoughts & Feelings Jane
    4 Teenage Years Kev & Amy

All sessions we attended were great and gave us some ideas and knowledge for the future. I never knew for example that the more cooked a jacket potato was the quicker it would release the carbs inside it, especially if microwaved rather than baked. Over ripe bananas release glucose faster too, not that Amy would ever eat one of those.

Networking as these events is always good and it was a delight to see Sue from JDRF South and Daisy from Diabetes UK again. Bumping into N’s Dad again we arranged to meet again soon. At lunch sitting behind a family we overheard a conversation about pumps by a girl who’d never really seen one, so out whips Amy’s pumps followed by her take on wearing and using a pump 24/7, few minutes later the girl had decided she wanted one.

Sadly after lunch we had to fly (literally, blog coming soon) as Amy was doing indoor skydiving for JDRF in the afternoon, so we didn’t get to attend the rest of the day. But what a great event it was and I’d personally like to thank anyone who helped organise the event, you did brilliantly.

I’ve got a feeling we’ll be attending more Seahawks events in the future.

The wait is (almost) over – CGM, Animas, Dexcom and Kids

pink-vibe-snigger
Earlier this week I blogged about waiting for Animas to get their licence to sell Dexcom G4 for use by kids and how the Diabetes Online Document (#DOC) rumour mill was suggesting an announcement would happen soon.

That announcement was rumoured to be tomorrow at a symposium held by Animas at the Diabetes UK Professional conference in Liverpool.

But it happened today. On Animas’s stall in the exhibition area sat an Animas toy kangaroo wearing a badge which said:

Animas Vibe & CGM system
NOW APPROVED
for children aged 2
years & older

One of my Twitter friends let me know the exciting and now official news:

Making the call to Animas

At lunch time I contacted Animas (0800 055 6606) to try and register for, or buy if possible, the newly approved CGM.
“Hello, I’d like to buy CGM for my daughter who uses an Animas Vibe, now that you’re officially licensed to sell them.” The lady on the other end of the phone was surprised I knew about it but was happy to talk with me.
I was informed the launch date is sometime in April, not April 1st, or the end of April, just at sometime.
I gave my details to be kept on file for them to inform me when they had any news.

And the price?

Animas has had a starter kit deal for some time, certainly from June last year. For £450 that deal gets you a transmitter and a box of 4 sensors.
So I asked if that deal would be still on come April; the conversation went something like this:
Me: “And will the £450 starter deal still be on?”
Animas: “I’m not sure, currently that deal ends on March 31st”.
Me: “Oh great. Well, I’m happy to pay now and just wait until you can send the bits to me.”
Animas: “I’m sorry, we’re not in a position to do that.”
Me: “Oh great.”

Promoting Diabetes UK’s #TalkToSomeone Peer Support Service

Recently I’ve become a Peer Support volunteer for Diabetes UK, answering a national phone line (0843 353 8600) for one evening a week as well as answering emails sent to my TalkToKev@diabetes.org.uk email address.

I joined at a time when a promotion campaign was set to start and I was asked to share my story and experience. So I put some thoughts on an email to Sylvia, Diabetes UK’s South East Regional Media Officer, who produced a media release – shown in full at the bottom of this post.

Yesterday the article appeared in my local newspaper, Southampton’s Daily Echo and has already generated a fair bit of interest judging on the number of hits this blog got yesterday.

It’s also been picked up by a couple of other places: Portsmouth Evening News, The Littlehampton Gazette, the West Sussex County Times and The Community Channel

Diabetes UK’s Media Release

For immediate release

Hampshire man lends a shoulder to support peers living with diabetes

A 44-year-old Eastleigh man is offering support to people living with diabetes, with the help of charity Diabetes UK.

Kevin Winchcombe does not have diabetes himself but has been sharing his first-hand experience of caring for a child with the condition through online blogs, twitter and Facebook as a way of letting people with diabetes know that there may be others going through similar situations.

He is now being supported by Diabetes UK to use his personal understanding of the condition in their ‘Talk to Someone with Diabetes’’ peer support project. It is a special phone line, staffed by Diabetes UK volunteers, which anyone with diabetes is welcome to call.

It is also available for relatives and carers of people with diabetes. The volunteers do not offer medical advice but crucially they can talk about the practical and emotional aspects of living with diabetes because they also live with or care for someone with the condition.

Kevin’s daughter Amy, 14, was diagnosed four years ago with Type 1 diabetes, a condition that means people cannot produce insulin. No one knows exactly what causes it, but it’s not to do with being overweight and it isn’t currently preventable.
It usually affects children or young adults, starting suddenly and getting worse quickly.

