Tips and Tricks – Let’s round off the week by sharing our best diabetes tips and diabetes tricks. From how you organise supplies to how you manage gear on the go/holiday (beach, skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes proctices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)
I’m far too shambolic and haphazard to be able to offer any pearls of wisdom around organisation of prescriptions and managing supplies. There have been more than a few moments when I have realised somewhat late in the day that supplies are ludicrously low and that phone call to the pump company to replenish stocks should ideally have been made a month before the palpitation fuelled conversation actually occurred.
That said, and this will be very UK centric, one of the few things I do try to share with newly diagnosed families when they first start their journey in this land, is that the best thing to do with a day upon discharge from hospital is to make two appointments. The first with their GP, who will be issuing their repeat prescriptions. A face to face meeting so that you both understand the importance of these items and that the initial requests for quantities will be likely to change, is hugely beneficial. The GP needs to accommodate these requests with minimal or no resistance. If they understand you will not abuse the amounts of supplies on a script, they will respect any requests for a change in amounts.
The second appointment is with a pharmacist who is local and convenient for you to visit. Taking time to chat with them and build up a relationship with a good pharmacist will pay dividends. They will always ensure they have at least one of each of your regularly needed items in stock. This matters. Because there will be days when a repeat prescription has gone AWOL or youve simply forgotten to reorder because you were sure there was another bottle of insulin in the back of the fridge, lurking behind the mustard and other condiments. Upon finding its an empty box (true story), and in desperate need of more insulin, your pharmacist will be happy to let you have a bottle without a fuss and if you’re lucky, they’ll even stick in the request for the repeat prescription! Never underestimate the important role a good pharmacist can play in supporting you with the management of diabetes. As a customer, you are worth a lot of money to them, and they will invest time with you. If you need advise on how different medications may interact with one another, they’re probably the most clued up member of your health team to advise on such vagaries. They know medicine and crucially they know many patients taking a myriad of medicines. Theirs is a vast font of knowledge that is all too often overlooked.
Beyond these two tips, I would add that there is no such thing as a text book case of diabetes. This is a condition that resolutely refuses to adhere to any of the theories written in esteemed medical tomes. The only predictable thing about diabetes is its ability to be wildly unpredictable. But that is ok. Because you’ve got this. And if you accept that it doesn’t play pretty, it becomes that tiny bit less infuriating. Because then you have the upper hand. You know it doesn’t play fair and that there will just be times when it doesn’t make any sense at all. But rather than fret about what happened, you’ll be able to reason its not played fair and stick the emotion and stress about it in the f*ck it bucket. Its done and can’t be changed. But you can recharge for the next challenge. Which you will do. And you’ll face it with amazing aplomb. Because thats what people who live with diabetes do. And I think you’re all utterly awesome for doing it!
Thank you so much to Karen for such an enjoyable week – I’ve still got a tonne of reading to catch up on, but happily I have a quiet weekend with the girls and I’m looking forward to catching up on every post from the week.
Day 4 – The Healthcare Experience – Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it with all!
I have written here before how we always make clinic days a special event. I still stand by this and we both look forward to this special day together. So today I want to take a look at how care is delivered in our bit of the planet.
Living in the UK, we are unbelievably fortunate to be cared for by a system that will meet all the medical needs of my daughter with absolutely no cost to our household other than the taxes we already pay. This is a monumental privilege in my mind and something I and my family have never taken for granted. That we are lucky enough to live within striking distance of one of the largest paediatric hospitals outside of London is another massive bonus for Pumplette’s care. The dynamic and outward looking ethos within the teaching hospital attracts talent and bright young minds, eager to learn and share knowledge. And because of the vagaries and the way the NHS is set up and run, I appreciate this is not the same for everyone. Which sucks. Because some families, young people and adults with T1 are appallingly served by their local NHS services. There are now options for people to move care, but this is always dependent upon the patient having the wherewithal and funds to finance such a change.
