Before the sleepover event at the Planetarium, Abbott sent Pumplette a free, Freestyle Libre to try. What follows here is Pumplette’s first encounter with the Freestyle Libre. She hadn’t seen the product before this & the video shows her every reaction…..!
This video is in no way meant to be a tutorial!! Please, don’t take medical advise from us, it’s a wonder Pumplette has survived my ineptitude for this long. I’d hate to be responsible for anyone else’s health, as would she – she’s only 12!
(I will add a footnote that the insertion in this video is NOT typical. It should be much easier to gently press the insertor onto the skin in order to deploy the sensor.)
Big disclosure – Abbot invited myself and Pumplette to attend this event in the hope that I would blog and tweet about it. Pumplette received a Freestyle Libre meter and two sensors to try before the weekend. Abbot do not have any editorial control or input into my ramblings!
Peter Harrison Planetarium
If you went down to the Greenwich Royal Observatory at the weekend, you’d have been in for a big surprise!! If you went down to the Greenwich Royal Observatory at the weekend, you’d never believed your eyes. For lots of children, aged between 7-11, had gathered there, for certain because they were to participate in the first ever sleepover in the Planetarium! (OK, it doesn’t properly scan with the original music, but I’m sure you get my drift!)
Early evening, in the London mist, a gaggle of very excited children and some slightly apprehensive looking parents, arrived at the Peter Harrison Planetarium, looking forward to an evening of learning and fun, followed by a night of, well, fun, before reemerging the following day to sleep. This event had been organised by Abbot to promote their Freestyle Libre which has recently received approval for use in paediatrics. The Libre is a medical device, labelled as flash glucose monitor, where the wearer waves a meter over a sensor that has been stuck to the skin with a fine glucose sensor that is inserted into the skin. The sensor detects glucose levels in the interstitial fluid, just below the surface of the skin. By waving the reader over the sensor (which is roughly the same size as a £2 coin) a bg reading is displayed on the meter along with a retrospective graph showing what bg levels have been doing. This enables the wearer to make fully informed decisions about basal changes or bolus changes that may or may not need to happen. It also means that no fingers have to be pricked in the checking of bgs. The idea of this sleepover event was to enable a whole herd of children with T1 to have a fantastic time together where they could just enjoy the fact that they were T1, as their muggle siblings stayed at home and it was very definitely all about them!
For Pumplette, being one of a majority, when it happens, is a very empowering and liberating experience. She loves socialising at events like these as there is a very quick shorthand for all participants. No one stares at her as she checks her bgs or dials up a bolus on a pump. No one asks her whether that hurts or what does that do or can you have that. These are lovely changes from her norm when she is out and about with new people. True to form, within the first half an hour, over food, Pumplette found a kindred spirit and the two girls were then utterly inseparable for the remainder of the event.
Food scoffed, and bolused for, it was then time for us to watch a wonderful show from the Planetarium where all the star gazers were treated to a whistle stop tour of our solar system, galaxy and the universe! All of this AND a message from Stephen Dixon, encouraging all the children to maintain a ‘can do’ attitude in all they do.
Once the show was over, the children were spirited away by two men, who answered to the names of Sharky & George, & whom I can only assume are direct discendants of the Pied Piper. Every child streamed out of the auditorium after this pair and it was only occasional hypos that coaxed them to return to a parent! Whilst the children were gone, the parents listened to a presentation given by Tabitha Randall, a consultant paediatric endocrinologist from Nottingham. Tabitha reported on the efficacy of the Libre when used by paediatrics and how it could help with basal testing and carb:insulin ratios. The different graphs and data that the Libre records are easy to interpret and Tabitha reported that many adolescents like the absence of alarms found on conventional cgm systems. I was struck by the possibility to reduce conflict between parent and child over whether bg checks had occurred during school hours. This system will retrospectively store the previous 8hrs of data, so even if a child is reluctant to check bgs under the scrutiny of their peers, this system can provide them with a swift and discreet way to see how their bgs are getting along. A finger prick check is still needed before any insulin is administered, but we all know that diabetes in the wild doesn’t always adhere to the necessary safeguards put in place to protect children and adults alike.