The charity has trained Kevin to use his diabetes knowledge to reach out to people who are looking for support networks. So now in conjunction with his own experience, he feels confident to give practical and emotional support to people living with the condition on the telephone and by email.

Kevin said: “I get queries on a variety of subjects from questions on carbohydrate counting to advice on coping with the impact of diagnosis. But often it’s just that people want to talk to someone who can understand what they are going through and can offer ways to help or view their diabetes related concerns from a personal perspective.”

“My involvement in the Peer Support scheme is extremely rewarding as the volunteering role gives me the opportunity to help people who actually have diabetes and advise others, like me, who have someone close to them with the condition. I hope my contribution can, in some way, help people manage their diabetes more effectively by providing, advice and support for a condition for which there is currently no known cure.”

Jill Steaton, Diabetes UK South East regional manager said: “Kevin is a fantastic advocate for a parent looking after a child who has diabetes. As it’s a serious lifelong condition, it can be difficult, but through this project Diabetes UK offers the chance to talk to someone who has been there, who knows first-hand what it’s like to live with diabetes. Feeling like no-one understands what you’re going through can be tough but sharing experiences with someone who knows is often half the battle to managing the condition.”

To contact Kevin directly visit the blog at http://circles-of-blue.winchcombe.org; email talktoKev@diabetes.org.uk; or on Twitter @oceantragic.

To view profiles of all of the volunteers and start a conversation by email at any time, go to www.diabetes.org.uk/peer-support. Or if you prefer to speak to someone directly you can call 0843 353 8600. The service is open Sunday to Friday, 6pm to 9pm.

World Diabetes Day 2013

London Eye and County Hall 2

Quite a lot has changed since last year’s World Diabetes Day and the release of this blog but one thing hasn’t changed: my desire to take photos of buildings lit up blue to raise awareness of Diabetes.

Luckily fate had it that my boss wanted me to attend a seminar in London and it happened to fall on World Diabetes Day, today. With the seminar finishing at 2:30pm I had the rest of the day to myself.

I had a form I needed to drop off to Diabetes UK headquarters so off I headed to Camden and met with Lucy who’s heading up the Peer Support group I’m joining soon. I wanted to meet with Amy who heads up the social media for D:UK but she was busy helping with a Google Research Hangout with Dr Yuk-Fun Liu, something I’d sent some questions in for yesterday. Afterwards Lucy took me up to meet Amy who gave me the biggest hug of anyone in the #DOC so far.

As Amy takes photos for Diabetes UK we both headed out with out cameras to capture any buildings that had turned blue for World Diabetes Day. I’m not sure Amy really had a list as she kept trying to figure out if this or that building was one. “That’s a blue circle on the church next to Westminster Abbey”. “Amy, I think that’s been there a few hundred years”. “Oh, Pizza Express is blue”. “No Amy, that’s always blue”. Anyway, here’s what we found:

The fountains in Trafalgar Square
Trafalgar Square fountain

County Hall and the Aquarium
Aquarium & County Hall

County Hall
County Hall

The London Eye with the Houses of Parliament in the background
WDD13 London Eye close up

London Eye and County Hall from Westminster Bridge (short exposure)
London Eye and County Hall 1

And my favourite:
London Eye and County Hall from Westminster Bridge (long exposure)
London Eye and County Hall 2

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.

Diabetes has improved our life. What? Really?

A couple of weeks ago I attended a training course with Diabetes UK in London, as I’m soon to become one of their Peer Support team. I’m not going to write about the training itself as for confidentiality reasons that’s between those of us on the course but there’s one part of it we did which made me (and a few others) think about life since diagnosis.

Your journey since diagnosis

Just before lunchtime arrived we were asked to search our soul to find out how we really feel about our lives with diabetes and whether it would raise any further questions, or highlight anything we needed to explore further. This seemed to be a good thing to do as unless we know and understand our own journey how can we help any of the newly diagnosed cope with the early days of their journey.

Urrgghh! Drawing!

Drawing lines on a piece of paper doesn’t come naturally to me but I felt comfortable with our diabetes journey and drew my picture of troughs (and troughs) and peaks (and peaks and peaks).
I started on the left of the page in the middle but soon wish I hadn’t as I ran out of room.
I’d finished way before everyone else and my mind wandered back to a Technical Drawing lesson at school when I proudly approached the teacher asking what to do next, the teacher took one look at my drawing and suggested that I’d finished before everyone else as I’d neglected to do it properly.
I checked my chart. No, we’re good, I’m happy with that.

Diabetes improves our life. What? Really?

Here’s my chart – which may not be drawn to scale whatsoever.

