InPuT's virtual flash mob: The best kind of Sunday lunch get together

My passion for the work InPuT do is no secret.  Having witnessed first-hand the power of patients being given the knowledge, support and talking points needed to poke their consultants with a big technology-accessing stick, means I will always understand just how much they are needed in the diabetes landscape of the UK.  Just recently I had the pleasure of attending the Animas weekend and having spoken to several people trying - with limited success - to access technology which could improve their lives, I know just how much that need continues.

I've also seen first-hand how carefully InPuT spend the money they get. In a world where charities come under fire all too often for big business-like spending and abhorrent expense account-rinsing, InPuTs fresh and frugal attitude to spending is the antidote.  Encouraging the use public transport and relying heavily on the support of volunteers and part-time multi-skilled staff, their main aim is always to help people access appropriate diabetes medical technology.  And here's to not forgetting that they are the only charity in the UK doing this.

If everyone in the UK who uses an insulin pump donated just £1 a year, InPuT would have the money to continue their work in the UK.  If everyone who used some form of medical technology did so, they would be able to do even more.  So how can we give back to one of the lesser-known but truly needed charities? Well this Sunday we have the chance!

Rather than asking you to interrupt your usual basal dosing of money to the charities you support on a regular basis, InPuT's donation is just a quick bolus of support.  This Sunday, on the 151st day of the year (because NICE guidance TA 151 refers to the provision of access to pump technology, of course!), everybody is going to get 'together' for Sunday lunch, and in a virtual flash mob of support, will bolus just £5 to InPuT by texting 'INPU31 £5' to 70070.  

I've been 'pumping' now for 5 years, so this year I will bolus my £1 per year to InPuT as a tiny - but enormously appreciated - 'thank you' for the work they do.  Because I know how important it is that they have the funding they need.  So, I ask this:

Have you benefited from the work InPuT do?

Do you know someone desperate to access technology who InPuT could help?

Did you find out about InPuT after your own battle with accessing technology?

Do you want to help other people access a pump or CGM?

Do you want to be involved in a frankly fantastic event?

Could you spare just £5?

If you answered 'yes' to any of those questions, I will see you at lunch!

The InPuT team goes airborne!

It's no small secret that my favourite charity in this country is InPuT.  Led by patients, for patients, they are exclusively the UK's only charity increasing access to medical technology.  The team, made up of just two paid members of staff, Lesley Jordan and Melissa Holloway, aim to increase people's awareness of their rights to medical technology, and to advise them and guide them through how to obtain it, often giving them the key language and legislative knowledge which will allow people to speak to healthcare providers in a way they understand and will respond to. They also provide a key and impactive presence in parliamentary groups on diabetes and medical technology.

In 2012 I helped out at the series of roadshows the team put together, and saw first hand the powerful work they do, when a hope-lacking and frightened lady with type 1 explained that she no longer drove her car because she was so afraid of hypoglycaemia (low blood sugars).  A little InPuT advice and a letter to her team later, and she was placed on pump. Her heartfelt thank you letter said it all: that the UK needs InPuT to continue the work they do.

I've also seen how they work to keep their costs down and put the funds exactly where they should go.  Volunteers are encouraged to car share or take pubic transport to any events, and if Lesley can find a better deal for something the charity needs, she will find it.  In a world where charities come under fire for gratuitous expenses and disproportionate 'necessities', it is inspiring to see how dedicated InPuT are to what actually matters.  It is refreshing to see, and a privilege be part of.

This year InPuT need to raise funds in order to keep their dedicated service reaching as many as they do, so both Melissa and Lesley decided that there was only one thing for it: show their dedication to the work they do by jumping out of a plane!

Like this only muuuuuuuch higher up...

This coming Friday, 5th September, the InPut team (minus me, because I'm an enormous pansy-shaped flower) will be sky-diving their way to the ground in order to raise the vital funds they need, and they need YOUR help!