I felt the strengths lie in being able to give child and carer a clear picture of the things that are going on day to day. Carers are then able to support the child to make changes armed with a “full picture” knowledge that a continuous graph can provide.
Tabitha had barely uttered her closing sentence when a few of the children burst into the auditorium to demand adult bodies and assistance with the tug of war deciding bout that was about to commence in the long gallery that was to be our bedroom later that evening! Much hilarity ensued as many of the parents joined in (probably a little more competitively than their offspring). I am more chuffed than befits a grown woman at having been on the victorious end of the rope!
By now it was quite late, and the children indulged the adults in the farce that they called “getting ready for bed and sleep”. The adults in response indulged in pizza and downing their own body weight in tea and coffee! Once pyjama clad, the children were then led toward the arms of Morpheus by Sharky and George who this time had transformed themselves from hurricane whipper uppers to serene story tellers. This was, however, an optimistic wheeze, and the reality was most adults and children alike were properly asleep around about the 1am mark.
The Abbot staff did a great job looking after everyone, ensuring all T1 eventualities were catered for (seriously, an entire battalion of hypo T1s could have gate crashed the event and there would still have been hypo treatments and biscuits to spare!) and the staff were the last ones standing overnight – some even being called upon numerous times in the small hours – and the first ones up and at them on the Sunday morning. Every single child there had an absolute ball and hopefully it will have given lots of parents watching the confidence to know their children would have a blast at any sleep over. All it needs is a little planning before, and your child could be gallivanting to sleep overs all over the parish. Or the county. Or the country. Or the planet!
March 8th is International Women’s Day. It is also the day that I became a mother to three daughters. Small was born exactly 10 years ago on a chilly Wednesday evening on the sofa I’m sitting on now to write this post. Her sisters were fast asleep upstairs, and the only people to greet her upon arrival were myself, her Daddy and a midwife. Just.
Since that day, the power of the female spirit has continued to be exceptionally strong and fierce within these walls. Poor Mr Understudy must now contend with four opinionated and feisty females in the house, where the three girls proffer considered opinions on every tiny minutia of our lives.
The three siblings fight together, laugh together, cry together and celebrate one another’s triumphs together. Often people wonder how Big and Small feel about the extra attention T1D demands in our lives and therefor the extra attention Pumplette has. I can, in all honesty say, neither have ever expressed feelings of resentment towards this necessity. In fact, Big recently said to me that it makes her love both her sisters more. For she appreciates how fragile and precious our lives are.
My daughters’ childhoods will always have been shaped by Pumplette’s diagnosis. They couldn’t not be. However I refuse to let it be a negative experience in their lives. Children are extraordinarily good at adapting to any given situation they find themselves thrown into. It is part and parcel of their inbuilt survival mechanism. This is my daughters’ normal, a childhood that includes hospital visits for a sister who occasionally needs them to gopher lucozade to her hypo state, a childhood that includes medical paraphernalia which pierce and wound, a childhood that has taught them the endless reserves of inner strength they each posses. Strength which will see them through any trial or tribulation life may throw at them in the future. Confidence to never be silenced or patronised and to always know their own minds and respect others’ opinions and values. I will never regret or be sad that they learnt these lessons in their childhood.
To me, these are the marks of truly remarkable women. And I am so proud & privileged to be the mother of this band of girls.
As we approach St Valentine’s Day, I am hoping for an empty vase. I shall be giving my husband an empty vase too. Because we two are so, so lucky. So lucky that when our baby was diagnosed with T1D, we never needed to fear not being able to afford the insulin that is her elixir of life. Just because we were born in a country that provides free & equitable health care for all.
Other Mummies & Daddies are not this lucky. The chance of their birth & that of their child’s means the cost of insulin is far out of their reach. And as insulin isn’t an optional choice for someone diagnosed with T1D, it’s a necessity, the only option they have is to watch their child fade away, until their last breath. And then all that is left is sorrow.
Flowers die. Children shouldn’t. Which is why I shall rejoice in my empty vase knowing that a child will have the insulin he or she needs for the next year, because we have forgone the trappings of our privileged life.