Hover over the yellow buttons to see what happened at that point in time.

29th Dec 2010
1
2
3
4
5
6
7
8
9
10
11
12

diabetes journey chart

At diagnosis, our mood dropped, trying to come to grips with coping with type 1. Thoughts of cancelling the trip to India also got us down.

Lunchtime chat: could this journey really be accurate?

Another peer supporter, Nick Guerin (who won this year’s Quality in Care Diabetes Peoples’ Award) and I were chatting at lunchtime and talked about our own charts, which amazingly weren’t dissimilar, strange considering our journeys have been quite different. Nick’s blogged about it in his own blog Type Aware.
We both quizzed our own charts’ finishing positions: could it really be right that we both thought we’re in a better place now than before diagnosis. It seems crazy but actually I do believe it’s right.
I believe having diabetes has made Amy more determined to do well, to beat her peers in activities, to be thankful for what she has and can do. I feel I’m doing more things for others than I ever did before diagnosis too.
Having said this I’d be much happier right now if diabetes would bugger off.

Go on, have a go yourself

Why not draw your own journey since diagnosis and see how you get on. You may be surprised how you actually view your journey and it may raise some questions for you to explore.
Everyone’s different and there’s no right answer, this is just for fun.

Gatecrashing a CCG Patient Focus Group

CCG

It all started by chance

On Tuesday 17th September at the end of my first ever Diabetes UK Winchester Support Group meeting I was chatting with Lucy & Daisy from Diabetes UK and a lady came to sit down next to me to chat – I wondered what I’d said wrong 🙂 That lady was Beverley Meeson and turns out she’s the Associate Director in Long Term Conditions at West Hampshire CCG. A prominent figure in an organisation we already owe a lot to and here she was asking little old me for information. We spoke about Amy’s new pump and she asked it was one of the new ones with integrated CGM (Continuous Glucose Monitoring). “Yes” I laughed “but it’s irrelevant as the CCG won’t pay for them.” I couldn’t help myself. Oops.

Seizing opportunities

True to my word I emailed Beverley the very next day with details of our journey to getting a pump and pointed her towards my many articles on the subject.
Beverley forwarded my details to Janet Hutchings who was organising a patient focus group for Type 1 Diabetes adult care, who emailed to see if I could come along to a meeting, which was happening the following Monday.
It was going to be a struggle to take the afternoon off at such short notice, was it really worth it and could I really be bothered?
A tweet out brought replies which convinced me to go
tweet1tweet_reply_pollytweet_reply_parthatweet_reply_sarah
That was it then, I was going, if my boss would agree.

The agenda

Janet had said that she wanted an informal meeting so that it would facilitate more open discussion but at the same time wanted to discuss certain topics, so set a rough agenda:
Welcome and introductions; How did you hear about this meeting?; Your current experiences of the service (positives/negatives); What would enable you to manage your diabetes better?; What would a quality service be for you?; How could we use innovation and technology to improve services?
Woah, did you see that last one? I’d best save my voice for that bit!

Introductions by everyone there

It was quite a small affair but I think it was better this way as it gave us all a chance to speak. If there’d been too many no one would have had a chance.
The meeting was chaired by Janet of the CCG.
Patient number one was Dave, who said he was confused whether he was Type 1 or Type 2 as people tell him different things. I took this to mean that he was an insulin-dependant Type 2 as Dave seems to only see his local GP and nurses. Or perhaps he’d been missed off the lists at the hospital?
Patient number two was Andrea, who has had Type 1 for 40 (I think) years and attends a mixture of two local hospitals, one of which is our one.
Patient number three was Martin, who was diagnosed in the 80s whilst in his late 20s. He attends a different hospital and some of the same places as Dave.
“Patient” number four was me, an interloper who’s got nothing to do with adult care for people with Type 1 Diabetes.

How did you hear about this meeting?

Janet had a big list of people she’d contacted to get the message out there about the meeting.
Not one of us had heard about it from the official channels and had generally found out by chance or coincidence, something Janet felt she needed to work on next time.

Your current experiences of the service (positives/negatives)

Once everyone had gone through their list of of positives and negatives of the current system one thing became clear: all our experiences are completely different and could be labelled as the usual ‘postcode lottery’. Given that we all fall under the same CCG this seems strange and hopefully something that can resolved with some guidance.
One person spoke about how they are forced to go and have an HbA1c done at their GP’s, one month after being done at the hospital. If they don’t go they don’t get their prescription filled and therefore don’t get any insulin or test strips. I suggested to the CCG that this was a pointless time-wasting inefficient box-ticking exercise, given that a GP is not likely to suggest altering ratios or start discussing Super Bolus-ing or any some such.
Interestingly for me, I didn’t think I’d have too much to say here but it seems paediatric experiences are similar to those for adults.