So, with great privilege comes great responsibility. We are lucky to have free, on the whole excellent healthcare in the UK. Being cared for, our entire lives, by a health service that does not charge us, has made us a complacent nation. As a nation, we are not as proactive as we could be in keeping ourselves well. For we all know, whether consciously or subconsciously, there is a safety net that will pick up our pieces and stick them back together again. The result of this can sometimes be that we expect HCPs to be constantly nannying us and prompting us and reminding us of our personal responsibilities. And this is possibly amplified when you’re caring for or when you have a long term health condition. Confidence needs to be built to empower the “frequent flyer”. Just as I do not expect the garage from which I purchase my car to call me and make an appointment to ensure I have topped up the washer fluid in my vehicle, why should I expect the team that oversees my daughter’s care to constantly contact us to see whether she is having problems with her feet/eyes/etc? They check these once a year, at her MOT, and just as the garage will check my washer fluid in my car at this time, they do not have an obligation to ring and prompt me to check and fill as and when needed the remainder of the year. I have the skills to do this. Whether or not I choose to reflects my own laziness or level of proactivity at any given time. And so, for the remainder of the year, Pumplette and myself will keep an eye on her feet. Looking at them from time to time and seeing whether there may be any potential issues. This builds good habits up for Pumplette and reminds her of her own responsibility necessary for keeping herself well, happy and healthy. Likewise with her eyes, we make appointments independently of the clinic. And when, last year, Pumplette had issues with her kidneys, it was I who sought and coordinated additional care and check ups for her.
Now I know I am in a privileged position in all of this. I have the confidence and knowledge to know that this is possible. But I did have to learn how to do this. Pumplette’s team have always been superb at championing our expertise in her management and this is what we love about them. We are encouraged to bring our agenda to the team, and seek out additional knowledge. This is when healthcare is at its strongest. Crowd sourcing knowledge & sharing with all the attendees at clinic leads to that dynamic, vibrant and forward looking clinic that then delivers the very highest quality of care. I just don’t want Pumplette to forget her responsibilities in all of this. She has to be the driving force of that care. Her HCPs don’t know what they don’t know about how she is feeling. In order for her to get the best out of the people charged with supporting her on this road, she must drive carefully and flag any issues. And in response, I would expect her health care team to act as her navigator & provide or signpost her to the care that she seeks.
In summary, if you’re a frequent flyer, have confidence in your knowledge & ability to ask for the support & services you need. And if you’re an hcp caring for a frequent flyer, instil that confidence within those who look to you for guidance. I promise the results will be most rewarding for all parties.
Diabetes Blog Week continues apace. I’ve loved reading all the different posts so far this week. A full roundup of participants can be found here & the I remain thankful to Karen of Bitter Sweet Diabetes without who’s idea & organisation this wouldn’t happen.
Today’s prompt is all about the language we use around diabetes & whther or not this matters.
My entire productive working adult life has been spent with beings who are just beginning to acquire a language. A fair proportion of my teaching work had to be executed with minimal linguistic input as often the main point of an exercise would be to master a physical skill that would improve their dexterity and enable them to garner more independence in their lives. If I had cluttered this experience with too much language, their focus would have strayed from the task in hand and instead alighted upon the words I spoke and how they interpreted them.
This demonstrates how important language is. It shapes our confidence and how we feel about ourselves in our formative years and beyond. A child who has only heard kind, encouraging and loving words in their life will likely be happy and comfortable in their own skin. Similarly, a child who is only exposed to negative language will very clearly show just how those words can crush a spirit and create a child full of doubt and sadness who may choose a myriad of ways to display this unhappiness with their own skin. When teaching, my job as a directress was to build up the self reliance of the child. We didn’t indulge children with empty praise. Small children are very astute and quickly learn whether there is a sincerity to the words you’re using to describe the latest master piece they are dripping all over your lap. Understanding that the importance of many things a small child does is in the doing, and not the end product, helps you support them. They often have no interest in the painting once it is finished. Their joy, learning and satisfaction came from feeling the paint on the paper. How the bristles of the brush fanned out across the page the more pressure they applied. The way the colours could bleed into one another. Seeing what colour the paint would become if they added yet another colour to the already sodden painting. (Brown. Always brown. Always.) On the occasions a piece of work was presented to me, I would study it with interest and comment that they must be very proud of their work. These words help the child to look to themselves to see whether they are satisfied with their efforts. Not to perpetually seek approval from those around them. This self reliance is a wonderful trait to behold, and to this day I am still trying my hardest to master this skill.