For just £3, one child will have the insulin he or she needs for a month. £3. That’s how much a child’s life for one month costs. Go on. Do it. Give life & rejoice in the knowledge of the joy that spreads far and wide.
It has now been 12 years since the uninvited houseguest latched onto Pumplette & came to reside in our home. I’m so proud of the young woman she is fast becoming & the poise & kick butt attitude she has cultivated to cope with her shadow. Obviously it’s not always a harmonious liaison, but the way she always determines to come out fighting after a slump is testament to her own inner voice & the team she has been fortunate enough to have.
This post is dedicated to one member of that team in particular. Pumplette’s consultant. All too often a consultant is viewed as aloof, a little distant, maybe even above the touchy feely care that a good DSN will offer. But there in lies the rub. A DSN has time scheduled into their duties for the relationship building & support. A consultant may have many other roles to perform. In the UK they often have general paediatric consultancy duties to undertake, a broader speciality in endocrinology perhaps too, so should we be surprised if their time with their patient is somewhat perfunctory at times?
Pumplette’s consultant has been with us since day 1 of diagnosis. This may not seem remarkable until you know that Pumplette was diagnosed on a Sunday. The consultant on call in A&E that day rang Dr C, (who wasn’t on call & was enjoying a weekend with her family), for advise on how best to meet Pumplette’s infant needs. Not only did Dr C answer the call, and give advise that undoubtedly prevented the most severe of consequences of DKA, but she set out from her home, quite some distance from the hospital, just to make sure she hadn’t missed anything & that the baby was OK.
Which is how our first meeting with Dr C came to pass. Me, frightened, stood at the cot side of a barely conscious Pumplette, Dr C arriving with a reassuring air of confidence. It’s a fine line to walk, that one. Where does confidence end & arrogance begin? But that day, in that moment, when I needed confidence & reassurance that the team assembling around us could do this, that is exactly what she gave me. And I will be forever grateful to her for making what felt like a hopeless situation, bearable. Actually, she gave me more than that. She gave me hope. Hope that this wouldn’t be as horrific as my overactive imagination was catastrophising. Also reassurance that we wouldn’t have to go this alone.
For the first month, Dr C saw us weekly. She was very keen to let us know she wasn’t going to rush us all away from the reassurance & comfort these weekly consultations provided. Indeed, it was myself & my husband who were the first ones to ask whether we could have a little longer between meetings. Our requests were always respected, as was, crucially, our knowledge & understanding of Pumplette’s T1. From the very first meeting, Dr C told us she had only had experience, when a registrar, of one other baby with T1 at that point, and was very clear this would be a collaborative learning process. We’d all be learning on the job, as it were, but that our input would be crucial & valuable to her learning experience. How lucky were we that we had a consultant with oodles of humanity ready to accompany us on the journey (yes, I’m going there with the J word!) that lay ahead of not just us as her parents, but Pumplette too.?
Which is exactly how those early years played out. From us simultaneously coming to the table about the suitability of an insulin pump for Pumplette a few months after diagnosis, to the way Dr C has skilfully crafted our consultations, always ensuring Pumplette is front & centre of all we do. For now that she is 12, seemlessly & subtly, Dr C now only addresses Pumplette in these consultations. I am there to observe & occasionally offer clarification, but it is a privilege for me to watch this very special relationship & bond blossom. For Dr C recognises just how important the removal of Pumplette’s braces was to her in the last meeting. And a lot of their chatter is about Pumplette’s life & day to day shinanigins. Because that is where the trust is built. Dr C invests in Pumplette & as a result, Pumplette responds with warmth & openness.
These two, patient & consultant, have taught each other (& me), many, many valuable lessons through the past dozen years. Dr C never makes Pumpletts’s HbA1c the focus of the meetings. She never lays any guilt or worry at Pumplette’s door. And she has been a skilful clinician in letting us as a family take the lead in various medical decisions. Whether it was all of us learning together about insulin pump therapy, her gracious listening to & acting upon, my request for a pump that wasn’t offered by the clinic when Pumplette turned 4, to her unending tolerance when we colluded & “went rogue” seeking cgm therapy for Pumplette three years ago. Despite her misgivings, she had the grace to “wait & see” & when she could see the positive effect it was having on Pumplette’s entire being (not just glycemic management) she made a case for funding cgms in her clinic. Not everybody is open minded enough to admit they were wrong about something at first, but Dr C isn’t everybody.