What would enable you to manage your diabetes better?

Test strips and knowledgeable GPs seemed to be the consensus.
With test strips the postcode-lottery rears its head again, or more to the point it’s the subjectiveness of the GP that drives the issue. Andrea pointed out the history of test strips being refused, something that Janet paid close attention to. Part of the problem seems GP’s confusion between the two main types of diabetes. Again clear guidance and education from the CCG to the GPs should save the day.
The other three key points were education, education and education but with it a big caveat: we all agreed that courses organised and run by the hospitals were needed and we spoke about the DAFNE style courses and how beneficial they’ve been to those who attend. The caveat (raised by us patients) was that patients should not sit back and expect to be told everything, that patients should be encouraged to be proactive in their condition. We felt that the hospitals could signpost new patients to other resources, something they don’t seem to readily do at the moment.
I spoke about instant HbA1c tests and how some people had to organise a blood test weeks before their appointment. Martin didn’t understand what I meant as he didn’t even know this was possible as it seems it’s only done like this in paediatrics. But why? There’s a machine sitting there in the hospital in Winchester, why not use it!? I suggested that this would make like easier for people and at not a huge cost. Janet wrote this down to investigate further.

What would a quality service be for you?

We spoke about the 15 Healthcare Essentials; about care in hospitals; about GP’s understanding of the different types of diabetes; about access to DSNs.
I – who came prepared 🙂 – spoke about Portsmouth CCG’s Super Six model and ask whether the CCG had looked into it – they had and will investigate further.
Andrea and I spoke about the patient focus innovation that was the Portsmouth “Sweetmeet”, something both Andrea and I attended.
(I started to wonder whether I should not mention Dr Kar’s name again in case it started to wind up the CCG 🙂 )
I spoke about transition from paediatrics to adult care and may have inadvertently mention Dr Kar’s name again, along with his article Changing services can actually be fun.

How could we use innovation and technology to improve services?

Janet asked about technology improvements and how they could help patients.
I cleared my throat.
This was my time to talk.
With reference back to our discussion earlier about patients taking partial responsibility for their own education I started talking about my recently created and released leaflet ‘How social media helps us with Type 1 Diabetes‘. Luckily I’d printed a few out which I handed out for people to read.
I spoke about virtual clinics for people who have trouble getting to the hospital, access to hospital information, standards of care, social media groups run by the hospitals and so on.
I may have gone over my allotted time 🙂 Oops!
On top of this I spoke about my use of Diasend, how the hospitals can access the information and how this could help patients.

And finally

I’m so glad I attended this meeting and would like to thank both Janet and Beverley for allowing me, a mere interloper, to attend.
I think it’s great the CCG are encouraging patient focus and collaboration and look forward to working with them in the future.
Thanks.

Diabetes UK’s Big Event 2013

The Big Event

The Big Event lived up to its name with people coming from all over the UK to listen to topics about diabetes for all types (1, 2, etc.) in a single location.
It’s an awareness day very similar to the JDRF awareness days (1 and 2), the DRWF Wellness Day and Hedgie Pricks Diabetes awareness day I’ve been to recently.
I’m not sure of the exact count but I’d guess there were 500 or 600 people there so it’s a pretty large gathering.
One key element of the day for me was to meet some of the wonderful people that I “talk” to through Social Media on a daily basis and for me it was a highlight of my day.

First, the location

The event was in Hammersmith, London, certainly not too far from me therefore easy to get to. Last year’s event was in Warwick so it’s good to Diabetes UK moving the event around each year to enable access for others.
Some people though are happy to travel long distances for events like this and I met people who’d come from Nottingham, Derby, Wales and Northern Ireland. Fair play to them.

Registration and first meets

Registration was so simple and within seconds we were into the main hall where I immediately spotted a twitter colleague Dave, or was it Dave? People rarely look like their online presence do they! We’d all joked the other day on Twitter that Dave should bring his Yorkie down to give to whoever spotted him first. I tapped him on the shoulder with a “do you have my Yorkie?”. And so started my series of meetups.
Ten minutes later another tweep Rachel came to say hi proving once again that my ‘tweet a picture of today’s t-shirt’ worked. I proudly waved my Yorkie as Rachel was in on the joke too.
Then we bumped into friends from our clinic, Steve and Becky, who we’d arranged to meet there. This was already turning out to be a great day, I almost forgot we had talks to attend.

