T1Resources – hopefully a good place to start

That brief comment Partha made to Mike about discussing a new idea got me intrigued.
“If I can help, let me know” was my reply as we left the TalkT1 event in January.
A few weeks later that idea was discussed between a few of us and so started the project which became T1Resources: a new web site for Type 1 Diabetes information, where linked content would be reviewed by both a health care professional (HCP) and either a person with diabetes (PWD) or a parent of a child with Type 1, like me.
T1Resources.uk

A new idea?

There’s already so much information out there on the web but who knows what is valid, what is inline with clinical/medical advice, what isn’t, what’s just plain wacky and finally what’s that never-going-to-work-Type-1-cure-with-cinnamon.
T1Resources aims to address that issue by having links to useful information, with each link being reviewed by both one HCP and one PWD/parent.

A project with some backing

To work well and be effective this new site would need to get some decent (non-financial) backing, so Sophie – the project lead – started contacting many of the UK Diabetes industry charities and groups such as Diabetes UK, JDRF and INPUT.
So far it’s got the backing of two of the main charities and many of the groups frequented by the UK’s leading Consultants, Doctors and health care professionals. It’s early days so hopefully more will follow.

Reviewing the resources

Each HCP/PWD review is done separately from one another and it is then decided whether or not that resource is added. I’m not going to blog about the process as it’s constantly evolving at the moment.
In short if both HCP and PWD think the resource is valuable it will be added, if both say it’s rubbish it won’t be added. Anywhere in between and the editorial team will step in.
Of course, it’s not quite as simple as that.

Choosing the resources

Initially the team compiled a list of potentially usefull resources, several hundred were reviewed, many were rejected, the remaining were reviewed properly and one by one added to the site – something we’re still doing actually.
But that’s not the vision for T1Resources, the vision is that this resource is for PWDs/HCPs, by PWDs/HCPs, so there’s a page for suggesting a new resource to be reviewed/added. Not all suggestions will be added but each will be reviewed.

A few “thank you”s from me

To everyone involved in this project up to now and in the future, this couldn’t work without a lot of dedication. From the tiniest of ideas to hopefully a very useful web site, I look forward to seeing this site grow.
To Sophie for leading this project and tying it all together, this never could have happened without your input.
To Mike for all your tireless work. I doubt any of us really know just how many hours you’ve put into this, of the work you’ve given up to do ‘just another bit’, to the family events you’ve now doubt missed out on. I love design of T1Resources – apart from the bits I don’t 😉 Hopefully you can put your feet up soon for a little rest.

DISCLOSURE
In my usual Pay It Forward stance all my time spent on this project has been free, same for everyone. Even Mike has paid for the site/hosting himself, although I sincerely hope he’ll be getting that money back soon.

JDRF Discovery Day Bournemouth 5/3/16

nnn-JDRF logo cropped_2“Call me Kath” said Professor Barnard when I introduced her to Amy and Jane. Moments before I’d wished the earth would swallow me up as moments before that Kath had recognised me (from Social Media avatars/photos) and I hadn’t recognised her. A tad embarrasing and not the best first encounter. Still we we’re lucky that Kath could make it to the event as years ago I was almost responsible for her untimely death, after telling her how simple it was to replace a broken dimmer switch. Turns out it is simple if you’ve done it loads of times, not so simple if you haven’t. Anyway, I was pleased I hadn’t killed Kath and I’ll be careful not to discuss electrics with anyone else ever again.

Back in early November I had contacted JDRF South to ask if myself and others could present Nightscout at the Discovery Day in Bournemouth. Imagine that, presenting to a Discovery Day, little old me. I don’t even ask questions at events, let alone present but Nightscout is different, you know the world doesn’t know about it and you want to make people aware. Nightscout however is unregulated and has not past clinical trials so it’s very understandable that JDRF couldn’t let me talk about it.

And JDRF had other plans for the event in the form of the very well respected Professor Katharine Barnard. It’s unusual that a Discovery Day has just one speaker but when you’ve got the chance to give the floor over to a renowned Professor then you do, you most definitely do.

I’ve been fortunate to meet and chat with several Professors this year, Simon Heller, Helen Cooper and now Kath. Here’s the thing, they’re all normal, brilliant but normal, experts in their field, but normal. A far cry from the stereotype British films and TV would have you believe.

Being a mum of a child with Type 1 the down-to-earth Kath found a very warm and engaged audience. This was no presentation though, it was almost a chat amongst friends, a discussion group, a think tank. Laughter rang around, interspersed with more solemn moments as some said things they about Diabetes which have a negative impact. But Type 1 crowds are never down for long and out poured many positives.

Kath picked up on some points and told us it’s okay to feel like that, it’s normal. This meant a lot to many of us who naturally beat ourselves up on a daily basis for not doing quite as well as we think we should, or could. In reality we’re all doing an absolutely brilliant job, but how many of us actually recognise that?