Dr C is a remarkable physician who has given, first me, & now Pumplette, confidence. Confidence in the inherent capabilities that lie within to deal with whatever the lifetime of T1D management throws at Pumplette. And that is the mark of an exceptional consultant. And we are extraordinarily lucky & proud to have her on our team!
I shall start by wishing you a happy new year! The lass has changed her lancet for the year, and I have already failed to adhere to each goal I’d like to achieve, so its all looking like situation normal for these cave dwellers! I sincerely hope that your years have all started splendidly and will continue in the same vain!
This post is for all those newly diagnosed, and their families, as you stand poised on the edge of this brand new world you may have previously known nothing about. You may not want to look about you yet. Keeping your eyes fixed on one point and learning to balance here may well be all you can currently contemplate. And that is OK. Because just by doing that, you’re already being everything you need to be or your child needs you to be.
For the majority of us, propulsion into this world comes suddenly and unexpectedly. Even those who have lived around others with T1D may find this utterly unexpected and more shocking than a shot from a taser. We may arrive in this new terrain with what we think is a smattering of the language spoken here. An understanding of the laws of this land, picked out in bite sized chunks, from newspaper articles and village folk law. Upon arrival, we find this knowledge about as useful as adopting a french accent to our native tongue whilst in France. And some of the pieces of information we’ve committed to memory are downright petrifying. We play the word association game in our heads and link the word diabetes with a whole host of nightmare scenarios.
There we stand, shaking, wide eyed and full of trepidation about what the next minutes and hours will bring. At this stage thinking about the next day is a struggle. And yet the next day arrives. And with that arrival, one finds that one has already picked up a little of the language. And so thinking about the rest of that day is possible. And maybe tomorrow. Before we know it, the first week has passed. Still unsure as to how you are standing there, you’re there all the same. Because all we can do when our child receives this diagnosis is muddle through. We learn on the hoof and, similar to all other aspects of parenting, there are no rules and so we cobble together a workable strategy. The language starts to come to us more readily. We stumble over words less. Gain more confidence. And learn to trust our judgements & that of our child’s.
For me realising that, as in parenthood, there is no definitive manual for managing T1D, was rather liberating. Understanding that there were no hard and fast rules, that the management of T1D was just that, managing – sometimes proactive and sometimes reactive, – it became easier to tolerate this uninvited house guest. And that in turn meant it became easier to parent our daughter equitably with her siblings. To install a confidence & to strengthen her courage. Pumplette has been loved & nurtured to become the confident, no nonsense, hilarious, bright & engaging bundle she is today, not in anyway deferent to her diagnosis. She loves her life & lives it to the full. I want this post to be reassuring. That bumbling along and carving out a way that everyone finds tolerable is exactly what is needed in those first few days, weeks and months. Especially when everyone is dealing with a tsunami of emotions.
As a parent of child diagnosed with T1D, it is natural to want to be able to fix everything for your CWD. As a parent of siblings to a CWD it is also perfectly understandable that one will feel anxious about the prospect of them too developing T1D. Parents seem to effortlessly leap to the armageddon scenarios. I know I wondered how many times Pumplette would be hospitalised due to her T1D throughout her childhood as I sat next to her hospital cot at diagnosis. I feared her childhood would be spent in a seemingly endless procession back and forth from the hospital with countless admissions. However, at time of press, apart from scheduled clinic appointments, Pumplette hasn’t yet been hospitalised since diagnosis because of T1D. She’s had more encounters with the A&E staff than is strictly necessary, but those have all been as a result of childhood folly and not T1D. If I’m perfectly honest, I have made more trips to the A&E department with my clumsy firstborn than with the other two combined! So that was another fear surrounding Pumplette’s early childhood that was unfounded.
Pumplette becoming acquainted with gas & air after an altercation with a fairground ride!