Talks, talks and more talks

Diabetes UK had gathered many talented speakers to discuss various different topics, all organised into tracks, one for Type 1, one for Type 2, one for parents of Type 1 kids and a generic one. You could pick and choose which ones to attend, there was no booking list, just turn up to the right room at the right time. We naturally migrated to the parents/schools sessions.

Session 1: What care to expect for your child

Steve, Becky, Jane and I took our places before I spotted Joe, Diabetes UK’s social media person at the event. We’d spoken online before so I went over for a quick chat. Yet another face to a name ticked off.
The talk was given by Libby Dowling, Clinical Advisor for Diabetes UK. She told us about the different policies and tariffs and just what care we should be expecting. The four of us are all at the same clinic and generally we’re pleased with the care we receive but listening others talk about their lack of care we felt quite privileged.
Two blonde haired women spoke about their recently diagnosed son, I knew one must be Karen, but which one? Finally I sussed which and tweeted her “I’m on your right, two rows back.” Next person to meet identified 🙂
The discussions around the room got quite heated as the lack of care provoked emotions.Session 1 tweet

Coffee time, some more people to meet

Back in the hall for more coffee and I spotted Simon – who has blogged about The Big Event too – and Teresa and went over for a chat and before I knew it session two was just about to start. It was hard to think we’d not actually met before as it seemed like a meeting between old friends. They introduced me briefly to Laura and Angie, two more from the #DOC.

Session 2: Pumps and continuous monitoring: basic introduction

Although Amy has been on a pump for a few months we still felt it was worth attending this session and went along with Steve & Becky whose child is getting a pump quite soon.
The talk was hosted by Melissa from INPUTdiabetes and Claire, a Diabetes Specialist Nurse and also co-founder of TeamBloodGlucose, an organisation I’ve been following for a while. Both have Type 1 Diabetes and are strong advocates for insulin pumps.
Questions were asked of the audience: who had a pump?; who had CGM?; who loved their pump?; who didn’t? It didn’t really surprise me that people loved their pumps (however on re-reading my tweet I’m surprised I didn’t spell ‘surprise’ correctly!).
Everyone loves their pump
It was great to hear Claire and Melissa speak, they were a great double act and everyone wanted Claire’s diabetes awareness dog who stayed near her the whole time. Claire spoke about CGM sensors and forced Melissa to parade uneasily around the audience.
Whilst talking about advantages and disadvantages I felt they omitted many of the advantages and bigged up some disadvantages, but I understood that they were probably not wanting to come across as saying pumping is the best solution – there’s a lot of people on daily injections who would get annoyed by that.
With the fab presentation over it was question time and some good questions were asked. Someone then started going on about her bad pump experiences and had a go for them bigging up insulin pumps. What a load of rubbish, the pump advantages had clearly been downplayed. I’m sad she had such bad experiences but that doesn’t happen to everyone and I’m sadder that her rant may put people off. Unfortunately it didn’t sound like she was going to stop going on so pretty much the whole audience left.

Amy’s Infusion Set Masterclass

After we’d eaten lunch Karen and her son introduced me to Shaun from Twitter who’d driven a long way for today’s event, yet another meet up done.
Then it was time for Amy for change her pump’s insulin/cannula/tube and it seemed to make a lot of sense for her to do it in front of Becky, Karen and their boys, both of which are getting a pump soon.
Amy took them through the whole process of drawing the insulin into the cartridge, removing bubbles, fitting the cannula, priming the tube and priming the cannula. I was proud of her for not only doing this in front of people but with the ease she did it under pressure. Karen suggested Amy does a YouTube video of it so perhaps that’s something for the future.

Session 3: Pumps and gadgets advanced

This session was also hosted by Claire and Melissa from session 2 and delved deeper into the world of pumps/CGM. Anyone without a pump would have struggled, in fact it’s fair to say that many of us in the room (Jane, me, Teresa, Dave) got a bit lost at points.
Carbohydrate counting can be tricky enough but now we were being introduced to Super Bolus and FPUs and multi wave bolusing. Eek!
Super Bolus
We learned that whilst normal bolusing is fine for normal GI (glycaemic index) foods there was a better method for high GI foods, i.e. those which would cause the blood glucose levels to spike very quickly.
Come in Super Bolus to save the day.
Roughly you ‘borrow’ some of the forthcoming x hours basal insulin units and add them to the normal food+correction bolus amount, at the same time you put on a temporary basal rate of 0% (or minus 100% depending on your pump) for the x hours.
Scott Hanselman’s “Hacking Diabetes” article has a section about Super Bolus which is worth reading.
There’s also Super Bolus information on DiabetesNet.com.
FPUs (Fat Protein Units)
This was the one that left many in the audience scratching their heads.
The idea is that extra insulin is needed for meals high in fat/protein.
Roughly you work out the calories from the meal, then work out the calories from fat & protein. With a bit of jiggery and pokery you end up with an amount of units of insulin to cope with the fat & protein, which in turns gives you the time you need to delivery that insulin over.
I’ve struggled to find the calculations themselves but DiabetesUK offered to send them to people who were at The Big Event so I hope to receive them soon. Whether or not we start to use them or not only time will tell.