Check out their fund-raising pages here and here, and donate even £5 to help people access medical technology. 

Tell me, how much does your insulin pump or continuous glucose monitor mean to you?  Now imagine if your donation of just £5 could help someone else struggling to get one?

I've donated, can you help out too?

Lesley Jordan: show her your love!

A couple of weeks ago I blogged about the Quality in Care People's Award, which seeks to give recognition to the hard work put into patient advocacy by a group of nominated individuals.  You can catch up with the post here.

My passion for my work with INPUT and the team there is well-known, and I am so pleased to share that Lesley Jordan is one of the finalists!

Lesley has been working for INPUT for years, first as a volunteer and more recently as the Chairman, after having discovered the wonderful work they do in trying to increase access to medical technology for the people with Diabetes.  Lesley, herself a type 1 for more than 40 years and a pump, Diaport and CGM user, has taken the work INPUT do and brought it flying into the limelight to highlight the challenges faced by PWDs trying to access medical technology.

Please show her your support and thanks for the tireless commitment she gives to helping people with diabetes!

Vote for her here

Advocates, will you please stand up.

Do you want to know more about pumps but don't know where to start?
Are you a keen diabetes advocate and want an opportunity to stand up and be counted?

Want to talk about the burning issues in diabetes care today?

In 2012 the UK's only charity for increasing access to medical technology for diabetes, INPUT, decided to put itself 'out there' and take their knowledge on pumps and medical technology - and how to gain access to them in the UK - to the areas of the country with the lowest uptakes. In doing so, they reached out to the hoards of people either desperate for a pump and not able to get one, or interested but unsure of where to start, or what questions to ask.  

On 5th October this year between 11am and 3pm, they will be hosting their Cornwall Roadshow at the Alverton Hotel, Truro.  Here, the usual leaders in the market providing pump technology will be there to pose your questions to, to chat to about yours or your loved one's hopes and expectations from a pump and offer you the chance to see them first hand. 

This year however, INPUT have added even more to get involved in and excited about.  Following the usual superb roadshow event on Saturday 5th October, Professor John Pickup who is a leading Professor of Diabetes and Metabolism at Kings College London, will be around for a Q&A session about all things diabetes.  Professor Pickup has quite literally led the way in diabetes research, treatments and technologies, is an expert advisor to the National Institute of Clinical Excellence and has received countless prestigious awards for his contribution to the field of diabetes.  NICE.

But if somehow even that wasn't enough for you to get excited about (frankly, you had me at 'Professor Pickup'), then on the Sunday morning (6th October), the INPUT team will be hosting a patient forum 'open mic' session where bloggers and advocates are invited to get involved and get talking.  About anything; about everything.  

So if you have something you want to get talking about; an idea burning its way through your mind; a challenge you think you could help sort out; a vision you want to share, or just a conversation you want to start, then this is your chance.  

Get in touch with INPUT for more information on this event.

The INPUT team look forward to seeing you there! 

CWD Friends For Life 2012: Hope and Onesies

In 1995 an inspirational man named Jeff Hitchcock, the father of a little girl who had a disease called type 1 diabetes, decided he would use this quirky new thing called 'the Internet' (which he claimed would be a 'big thing') to create a website where parents of, and children with, the condition could talk to one another and find friendship and support.  It quickly caught on and before long became an institution to its already devoted members and growing number of people looking for just what Children With Diabetes could offer; unity.

Five years on in the year 2000, a lady named Laura Billetdeaux, herself a member of CWD and parent to a young boy with T1, posted a simple message that she was heading to Florida and should anyone wish to meet her there, she would be waiting.  Laura is a person with whom you immediately feel at ease.  She is confident, and warm.  On that fateful day 500 people felt the same way and descended upon Florida where the annual Children with Diabetes event, was born.