The thing with parenthood is, you can’t pack up when it gets tricky. You don’t have the option of opting out. You just somehow manage. And every day you manage, life becomes a tiny, almost imperceivable bit less daunting. I promise all of you who find yourselves thrown into this strange world, you will see beauty in things again, you will dance again, and you will find yourself throwing your head back and laughing heartily again. And hopefully, it’ll happen sooner than you expect, and will undoubtedly take you by surprise. But thats ok. Because you can all handle surprises now. It’s all in a day’s work in the land where T1D dwells!
For World Diabetes Day this year I thought I’d approach the blog slightly differently. I have always been unendingly grateful that the pace of technological progress since Pumplette’s diagnosis has, when looked at in the context of a timeline since the discovery of insulin in the 1920s, been at a hugely accelerated rate. Dreaming of having a window about Pumplette’s person when she was 9 months old which would display her blood glucose levels became a reality within 9 years for her. The insulin pump she uses contains cutting edge precision and technology that allow her to accurately and reliably deliver identical amounts of insulin or vary them depending upon her needs. All this sophisticated tech is a world away from the regime my grandmother, Pumplette’s great grandmother, was given when she was diagnosed shortly after the birth of her only child, my father. To celebrate the world we live in today, and for me to pause and be grateful for the technology we rely upon to manage Pumplette’s T1, I asked my father whether he would mind writing about what he remembers of his mother’s regime and the 21 years she lived after her diagnosis. Below are his memories.
Diabetes in the olden days!
“I was born in 1943 and was apparently a very fretful and irritable baby, refusing to breast feed and driving my parents to distraction. No doubt there were baby milk products on the market then, but not to the varied extent available today. It was discovered, presumably by our excellent village doctor, that my mother had become diabetic and that excess sugar in her milk was the cause of my refusal to feed.
The level of sophistication in today’s treatments is a world away from that which obtained in the late 1940s and the public awareness of the condition was very limited. Children always accept as normal the world into which they are born and on occasion my mother would be unwell and I would be asked to give her sugar water and fetch the doctor, who fortunately lived just up the road from our house. On one occasion I returned from primary school to find her crawling in the garden covered in blood, having fallen into the blackberry bushes in the garden after an attack. Such episodes were usually followed by a spell in hospital to balance her blood sugars. She would return laden with vials of different strength insulins and a fresh set of instructions and a new syringe. Daily treatment was self-administered by injection into the thigh area. Syringes were not of the disposable type nor, I think, were the needles single use ones. Amid an all-pervading smell of surgical spirit, Mother would assemble her injection equipment, which consisted of a plunger, barrel body and needle of alarming proportions and then carefully draw off the prescribed insulin amounts from small vials with a pierceable rubber top until the required amount was loaded. More surgical spirit was then applied to the thigh area and the seemingly vast amount of fluid injected into her leg. Occasionally both thighs would be so covered in bruises that it was almost impossible to find and injectable site and my father or I would attempt to administer to her arms, usually with limited success. I believe Mother had been shown how to inject by practising on oranges whilst in hospital.
In spite of occasional comatose episodes, she managed her condition with commendable lack of drama and it is a tribute to both my parents that I was never plagued by fears that she might be at imminent risk of death. Looking back, we were also very fortunate to be living in a small village with an excellent old-fashioned doctor who was quite prepared to shuffle down the road at 2am with an overcoat covering his pyjamas to treat a diabetic coma. We had no telephone in those days : just as well as dialling 111 and the attendant rigmarole of questions nowadays would have done little to avert the occasional crises.”
I remain grateful for the vast leaps of knowledge which have occurred since insulin was first discovered. Whilst not yet that ever elusive cure, which is clearly only 10 years away, the treatments Pumplette uses now are nothing short of science fiction when I read about my grandmother’s regime & all she had to manage. We, as a family, are also incredibly lucky to live in a country where the access to this cutting edge treatment is free. So today, as always, I shall pause to be grateful, and continue to support Spare A Rose campaign, which provides insulin for those who would otherwise go without.