Session 4: Coping with diabetes at school

Whilst I headed off to this session Jane went to hear the talk about emotional issues surrounding living with Type 1 Diabetes. I’ve heard from many that that session was one of these best of the day.
My session was hosted by Libby Dowling who was assisted by a parent of two children with Type 1. I’d met the parent, Fiona, before at the DRWF Wellness Day back in June. It struck me back then how well educated about diabetes she was, something living with 2 kids with D for many years makes you I guess.
Libby spoke about many things to do with children at school, about things Diabetes UK knew about and where they were seeking to go next.
Fiona told her story by reading an abridged version of her personal diary. It was quite shocking to hear the problems she had gone through and the prejudice and lack of equality her daughter received at school.
Parents spoke about the problems they received, the issues their schools had put them through as I sat in silence grateful for the wonderful school our kids attend. We’ve had no issues that haven’t been immediately rectified once I’d pointed out the errors of their ways.
Unbeknown to me, Baroness Barbara Young, Diabetes UK’s Chief Executive was sitting in the audience and stood up to discuss their plans, dealings with organisations and the way forward. I was impressed she took the time to attend a session and ask us what we all thought.
The key discussion that everyone agreed with was that someone at each school must be made accountable for any issues surrounding Diabetes (and other similar issues). Furthermore things were unlikely to improve until checks about a school’s equality/inclusion were properly included as part of their Ofsted report.

Summary

I thought I knew a lot about diabetes but going to an event like this proves I don’t.
I learn something at every event and that’s why I will continue to go to every one I can.
This event was great, its sessions, its presenters, its organisation and its opportunity for networking.
I haven’t really mentioned the childcare where people looked after the kids in a separate room whilst the adults were in sessions. Amy had a great time, playing all the games, drawing and playing with other kids, many of whom had Type 1 too. She’s made a new D friend of her own age and they’ve already started talking to each other online, which is great as we all know how good it is to feel the same as others.
The days after the event and we’re all still talking about how much we enjoyed the event so thank you Diabetes UK for organising it.

Best part of the day: the amazing Diabetes Awareness Dog

Claire’s dog Magic stayed by her side all day and whilst giving a talk during session 3 he started making a fuss over her. She left the room with Magic.
Melissa carried on the talk and it was a while until Claire returned to carry on with her side of the presentation.
At the end of session it was question time and the first question was “Claire, when you went out what level were you?”
Claire told us that Magic is trained to recognise a level of 4.5mmol or less.
She was 4.3mmol.
Wow.
Just wow.

Gav’s GBR30/30 Challenge – the final day

This article is about my involvement with Gav’s challenge, where I cycled next to him during the last four days of his challenge, whilst he ran 30 miles or more each day for JDRF and DiabetesUK.
If you’re expecting to find out about how Gav got on with his diabetes or running you’re going to be disappointed, you’ll have to wait and buy the book or attend one of his talks. Sorry but his tale is his to tell, not mine.

Donation, donation, donation

If you’d like to donate to Gav’s GBR30/30 Challenge fundraising pot please click this: http://bit.ly/gbr3030donate

Sunday, 26th May 2013 – St Agnes to Land’s End

Today’s route was going to be a tough one, at least 35 miles and having a 500ft hill towards the end.
Early on whilst planning this route I tried to convince Gav to start from somewhere further south, maybe Portreath or the Hell’s Mouth Cafe, so as to shorten the distance and make it easier on himself. Gav was having none of my advice and replied to one email with “If I’ve made it that far on the GBR30/30 then nothing will stop me, I will conquer any hills and any distance”…or something like that.
I felt for Matthew (Wood), Gav’s friend who ran with him on day one of the challenge starting at John O’ Groats; I don’t think he knew anything about this; I wasn’t sure how he’d feel about this. I knew Matthew had completed marathons but 35 milers, up big hills. I decided my best policy was to keep quiet about the route as Matthew followed me on Twitter.
Personally, I was never going to start from St Agnes as I was camping down near Leedstown, near Hayle, so I’d always planned to start from me, which meant I’d accompany Gav and Matthew for the last 20 miles.