One standout for me was something I’d read before but this time in sank in properly.
Kath asked “Well controlled Type 1 Diabetes is the cause of ?????’
‘Nothing’ answered Helen in the audience.
Absolutely.
We’re all so worried about complications but are actually helping our kids tremendously.
I walked away quite proud that we’re helping Amy achieve ‘nothing’.

In what seemed like no time at all Kath’s hour was up and we all felt sorry it was all over. But then it was time for the peer support socialising and properly chatting with Steve, Becky, Matt and Sonal as well as the usual JDRF Discovery Day chat with Lesley from INPUT.

I loved this Discovery Day and if I ever get the chance to see Kath present again I’ll be there. You should to.

Worst first ‘transition’ clinic ever?

transition

So then, transition is a process which takes time.

A first chat about transition

Shortly before Amy turned 15 in November we had a home visit from our lovely DSN who talked about transition and said that at the next clinic Amy could, if she wanted to, go in to see the Consultant by herself. Amy said ‘no thanks’ and said we’d go in together.
That clinic was yesterday.

A normal clinic

Normal practice is that Amy gets measured and weighed and we wait until either the DSN or the Consultant is available. Sometimes everyone meets together, all squished into a tiny room.
With the Consultant appointment we will produce reports from Nightscout or Diasend and talk over anything we need to. We chat about care, school, events, issues, new technologies, insulins and so on.
With the DSN (and Dietician) we talk about pump infusion sites and little else. The Dietician doesn’t mention anything since I called her out on some factless stuff she’s said in the past.

Yesterday’s clinic

Arriving in clinic and with measuring and weighing all done we sat alone in the waiting room.
The DSN arrived and called Amy, we presumed to get her HbA1c done, but after a couple of minutes she hadn’t reappeared. Jane and I guessed she was in the loo. After a few more minutes we realised she was in with the Consultant, alone, going against what was said in November.
Ten minutes later Amy reappeared with the Consultant and asked me to guess her A1C. I failed, it had risen 0.9% and it took me by surprise. To be fair as a family we have worked on – and have succeeded – getting her standard deviation lower, removing the hypos. So it’s no surprise it has gone up. What did surprise me was the lack of concern from the Consultant but I thought that we’d get the chance to talk it over.
We didn’t.
She disappeared with a ‘sorry I’ve got someone else in there now’. ‘Really, what about us, what about our appointment?’ I thought, presuming we’d get a chance later.
The DSN arrived and called Amy but this time we stood up and went in too much to the surprise of the DSN.
The standard checks of site scars and tissue were done and we were asked if we had any questions…

‘Can we talk about transition please?’

They seem surprised I would want to talk about how today’s clinic had gone and said that it’s normal.
I suggested that if us parents would not get the chance to talk then Amy might as well be in adult clinic already. The Dietician told me that I was ‘lucky’ (cue dumbstruck face) that they’d left it until 15 as their guidelines say anytime after 12.
TWELVE.
Are they seriously trying to say that they think it’s a good idea for 12 year old kids to go it alone? Or was this yet another CrapFact the Dietician dreamed up?

Do they think we’re both here because we don’t work?

Let’s not forget that I had taken a day’s leave from work and Jane was losing her day’s wages to be able to attend clinic as a family.
That’s something we don’t mind doing at all, but there’s no point if we have no involvement.
That’s a cost DLA offsets but it’s also the cost of another self-funded Dexcom sensor. Hmmm, pointless clinic appointment or another CGM sensor. Right now, there would be no contest if we didn’t need them.

Is it time to change Hospital?

The way I feel right now, the way Jane feels right now, and faced with a lack of education (previous and future) and so far the worst transition experience ever?
Yeah, I think it is.
But…
Amy is relatively happy here, but she doesn’t realise the care she’s missing out on, she doesn’t understand what is available elsewhere, she doesn’t understand what a good transition could be.
I don’t feel comfortable switching unless it’s a family decision.

A way forward

It seems the best way forward is to let clinic know our issues and let them have a chance to respond, to see it our way, to change.
Jane and I plan to do this early this week.
If that doesn’t happen I feel it’s time to move on.

World Diabetes Day 2015 and Blogaversary 3

Eiffel arrivalIt hardly seems like a month ago since I wrote last year’s WDD2014 and Blogaversary 2 post but now I reflect it feels like a lifetime ago.

Three years on and I’m surprised I’m still blogging, I thought my enthusiasm for this fad would have died out by now and I suppose it has a little as I just don’t seem to write so much these days. In reality the problem is time and I’m not sure that’s going to improve any time soon.

World Diabetes Day for me is about reflecting on what we’ve achieved during the past twelve months whilst looking to the future about we’ll achieve, plus the advancements of medicine and tech which help everyone with Type 1 Diabetes.
(I’m posting this early as I’m away for the weekend.)