Because, a little over seventy years ago, people no longer died at or around diagnosis. I strongly feel that should be the case wherever you are on the planet today too! #insulin4all
Happy World Diabetes Day!!
As the plane taxied through the Swedish rain toward the airport, I switched my phone from airplane mode back to ‘fully operational, I’m very important, everyone will need to contact me immediately’ mode. Of course, I didn’t really assume anyone would need to contact me – all my girls would be in school by that time & my husband would be busy doing grown up work! I just hoped there may have been a text from at least one child telling me she actually missed my maniac ways which form the wallpaper to their morning routines. But alas. My phone remained resolutely silent, underscoring the fact that my daughters are all growing up and don’t really need my hand at that tiller at all times.
I disembarked and wandered through the airport toward customs. It was then my phone went nuts. It exploded with half a dozen messages (I’m not very popular. 6 messages constitutes an explosion of popularity in my life!). Wondering who could possibly want to seek my counsel I fished my phone out of my pocket and peered at the screen, ignoring all the “No mobile phones” signs that littered my path in both English and Swedish. All the messages were from Big and Pumplette. Immediately my heart sank as I began to run through the list of possible armageddon scenarios that could have befallen my daughters since my departure some 12 hours earlier. I took a deep breath and opened the first message.
“Pumplette’s pump isn’t working. Grandpa replaced the battery but she thinks water has got under the screen and she can’t see anything. Any suggestions?”
I checked the time of the message. Sent precisely ten minutes after take off for a two hour flight…..
I skimmed the next message.
“Mama – my pump is really hot. I thought perhaps I should take the battery out for a bit to let it cool down. I didn’t want to worry Grandma & Grandpa. But I knew you’d know what to do!”
I love my daughter’s faith in my ability to fix stuff. Its remarkable that a child who learnt as a baby that her mother can’t actually make everything better, still labours under the unwavering belief that there is nothing I cannot do when it comes to supporting her with her T1 management.
There were other messages asking me whether I’d got the initial messages, ever closer in time, and so it was a rather bewildered understudy who presented herself to the Swedish customs official. My mind was cantering through how I may be able to remotely fix this problematic pump. Fortunately the customs official recognised the look of harassed mother and didn’t mistake it for ‘dodgy geezer’ and detain me. By the time I reached the railway platform at Stockholm airport, I had swung my Heath Robinson plan into action.
Throwing myself on the mercy and kindness of the most amazing friend in the village where we live, I arranged for Pumplette to be collected from school so that she could go home and pick up our back up plan. I calculated that by the time she had been collected from school, picked up the back up, and logged into our house wifi, I should be able to be at the conference venue, accessing wifi and Diasend information so that the correct basals could be programmed into the pump and normal service could be resumed. Messages from Pumplette via my husband (also working away, but doing a proper job) were that her levels were hovering around the 11mmol (198) mark so I guessed we had just the right amount of time to play with before levels really began to clatter away from us.
By the time I reached the conference centre, looking notably older, haggard & flustered, Pumplette was messaging me, impatient to complete the task of programming basal rates into the pump so she could get back to the important business of being 12. Logging onto the free wifi in record time – how I LOVE modern technology – there was Pumplette, bursting forth onto my screen filling every last corner with her excitement at the unusual turn her day had taken!
Forgetting passwords is something of a past time for me & so whilst I fumbled about for a password renewal from Diasend I handed her to my travelling companion who had in no small part helped me to remain calm(ish). Grumpy is an old friend of Pumplette’s – both are Animas Heroes in the UK and they very much enjoy any opportunity to wind the other up. So whilst I was trying to reset passwords, I could hear the pair of them mucking about and generally berating me for being a freak with an operational pancreas. Grumpy was useful though, as he also talked Pumplette through setting up her pump to receive her Dexcom transmitter. (I am so very pleased that I took a photograph of that transmitter number before I changed it last month!)
With CGM sensor start up commenced, I talked her through each basal profile on the pump & with more than a little distraction from our dog and my friends’ three hounds, we eventually had a profile set that seemed to match the 24hr totals on my computer screen!! Much grovelling and appreciation to my friend, I then bid farewell to young Pumplette who was then utterly spoiled by my friend as she made her lunch before returning her to school for the remainder of the day. And her bgs never rose any higher than 13. (That is 234 for the bilingual amongst you!)