Gav’s (planned) route, my route and elevation

Gav’s planned route was as follows – I say planned route as Gav decided that he hadn’t seen enough of Great Britain on his travels and decided to take a wrong turn, turning this planned 35 mile day into 40 miles!. I joined them at Hayle, roughly where the green triangle is shown:
GBR30/30 Challenge, Day 30, route map

Feeling guilty, getting nervous

Waking up to a glorious sunny day at the campsite my family and I chilled out around the pool, before I headed of to meet Gav and Mat shortly after lunch. In a way I felt a little guilty about this but in honestly laying by the pool felt great. After doing over 80 miles on my bike so far I, or more to the point my bottom, was glad of the break.
I was starting to feel nervous, a strange feeling that I’d not had on any of the previous days. I knew why: I’m no cyclist or athlete and I really didn’t want to muck up Gav’s big day by being too slow etc.. It was stupid really, I knew it was but I couldn’t do anything about it.

The “Where’s Gav?” Game

Jane drove me and my bike to the meeting point as we’d had no word from Gav. This was no surprise once we found out he was lost. Jane drove me up country lane after country lane trying to find the missing runners but we never did find them, so we went back to the meet point and eventually Gav and Matthew turned up, looking pretty fresh considering they’d already run about 20 miles.

Off we, erm I, go

Setting off from Hayle I felt supremely confident about the route: I didn’t really need a map; I consider this part of Cornwall as like a second home having spent so much time around these parts.
Along the Hayle estuary, onto the A30, off to Penzance, up the hill past Drift and then Land’s End. It couldn’t have been simpler I thought, forgetting that these guys who had already run 20 miles still had 20 to go. I was on a bike and much of it was downhill, so on came the (slight) guilt again.
Whilst much of it was on the A30 the route was generally beautiful, with Kites and Buzzards flying around us, sea alternating from this side to that and back again.

A chance meeting – this is what GBR30/30 is all about

On the A30 we stopped in a lay by for Gav to test his blood glucose. A random Land Rover pulled up and out go two people and walked over to us. It seemed a little strange at first.
“Hi” they said and told us that they’d followed the GBR30/30 information on Facebook and just wanted to come and meet Gav and say hello. They lived in Truro where the female was diagnosed with Type 1 Diabetes within the last year, aged 29. She was inspired by Gav and his challenge and just wanted to say “hi”. This to me epitomises GBR30/30: to bring awareness to people diagnosed with Type 1 Diabetes so that they can see that the can achieve great things, they may need to work around/with diabetes but it need not stop them. It was fitting that this encounter happened on the last day of the GBR30/30.

Water, water, give me water, says Gav

The route I’d planned would see Gav running into Penzance around the beautiful bay, in front of the mighty St Michael’s Mount. Things changed though when Gav saw the sea and he decided to go in for a little paddle, to help soothe his legs.
GBR3030 tweet about Gav having a paddle

Gav stands proudly in front of St Michael’s Mount, with 12 miles to go until Land’s End:
Gav in front of St Michael's Mount

So much support

At Penzance we met with everyone else before the final push. Well, I say push as it was nothing, it was still TEN MILES. That’s a distance I couldn’t run in a week, let alone one day where 30 miles had already been run. Knowing how slow I am at going up hills and not wanting to slow Gav/Matthew down I put my bike on the car and got taken to the next meet point and cycled on from there. In my mind the hill was too steep for me but as I drove up it I was truly gutted I didn’t attempt it.

Growing Oceans

Gav powered on towards Land’s End whilst I stayed at the back cycling behind Matthew, who had already run one of his furthest distances ever but still had 5 miles to go. I tried offering some encouragement but stayed away from the “just one more hill” comment as I could never be sure. Gav was on a mission, there was no way we were going to catch him up and I knew at this point that I wouldn’t get to see Gav finish at Land’s End, yet it didn’t matter as Matthew seemed to need my support more than Gav did at the moment.
The oceans grew bigger and bigger as the horizon opened up in front of us. We could see clouds on the horizon, or was it, no, actually, that’s the Isles of Scilly. Wow!

The last push

Safe in the assumption that Gav had already finished, Matthew strode on, passing the first/last pub in England, going through Sennen and finally on the straight towards the Land’s End Visitor Centre.
Gav’s Dad Vince was waiting with the Olympic Torch for Matt to pick up and run with.
Matt strode on, we could hear cheers getting louder and louder pulling Matthew towards the finish line.

Fantastic end

Everyone celebrated together, one big team, those that had done it, those that had supported it, all happy together. Gav looked knackered but elated, drenched in champagne. Now it was time for the photos at the signpost and this seemed to go on forever.
Other kids just there for the day saw the Olympic Torch and had their pictures taken with it; anyone we told about what Gav had just completed was amazed, many saying “ran, did you say ran?” to me; the photo taking went on and on.