Almost two decades on the CWD conference, now dubbed 'Friends for Life', draws hundreds of families from across the United States on a yearly basis. For parents it is a place of companionship, learning and support. For the children, it is an opportunity to let down their hair, rekindle old friendships and have fun just being a kid. All food on offer is carb-counted, green arm-bands show membership to the club and hypo stations dot the halls, making it the safest place in the world.

Four years ago CWD came to the UK and this, was my first year. 

The buzz on Friday night was electric as hundreds of people excitedly arrived at the Beaumont Estate hotel in Windsor.  Which room you were in or what the hotel was like was secondary, this was a time for finding old friends.  And making new ones.  As the sea of enthusiastic people ebbed and flowed through hallways, the atmosphere was thick with excitement. 

The sponsors Animas, Medtronic, Cellnovo and Accu-Chek were out in force with balloon magicians (most awesome CV title ever!), face-painting, cuddly toys and an X-Box Kinnect to keep the kids suitably pumped (no pun intended!).

People, having a ridiculously wonderful time!

Olly Double, everyone's favourite comedian and T1 parent, whom I had the pleasure of meeting at the Spring Wellness day a year ago, opened the floor on Friday with a his brilliant stand up - including an audience-priming version of H-Y-P-O (to the tune of YMCA). Any opportunity to look at the brighter side of diabetes (yes, there really is one) is a welcome event.  Then it was drinks in the bar and off to bed.

Saturday began with an inspirational talk by DiabetesDad  Tom Karlya which kicked off the day at 9am.  By 9.13am, the first tears rolled down my cheek as he told the story of his daughter's diagnosis when  - in his words - she had IVs in both arms and was asking him to 'fix'. He told us with conviction that diabetes 'just won't do' and asked us to take responsibility for looking out for each other.  As the parent of not one but two T1 kids, he told us with the most admirable honesty about the mistakes he had made over his years (right there with ya, Mr K).  Between the laughter (he tells one hell of a good story) and the tears, there wasn't a dry eye in the house by the end.  

The weekend progressed with talks about advocacy, balancing food, exercise and sick days along with a host of other sessions packed with information to help build an arsenal of weapons with which to take diabetes on. We were taught how to avoid spikes after meals by all-round dude Gary Scheiner and how to negotiate family life with diabetes by the most 'New York' New Yorker you'll ever meet, Joe Solo. InPuT presented our own talk on how to get the best pump support (with my own section on Managing Expectations and how to avoid Competitive Parenting).  But for me the session which stood out above all others was one in which two psychologists, Jill Weissberg-Benchell and Korey Hood, led a group talk on Avoiding Burnout. Guaranteed to be a highly-emotional session by virtue of the subject matter, when the first person spoke with their voice already cracking I knew this would be nothing, if not a session to connect us.  For a precious hour we shared stories, offered hope and connected with people    who 'get it'.   Finally, Lesley Jordan profoundly said, "My purpose of being on this planet, is to do more than get a perfect HbA1c."  The room agreed and for just a moment had not a single word to add.

Learning from each other how to avoid burnout

As Sunday came to a close and the final talk, jam-packed with hope, was given by Jeff Hitchcock himself, I couldn't remember the last time I had cried so freely, re-charged so quickly and connected so deeply.  People you had never met before, and might never again, took the time to smile and be your friend.  The kids and young people, in the wonderfully inexplicable way only kids can, launched a mini-craze within the world we had created of wearings onesies 24 hours a day.  And as I basked in the glow of the event and looked on as the last of the revellers peeled away, emptying the fridge of the hotel's remaining complementary Diet Coke as they went, I knew, this weekend would not be forgotten.

This will not be my last Friends for Life.

The Input team, confusing the 'Madness' dance with the one from Blues Brothers, at the Roche 'disco'!

You know you want to

Well ladies and gents, next weekend marks the occasion when INPUT bring the next in their series of insulin pump roadshows to Nottingham. So if you want the most up to date information on insulin pumps and who could have access to one according to the NICE guidelines then come along and join us....

'InPuT' Roadshows head to Chester!