More than anything else, this episode taught me how utterly supported Pumplette is. How many people look out for her (and me in my incompetence) and will always be willing to put themselves out to help smooth the waters she sails. I hope she will always remember this when she finds her load heavy. For she is surrounded by an amazing network who will always be there to prop her up and even carry her for a while should she need it. Although I hope she won’t ever feel overwhelmed, I do hope she realises how many people adore her and want to walk with her, laugh with her and share her journey. Because the people she has filled her life with and who have been generous enough to befriend me, are of sterling quality.
As for me? As I watched the last Pumplette pixel vanish, I looked up to find my most spectacular friend Renza approaching, armed with the most enormous & well timed hug I have ever received. And just like that, I was flanked by two of the most supportive & generous members of the #doc who whisked me off & plyed me with tea, food & most importantly, made me forget the stress of the previous couple of hours & reminded me that my lass will be just fine without me!
On 17th September 2015 the fourth annual International DOC Exchange conference convened with some familiar faces and some new ones. I have blogged about this event before here and here. Around the table there were voices from the online community, industry and a couple of silent voices – attendees who didn’t blog or tweet and who were unfamiliar with the Diabetes Online Community.
We were all brought together by Animas, a Johnson & Johnson company, to discuss various topics, share ideas, offer support and to learn about some returning participants’ projects over the past year. I cannot emphasise enough how much every attendee there appreciates the support from Animas for such an exchange. The fact that a major company recognises the importance of joining together our voices in a room without pushing their own agenda or products is a rare and precious thing. Having the opportunity to discuss lots of common concerns face to face with the luxury of time to complete dialogue is something that I personally find very special.
Kerri Sparling had, once again, compiled a conference agenda that challenged and gave space for dynamic and passionate discussion. And so the meeting began, after an excellent report from Animas about the CHOICE study and a fabulous artistic icebreaker (who knew we had so many talented artists around the table?!), with a difficult starter topic. As a group, we have, in previous exchanges, touched upon the importance of supporting every voice within the online community, not just the voice of people with T1 diabetes. We know the numbers of people with T2 outstrip those with T1, but in general, these people seem to be largely absent from the online community. Important questions were posed, not least should we be discussing how to bring T2 voices to the table without a T2 voice being present? In the UK there has been a very successful “No conversation about me, without me” campaign & this was at the forefront of our minds during the discussion, alongside the stigma that all members of the community face. During our discussions we tried to identify common ground and challenges faced by people with T1 and T2, and we all felt there would be value in having two parallel symposia which could have an overlap where we all joined together to discuss common ground and challenges. We concluded that it would be ignorant of us all to suppose the challenges of T2 were always comparable to those of T1 and we hope there may be an environment where the T2 voices can be united in a similar way to the T1 exchange. Watch this space!
Hearing from members of the group about their different projects and achievements is always an inspirational part of this exchange – and non more so this year than hearing from Daniela about Portale Diabete – a community which she set up over a decade ago, continues to thrive thanks to her vision and passion to support every person whos lives are touched by diabetes. Together with Francesca, they have made Portale Diabete an inclusive community which joins voices and supports everyone.
An important project that I have supported for a little while now is IDF’s Life for a Child. Every Valentine’s Day, people are encouraged to send just eleven red roses and donate the cost of the twelfth to the Spare a Rose project. By donating the cost of just a single rose (£3 in the UK), one can cover the cost of insulin for one child in the developing world for one month. Its that simple. For the cost of a cup of coffee, a child can live, for a month. I love that its that easy! It is such a tiny amount, with the best possible impact, that I decided to forgo a coffee or two a month and set up a direct debit so I know every month, there is another child who is alive because they now have access to insulin.
There were discussions about the psychosocial impact of T1 upon not only the person with T1 but also those around them who care for them (there were a couple of us non T1 parents at the table) and the group compared experiences from around the world. The results were very mixed – it became clear that this is still an area of care where access not only varies wildly from country to country but even within borders. Without a cohesive and comprehensive approach, too many people are being let down and not receiving help and support at point of need. We resolved to continue the conversation virtually and ensure we share the good practises so that care may be improved across the board.