Motto for the last year

I can sum up the last 12 months in three easy words: Pay It Forward. I’d like to think this has always been my motto but never so much as it has been recently. It’s important to me, it keeps the world spinning in my eyes, it makes may days brighter and when in (thankfully rare) darker moods it’s the only thing which gets me through the day.
So here goes for a few moments of the previous year, but first how’s Amy been getting on?

Amy’s worst moment with Type 1 – Where’s Jacques?

Quite recently we visited Versailles so it’s apt to think this last year was the best of times, it was the worst of times. Unlike in Dickens’s Tale of Two Cities there’s been no revolution but we’ve certainly had two episodes which came too close to kissing the guilotine for my liking. August was marred by two moments when we just took our eye off the ball and by rights Amy should have gone to hospital to quickly get her out of her nose dive towards diabetoketoacidosis. I don’t feel that proud that I didn’t take her in but we wanted to spare her the trauma, but she was scared, we were all scared and yet the first occurrence really proved what a great team our little family unit is, all pulling together for the good of Amy.
That first near-DKA occurrence was a dark moment for me particularly, I’ve never felt so helpless but at the same time the education everyone in the #DOC has helped me attain meant I knew what was going on.
It turns out I can’t even read this tweet without welling up, it’s raw:
nearDKAtweet
Whilst I got lots of advice from the #DOC it was really only Andy Sherwood who kept me going through this as without WiFi or data I relied on SMS and I thankfully had Andy’s number to hand. Thank you Andy.
Anyway, enough of this dark rubbish, let’s move on.

Pay It Forward – with the Pharmacists and Peer Support

In December last year I got the opportunity to help the next generation of Pharmacists learn what living as a family with Type 1 diabetes meant. I thought it went well but maybe not, I’ve not been asked back.
I’ve continued my role as Peer Supporter for Diabetes UK in a slightly lesser manner than before but still get to help people via email. It’s a vital service but I just couldn’t commit any time to answering the phones anymore.

January: time to say #WeAreNotWaiting

On January 1st, in ‘new start’ mode I pulled the trigger and ordered up the components needed to build xDrip and get Nightscout up and running.
10 days later with it up and running I realeasd my first blog about it: #WeAreNotWaiting thanks to #xDrip – Introduction.
I can’t possibly explain it here so read the above article or any of the several #WeAreNotWaiting posts I’ve done.
The xDrip blog articles went wild, especially in the States and are still used by many to introduce xDrip and Nightscout to newbies. I’m quite proud of that.
My involvement with Nightscout and xDrip moved on a stage when I was asked to be part of a team presenting Nightscout to many families at a conference recently. See the posts here and here or watch the videos of the presentations.
My involvement with Nightscout is contuining at a pace and I hope January’s blog(s) may prove interesting and exciting.

March: the #GBDOC conference

The first ever ‘unconference’ organised by Paul and Midge of TeamBloodGlucose was simply brilliant.
The opportunity to meet with several of my online friends was excellent and meeting Veeny was a highlight for me but the effort Jules put in to be able to attend made her the star of the show for many of us.
Later that evening we would learn that toothpaste is an unsuitable hypo treatment. It’s a shock eh?

April: Amy nails a week in Germany

Amy spent a week in April on a student exchange trip to Germany. Not only did she nail her glucose levels sufficiently to have a great time away – some feat considering the family lived so close to the Haribo outlet shop – but she spoken German all the time, one of the few to do so, and nailed an A in her GCSE which she took two years early.

May: Conferences, Public Speaking and Interviews

May was a big month. First, Amy and I spoke a little at the National Paediatric Team Meeting in Birmingham. A super scary time speaking in front of 200 health care professionals.
Then I had the most wonderful time with Chris, interviewing Dr Stephen Ponder about Sugar Surfing on behalf of Diabetes UK. Dr P is undoubtedly one of the nicest people I’ve ever met.

June and August: cycle, cycle, cycle

In June I undertook the biggest cycle ride of my life, cycling from London to Paris in a self-organised and unsupported trip with friends, raising £600 for INPUTDiabetes. The full self-organised London to Paris trip blog is available here if you fancy doing this yourself.
In August I rode the longest ride of my life, 100 miles, supporting JDRF and raising £430 in the Prudential Ride London Surrey 100.

And finally, some statistics

My blog has never been about statistics however it’s really nice to see them improve. Well I say improve, they’ve rocketed since blogging about Nightscout and xDrip.
In the first year the blog had about 11,000 hits.
In the second a huge increase to 27,000 that year, over 38,000 in total.
In the third, because of xDrip, it’s massively increased to 52,000 hits, and a grand total of over 90,000 hits.
The key thing about these numbers is that people are finding the information that matters, and that’s all that matters.

#PayItForward

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.

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
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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.