Well it's that time again; the time for InPuT (the UK's INsulin PUmp Therapy advocacy service) to head out onto the streets and hit your local town to tell you about who can have access to a pump and how to get the ball rolling.  The Luton Roadshow was a resounding success and we've had some fantastic feedback from people who came along. If we can continue increasing the number of people who get to the exhibition, I am hoping there will be dozens more pumps on order by the end of the year - so you should prepare yourself, Mr NHS.

This time, it is the turn of Chester to kindly play host to the InPuT team and we will be coming along to MacDonald New Blossoms Hotel, St John Street, Chester, CH1 1HL between 1pm and 4.30pm with a wonderful bunch of insulin pump companies.  So we invite you to come along and have a good look at some of the pumps on offer in this part of the world, ask questions of those who wear them and get advice on whether or not you can get funding for one.

Here is the poster with full details!

The InPuT team look forward to seeing you there!

InPuT Luton roadshow - a resounding success!

There aren't many things I would give up my Saturday for.  This is my day. In fact, come cricket season I usually relish the days when the husband heads off to a game and I can grab a few hours to myself to batten down the hatches, get some 'me time' and watch a bunch of really girly crap on TV, like 'Road Wars' and 'Police, Camera, Action'.  Tomboy alert!

Well this Saturday was InPuT's first 2012 Roadshow which, as someone who is an avid supporter  of InPuT, I volunteered to help out at.  The brainchild of Lesley Jordan, the roadshows are a way of getting the word out about InPuT, insulin pumps and NHS funding.  Areas were chosen by looking at where in the UK insulin pump uptake was at its lowest and Luton (the lowest in the UK) was an obvious choice as our starting point.  Having had no way of estimating numbers and no idea how many people would want to come along (or even whether anyone had successfully received a leaflet or seen our media build up), I have it on good authority that the whole InPuT team were suffering synchronised insomnia at 3 am, worrying about an empty room filled with some not-so-impressed medical reps, wondering what they could have been doing instead of this, and a rapidly cooling pot of coffee to cater for 40, being slowly chipped away at by the humble three-strong InPuT team! My concerns began to ease however, when the first arrivals showed up 30 minutes before we even had the coffee at the ready.  By mid way through, we had over 20 attendees.

For someone like myself, an extrovert with a penchant for talking about anything diabetes related, chatting to such a wide variety of people was as insightful as it was at times frightening: "My hypos aren't debilitating, but I am too scared to drive any longer".  "My son isn't allowed one as his HbA1c is too high."  I'm not sure if it is poor education on the part of the professionals wreaking havoc in the Luton hospitals or whether the PCTs just don't want to 'give it up', but within an hour I had spoken to 4 different groups, three of whom had a type 1 diabetic with them who by my count, should already be on a pump.  There were conversations with those who would be at a squeeze to fit the criteria (HbA1c consistently over 8.5% or debilitating hypos) and those who have been fitting it for years.  There were children, couples, older people and a family with three generations of it (who I immediately fell in love with when the mother  described them as "a group of five; 3 diabetics and 2 normals").  I had the chance to demonstrate my own pump, put minds at ease that you can't feel the cannula, that you don't have carry it around in a custom made rucksack and that for a girl, your boobs come very much in handy! 

We had superb attendance from the pump companies too, which I feel only served to strengthen the motivation to push for a pump.  Although InPuT will clearly never endorse one pump over another, the unique selling points of all the pumps on offer were out in force.  Medtronic were there with the low-glucose suspend and integrated CGM capability.  Accu-check were there with the Combo pump, a snazzy remote control enabled pump with integrated bolus calculator (no need to rummage through the clothing with this one).   Cellnovo (not-yet-available sexy patch/micro pump) were there showing off their 'smart-phone like' technology.  Animas came with their waterproof pump (hello to the surfers, swimmers and watersports types) and soon-to-be integrated Dexcom CGM.  Advanced Therapeutics (the folks who brighten our drizzly shores with the Dexcom 7+) were also there showing support and I took the opportunity to finally meet the director, someone who had been on the diabetes circuit for decades and is a true time-tested expert in the field.