The second day started as early as the first and opened with the topic of burnout. Not solely restricted to diabetes burnout here, but looking more at social media burnout too. Many of the people around the table work within the diabetes industry, whether as a patient advocate, in the charity sector, or running established online organisations and groups. Some of us at the table have forgone a real live social life in order to engage in the online community and offer support to whoever asks. Burnout is a big deal in each of these groups. How much of ourselves do we share? How much do we keep to ourselves? How do we protect our personal information and that of the people we love? The discussion served as a reminder just how much flack can be hurled by faceless online accounts but it wasn’t all negative. The support we as a group can provide to one another and the real difference that the work of everyone there has made to people’s lives across the planet cannot be overestimated. Those gathered around the table are passionate people motivated only by making a positive impact to people with diabetes, children with diabetes, their carers, spouses and friends. Our discussion helped to exorcise our negative experiences and reinforce the value of the online advocacy we all strive to achieve.
Finally there was also possibly one of the most important topics raised of the entire agenda. “How patients can build a case for industry & how industry can build a case for advocacy”. As patients, the group completely understands that industries have a bottom financial line. We are not seeking to rewrite capitalism in any way, but there was a very strong desire for patients to be at the centre of anything industry is trying to achieve. A wonderful quote from the room was “Ask the patient what will help, not how much money they will spend.” As PWDs and carers of CWDs, the question was posed “What do we want from industry?” with the follow up questions being “What can they learn from us?” & “How can the diabetes community, as a whole, improve through these relationships?”. A thoughtful discussion ensued where empathy was discussed – the need for more from both sides, and the fact that this is a relationship which both sides are heavily invested in and both sides need to be strong and robust. As a community, without industry continuing to invest and develop improved ways to manage the rollercoaster that is Type 1 diabetes, then the community would feel abandoned and forgotten. As if insulin really were a cure for T1. Likewise, industry needs the community to engage so it can channel its resources into tailored and relevant developments that are truly what is desired by the community, not just ones that will turn the biggest profit.
The overwhelming feeling in the room was one of warmth towards Animas for bringing us together once more, so that we can continue the dialogue that has been ongoing in this forum now for 4 years. That Animas gives us space to converse and work together without a desire to force their own agenda is something every attendee around the table values most highly. That really does play into the sentiment that they truly want to support us, not just turn a profit from us.
I truly hope I will be invited to attend the Fifth Exchange in Munich next year and continue to work with this truly remarkable group of people I’m honoured to call my friends.
I have spent the last six weeks in a glorious timetable free state with the girls. Although the long sunny summer days didn’t make as many appearances as we’d have liked, the lack of clock watching & abundance of bumbling & dance routines choreographed has been utter bliss! The girls have hunted sheep (see below), swum miles, camped & socialised in abundance & are all the happier for it!
Those six weeks have flown by & today will be spent in a flurry of “I can’t find…..” & “this doesn’t fit!” as I attempt to coordinate three sets of separate school kits before the start of term tomorrow.
I have, somehow, managed to remember to order extra medical supplies so the school’s boxes will be complete with the necessary spares. An accomplishment of which I am rather proud!
This year I have added an additional piece to Pumplette’s school kit. During the summer term Pumplette was somewhat fed up with the increase in supply (temporary) teachers at the helm in her lessons. These teachers would quiz her if she needed to check her bgs in class at a time when she would really rather not have any spotlight shone on her. When hypo, Pumplette wants minimal attention & certainly no fuss whatsoever. The lack of understanding or information given to these supply teachers was resulting in many encounters which left Pumplette feel very uneasy.
Which is why I came up with the idea of informative postcards. On one side there is a photo of Pumplette with her name on the bottom. The reverse side gives any teacher or adult in a position of authority all the necessary bullet points they need to know at that moment in time. Pumplette loves them. They’ll give her a shorthand to communicate her needs to a teacher or coach, without the need for a protracted discussion on the topic.