Gav’s last day run video

A short video of Gav’s run, with some of the photos at the end

Matthew’s last day run video

Much more footage of Matthew, because I stayed with him for support

And finally…

Gavin and me at Land's End

Gav’s GBR30/30 Challenge – Day 29 to Gav, day 1 to Amy, day 3 to me

This article is about my involvement with Gav’s challenge, where I cycled next to him during the last four days of his challenge, whilst he ran 30 miles or more each day for JDRF and DiabetesUK.
If you’re expecting to find out about how Gav got on with his diabetes or running you’re going to be disappointed, you’ll have to wait and buy the book or attend one of his talks. Sorry but his tale is his to tell, not mine.

Donation, donation, donation

If you’d like to donate to Gav’s GBR30/30 Challenge fundraising pot please click this: http://bit.ly/gbr3030donate

Saturday, 25th May 2013 – Bodmin to St Agnes

Today was my 12 year old daughter Amy’s big day: she’d cycle her longest distance ever (27 miles); meet an inspirational athlete who, like her, has type 1 diabetes; raise lots of money for charity; run with Gavin into St Agnes carrying his Olympic Torch. My wife Jane would also be cycling with us today.

The planned route and elevation

Late the night before I changed the plan slightly so we’d join Gavin about 3 miles in, halfway up a 500ft hill. Why? Well to be honest I’d had enough of hills by this point and I didn’t want Amy’s big day to start with a 500ft hill climb, knackering her out with still 27 miles cycling and a run to the end with the Olympic Torch.

Setting off from Bodmin Jail, or Gaol to ye olde rascals

Gav was going to depart from Bodmin Jail and although we weren’t going to cycle from there we went to see him off on his run, to then join him 3 miles later. When we got there everyone was downstairs in the old jail checking out the cells, we ventured down there too but I knew Amy wouldn’t last long, she hates things like that.
Afterwards it was photo time and Gav had a little issue to sort out before we could start his run:

Our journey begins

Meeting Gav three miles in we parked the car in a country layby and left it there, hoping it would still be there 10 hours later. We were halfway up the hill we were trying to avoid but actually it didn’t seem to bad, probably because yesterday’s gales weren’t there any more, leaving a lovely sunny day for us to enjoy.
After a couple of miles Gav’s sister Kaylie joined him running and Amy warmed to her straight away, cycling next to her for the next few miles.
We passed by a road sign for a town which made me smile, especially whilst on a diabetes-related trip.

Lovely countryside, quite roads

For the next few miles we cycled on cycleways, the Goss Moor trail (where people on horseback rode past) and very quiet roads. The sun was shining down and I only was pleased not to need the fleece+jacket I’d worn on the previous two days.
Amy and Jane were enjoying themselves too.

A great support team

Throughout the day Gavin’s family met us at different points, giving Gav a cheer as he neared them, motivating through the next stretch.

Gav in “Countryside Meltdown Shocker”

On the way to the final checkpoint, Gav laughingly had a bit of a breakdown, longing for tarmac and concrete. Watch it happen:

A cock-up of a finale

day 29, new inn goonhavernWith 6 miles or so to go we stopped at the New Inn at Goonhavern for a quick drink, meeting up with Matthew Wood and his wife Clare – Matthew ran the first day with Gav and was going to run the last too. Gav’s Dad Vince bought me a refreshing pint of shandy and as he passed it to me Gav said “right, I’m off to finish this thing”.
“Erm, ok, Gav, I’d better drink this first.”
Matthew was staying in St Agnes and told have which way to run, but it differed to the plan I’d done previously, but I hatched a plan where he’d go one way and we’d go the other and get in front of him, to be in St Agnes ready for his arrival. Amy would then collect the torch and run with Gav to the end point, the St Agnes Hotel.
If only it had worked out like that!
Leaving twenty minutes later than Gav we sped down the first hill – at 35mph for me: “woohoo…yeah…damn, that hill goes up…and up…oh kak”.
The series of hills kept coming and coming, downhill then uphill and downhill again.
After cycling over 23 miles already the last 4 were killers to our tired legs.
Day 29, Amy with torch at St AgnesThis was broken by calls from Emilia, then Gav, then Vince (Gav’s Dad) then Emilia again; all asking us where we were and when we’d arrive. I had no clue.
Finally, St Agnes neared and Gav met us, gave the Olympic Torch to Amy and ran up the hill with her bike, whilst Jane and I followed, slowly.
Amy was elated, but sadly for Jane and myself we’d missed seeing her finish with the torch.

Day 29, finish group shot