After three and a half hours of talking away, we had just shy of 40 people come along, of which we estimate 21 people had type 1 diabetes. I would suggest that two thirds of those people at least, should already be funded for a pump. People generally seemed to stay for at least an hour thanks to the wealth of information they could soak up from the reps.  The coffee pot most certainly ran dry.

There were a few laughs as two thirds of the InPuT team near on cleared the Medtronic stand of their Mio's (cannulas complete with disposable inserter) after two failed cannulas of our own (what are the odds?!).  And thanks to me having avoided caffeine for a week and drinking copious cups in my nervous excitement, I was twitching all the way home (and into the early hours).

All in all the day was a GREAT success and certainly something I am prepared to give up my precious Saturdays for.  If those 21 diabetics don't have success (which would surprise me considering InPuT will continue to support them through their applications and offer advice and guidance where we can), the pressure those newly motivated people will put on their diabetes teams will undoubtedly go some distance to changing the attitudes of the professionals and people holding onto all the power.

The power is ours.

Next up, we are coming to you, Chester!

And FYI Anna, find a photo pose which disguises chin-zilla!

INPUT Roadshow heads to Luton!

I can't say how many times I have seen/heard/read people wanting to know more about pumps; how do they feel, what do they look like, how big are they, can I get one?  It's hard to get to everyone at once.  Well, INPUT are starting off the 'getting to everyone' by coming to Luton and are ready for all your questions!  

If you are interested in a pump but don't know whether you qualify, want to have a poke around one first, want to know how to start the process of enquiring about one or just want to ask a question, come along on Saturday and ask any pump related question!

Any questions just let me know and I will endeavour to help out where I can.  I will be there along with members of the INPUT team and a number of the pump companies keep to show off their products.

See you there, everyone!

AP

Fifth Annual Insulin Pumps Association conference

Last week (apologies for the delay) I was invited by INPUT to attend the Fifth Annual Insulin Pumps Association conference in Manchester. Never one to miss the opportunity to jump face-first into events like this, I gladly accepted and before I knew it was boarding a train to Manchester and syncronising hypos with Lesley of INPUT fame.

On arrival and another spookily timed skyrocket out of (ahem) 'optimal range' on both our parts, Lesley and I were having dinner with some of the many other attendees at the conference including several bods from Roche and some healthcare professionals from a number of different hospitals around the country. It wasn't long before one of the sales managers from Roche had spotted that I was on a Medtronic pump and had begun their sales pitch at light speed. Frankly the Combo pump and blood glucose meter did impress, seeing as I was rifling through my bra for most of the duration of the meal to adjust insulin doses as each delicious (and very non-low carb) course came out, while all those with the combo remote controls were testing and bolusing (taking a shot of insulin for their meal) with ease. Truthfully I think the next pump for me will be a tubing free one seeing as the tubing is, for me, the biggest drawback of pumps in general. But it did show me that while my beloved Paradigm VEO was top of the market (again, just in my opinion) when I got it two years ago (is it really two years already??), it has been somewhat overshadowed by the newer sexier pumps on the market in recent years. Funny how quickly things move nowadays isn't it? Our diabetic predecessors must have been using metal and glass syringes for the 50 year mark before hypodermics came in, and now within 2 years the sexy new pump you once sported is the equivalent of the cassette tape to the ipod or what the horse and cart is to the Porsche.

It was with an eager attitude that I met Lesley for a suprisingly low carb but tasty full English breakfast the next morning and with that the conference was under way.

The exhibitions room was as always packed with impressive stands. But this being the first pump specific conference I had attended I was keen to get stuck in, knowing full well that the newer model Omnipod would be on show and I was hoping, the Cellnovo as well. I'd heard rumours about the Animas display which can be seen at these events and true to form, the most eye-catching stand had to be theirs, with a fish tank fully equipment with water, lights, real fish, plants and yes that's right, their insulin pump (!) suspended mid-tank. Although most pumps posit the same level of waterproofness (fairly confident that isn't in the dictionary) Animas are one of the only (if not the only) pump provider who are happy to guarantee their pump when submerged in shallow water. Great waterproofity? Waterprooficiousness? What IS theword!

There were also displays from Medtronic, Adanced Therapeutics (the company who bring the Dana pump and Dexcom CGM to the shores of the UK), Omnipod and my personal holy grail, Cellnovo.

I had a great chance to have a talk with Gary from Omnipod, who went some way to reassuring me that the teething problems I had experienced when I first made enquiries about their system had now been ironed out, thanks to a multiplying workforce and a chance to get their feet under the British market table. The new pod is certainly smaller than the old one and a contender against the much smaller and sleeker Solo (don't get too excited, its not avaialble here yet) and Cellnovo (watch this space, VERY soon). In truth I still have my doubts about Omnipod but only based on the fact that Medtronic's customer service still is - as far as I am concerned - second to none. That being said, the mention of Medtronic brings me on nicely to the holy grail of the day, the Cellnovo.

For anyone concerned about customer service, one of the head honchos at Cellnovo used to be on the Medtronic team and not just any team at that. She started the whole blogger forum craze and was, from what I hear, absolutely a key player in getting Medtronic's customer service at the very high level it is, which has been continued and pushed forward by their Justin Gray. So for a 'new' company who are just about to release their pump in the imminent future, I have a lot of faith they will do well. This, brings me to their pump.

I have looked at the website god knows how many times, but had until this point never had an opportunity to see it. 'Miniscule' is probably the most fitting term, considering inside it there are hundreds of parts, computers, insulin resevoirs and so on and so forth, that allow it to do it's job. It is technically a patch pump as the pump itself sticks to the skin using a velcro attachemnt, but the tubing between the pump and cannula can be varied allowing you to continue to put it in a pocket if you wish. That may sound like it defeats the point, but I have come across suprisingly large amounts of people who say they would like the option of hiding the pump if they were wearing a slinky dress or tight fitting shirt. I don't share these needs, but completely understand the concern. With the Cellnovo, that is possible. It is also equipped with a smart-phone like handset which allows real time measuring of impact of activity on BGs, acts as the remote control for the pump and frankly for the growing numbers of young people on pumps, will be a fantastic selling point. Considering for the most part young people are already well familiar with touch screen phones and wireless handsets.

It was great to see the Cellnovo and their team in action and provided there are no horror stories about the pump failing or customer service nightmares, I imagine this will be the kind of pump I aim for next, albeit in two years time!

But the reason above all else that I was there,was to attend the conference and hear the speakers. The name of this year's conference was 'From Cradle to Grave' and the overall message of the conference was that insulin pumps can be used in ANY portion of society and at ANY stage of life. We were given case studies of people at end-stage renal failure who were on pumps, babies as young as days old who we were shown photos of (which to be honest I found a bit shocking due to the very tiny body connected to the pump, although the shock was more a feeling of sadness that someone so 'new' had to already live that life). We talked about the benefits for pregnant women, children and pretty much every group you could imagine.

I see a specialist team at Portsmouth who are without a doubt a proactive and insulin pump friendly team without whom I would not have been on the incredible journey I have travelled in the last two years, but without a doubt they had nothing on the speakers at these conferences. In Cambridge they purport to have 50% of all their Type 1 child patients on pumps, which without a doubt blows the NICE benchmark out of the water and deeply puts to shame all those PCTs who are yet to welcome and encourage pumps for their most at risk patients. The word 'proactive' doesn't even begin to cover how forward thinking many of these professionals were. When I arrived at Cellnovo, the chair of the conference was even stood next to me (although I didn't know who he was yet) asking questions about what the benefit to the patient, this pump would have. The benefit to the patient; have you ever heard such madness! In some areas they seem to disregard even the benefit to the PCT, let alone the humble patient!

We had a fantastic talk from Candice Ward from Cambridge University Hospital about where the artificial pancreas project was going and how CGM and pump technology could well be the key components which will significantly impact the lives of diabetics. Although it was clear she felt this was not quite an imminent success, she did intimate that it was on the horizon and creeping closer to us day-by-day. My brain has a little party whenever someone says that.

All in all it was a fantastic day and the messages I took away were:

• Don't buy it if you are told your clinic doesn't do pumps, talk to INPUT.



• No matter your age, demographic or favourite day of the week, ASK THE QUESTION OF YOUR SPECIALIST



• No-one is too young, too old, or 'too far gone' (whatever that means) not to benefit from a pump



• Cellnovo are the ones to watch



• There ARE some highly proactive hospitals in the country, so ask about changing if your clinic fob you off.

All in all a brilliant day.

The patient perspective

So a couple of weeks ago I was contacted by someone doing some research into diabetes products who was keen to pick the brains of us opinionated blogger-type folk. As I prepared for my over-the-phone grilling, it got me thinking about how much of a business this diabetes lark really is. Not that I hadn't already picked up on the whole big business vibe, what with CGM in its current form costing anything up to £200 per month to fund for those of us who haven't been able to put forward a successful bid for funding through the 'National Health Service'. Even the humble insulin pump is not yet available to all. In fact, in some places you still can't get an insulin pump if your Consultant or 'specialist' happens to think they are just a fancy gizmo. To find out a little more about insulin pumps and whether you may be eligible for one, check out INPUT's pages.

An equally pancreatically defective friend of mine and fellow blogger over on Shoot Up or Put Up once said that she was happy for diabetes to be big business, because all the time the 'Big Pharma' companies are striving to improve their products or come up with better ones to the last great idea, us diabetics are only set to benefit. In terms of quality of products, anyway. Unfortunately access to them remains a bit of a lottery. Granted, in some areas (such as CGM) it can still be difficult to actually access the products thanks to the hefty price tag, but that is the way the world works in many areas, not just diabetes. In terms of quality the ideas, improvements and developments seem to literally evolve day-by-day.

Unfortunately I can't talk about the topics we covered here for obvious reasons, but it was a great reminder of the development and progress that diabetes research is constantly undergoing. And with that development comes improved products, services and patient experiences. It is always refreshing to be consulted on my perspectives as a diabetic patient and user of (and payer for!) various products which improve the lives of those working hard to manage this condition. To be asked what I think, what I would use, what I wouldn't and where I see the future going, is a good reminder that the patient is at the heart of research more than ever.

At the end of the day it is us, the diabetics and users of these products, that keep these companies in business and urge them to strive for more. When it comes to our health we are demanding - and rightfully so. And if a product comes out which doesn't quite cut it, we will let them know. If a great one comes out, we will use it. This, is the challenge.

Anna - very excited about our future.

Dropping in on Parliament

Luckily for me I was dropping in on Parliament a week or so before the whole 'phone-hacking scandal' furore which has gone global so things were a bit quieter when I was up there. But nevertheless I was once again invited by Lesley of INPUT fame, to attend the APPG (All Party Parliamentary Group) for Diabetes which happened to have a lovely meaty topic; the artificial pancreas (AP). I'm afraid this week has been a jam-packed one so this post should have been written a week ago but better late than never, here it is.

I met with Lesley at Waterloo station and as always it took us all of 6 or so seconds before we were both eyeball deep in diabetic rhetoric. Not that I'm complaining of course, seeing as I'm sure by now my work colleagues could calculate their own boluses (doses of fast acting insulin), know not to exercise with blood sugars below 4mmol or above 10mmol and are amazingly well-versed on the finer details of the difference between type 1 and 2 (let's just say 'everything').

I won't go through what an APPG is again, but here is a useful source if you would like to know more about what is going on 'behind the scenes' on the diabetes front, including APPGs. Or I gave a run down of the broad details in my last post about the APPG on Improving Patient Access to Medical Technology.

The actual APPG sadly wasn't nearly as well attended as the newly formed Medical Technology one, but really it was all together a different experience. For starters, the true star of the show was 8 year old Theodore Collins, or 'Theo' as he boldly told us. He is one of the children (52 of them in total, if I remember correctly), currently taking part in one of the very first trials into the AP which is being funded by JDRF (the Juvenile Diabetes Research Foundation). Theo gave a fantastic presentation about the trials he has been involved in and described the benefits he felt the AP would bring him; including having to worry less during sport and not having to rely on his 'friend', Lucozade. But as wonderful as the presentation was, I think my favourite moment with young Theo was right at the very start of the APPG when I suspended my pump trying to ward off a very well-timed and contextually ironic low blood sugar. Lord Pumpington gave off his tell-tale triple beep with which all Medtronic customers are so familiar, telling me the pump was suspended, only for Theo's head to whip around and catch my eye. As we exchanged knowing glances it was clear - he was on a Medtronic too. "I'd know those beeps anywhere, Lady "his eyes somehow told me.

But moving on, we were also given a presentation by Sarah Johnstone of JDRF Policy and Communications fame, who gave a passionate description of how JDRF have so far put over £50 million into research focussing on the artificial pancreas and would continue to strive for access for all type 1s to insulin pumps. This was an issue which Lesley had gone into the session with on the tip of her tongue, because - as she put so well - if you don't qualify for a pump, surely the artificial pancreas will be completely out of reach. A contentious issue it may be, but Lesley is quite right that all the technology in the world is a fine thing, but if there are people out there who don't fit the NICE bill then that technology will sit on the shelf, only accessed by those with the [bad] numbers or those with the cash.

But perhaps the most interesting talk was given by Dr Daniela Elleri, one of the researchers working on the JDRF AP project. In its fourth year, the results speak for themselves and certainly the overnight periods are showing how vastly improved overnight control is when the technology of the pump, along with the technology of CGM (Continuous Glucose Monitoring) is combined with the technology of the AP. It also described how rather than trying to create some super-system, the project is incorporating already commercially available products such as our well-known friends the Animas Pump and the Dexcom sensors. It will be interesting to see how that side of things goes, as it would just seem to me that we could end up heading down the route of having a 'sponsored system' involving different charities backing different products which aren't available unless you are loaded. I can imagine it now, "Buy your Dex-Mas Artificial Pancreas, only £500 per month to fund - sponsored by JDRF"! Hmmm.

Anyway, cynicism put aside it was very interesting to hear how far along (or actually, how early on!) the studies really are. It showed pictures of children wearing pumps, with CGM attached and mini laptops in reach - poised to adjust the basal levels on the pump at any minute, according to what the CGM dictates. It was clear that the AP itself is still in the very early crude stages and isn't at present even comprised of one single 'unit', but instead makes those in the trial look a little more like a teenager at a computer gaming seminar; happy, but lost amongs the wires, controllers and computers. But the fact that it is being tested on people already is still - I feel - a reassuring indicator that this will hit mainstream treatment one day. I have yet to meet someone who has a background knowledge of or involvement with the AP who hasn't seen it as the biggest development in diabetes in the last 50 years.

It's almost as exciting as the time we moved on from pig insulin. I know. Goose-bumps ay! :)

Finally we had some time to ask questions and discuss a few issues. We drew to a close and Lesley and I went for the post-APPG cup of coffee (now a ritual in itself) and to discuss the session.

After much to-ing and fro-ing and putting the world to rights, we bid each other farewell and went our separate ways. And as I boarded my train and sat myself down, I recognised that feeling creeping in; hope.

Keep watching people, this will happen.