For the power of language, and how that can permeate every inch of one’s being, should never be underestimated. I feel a tremendous responsibility when I write and talk about diabetes. I am very careful about the language I use. Very aware that I trespass upon this space. I know a little about diabetes and yet I know nothing of having diabetes. I understand that for some, the semantics and language used in the diabetes sphere is utterly trivial. For others, it is of the upmost importance. Often, those who have experienced the greatest wrongs are the ones for whom the language matters the most. For they carry the scars of language. Invisible to the outside world, and yet there for all to see. A throw away comment from a friend, a clinical phrase from an hcp, a sensational soundbite in the media, they all contribute to the additional mental element of managing diabetes. And some are able to shrug this off with ease. Others are not. This doesn’t mean one is right and one is wrong. It doesn’t make one stronger and the other weak. Just as building a child’s self reliance and confidence isn’t a one stop shop. It takes time and consistency.
So, as my starting point, I always use Diabetes Australia Language Position Statement – an excellent language resource to act as my guide. Its where I direct any journalist with whom I happen to cross swords with too. For if language doesn’t matter to you, hoorah! (Indeed, Pumplette will invariably refer to being “T1 diabetic”. However I would never describe her as such as I see her as so much more. But for her, telling you she is diabetic doesn’t equate to you knowing everything about her or that being the sum total of her worth. For her it is a factual transaction. I strongly suspect this feeling may change as she grows older and becomes a semantics fiend.) But, if language does matter, and it cuts to the core to feel you’re being judged solely on the basis of one diagnosis, then it really doesn’t hurt the rest of us to step up and stop that ache. It costs nothing, but the impact will be far reaching and beautiful.
The ambition & confidence of self reliance
Day 2 prompt: The Other Half of Diabetes – We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?
When Pumplette was diagnosed, the mental component of her condition really didn’t register on my radar. As I tried to keep our little family afloat, mastering all the medical and physical elements of her management, her future mental well being and health, I’m ashamed to say, really didn’t occur to me. Naivety and ignorance were in abundance as I listened to, and willingly accepted, other people’s kind intentions where they assured me she was lucky she would never remember any different, and so would always be accepting of her diagnosis.
We were all wrong. And it took me far too long to pick up on the sadness she felt.
Thankfully, through the generosity of many adult friends who happen to have T1, I was able to change my assumptions and understanding of the trials and tribulations that face my second born daughter specifically. Having the knowledge that there will be times when she will feel fried, fed up and utterly exhausted by the relentlessness that is T1, is actually very liberating when you’re caring for a child who is experiencing these things. Having the ability to help your child name how they are feeling, know why they are feeling it, and crucially being able to reassure them that these feelings are transient and WILL pass is incredibly empowering. It helps strengthen their character and makes them emotionally intelligent, which is something I feel is vital for all my daughters, but especially so for Pumplette. For she needs to come to the table on the days she doesn’t really feel like it, with the underpinning knowledge that this exhaustion and burn out will not be forever. It will not determine how or who she is in life. It will pass. And she will be more fierce and alive for having conquered this. Every. Single. Time.
This works for our family. Naming emotions, owning them, and knowing they will pass, has been crucial for the mental health of all my children. The pressures modern life imposes upon these young people today are a world away from the experiences I had growing up as a child. I have found that when each of them have experienced difficulties within their worlds, being able to help them identify their feelings was always the very thing that would lead to their liberation and prevent them from feeling overwhelmed by the enormity of those emotions.
But far and away the most effective treatment all us girls have found to any emotions which make us sad, is a large slice of homemade chocolate cake with a pot of tea chaser. There’s nothing that can’t be made better with that!
It’s Diabetes Blog Week, that time of year when I try to read every post on every blog published in the name of Diabetes blog week. Ultimately this means a week of no sleep and copious amounts of coffee to keep one functioning. However, I always remain grateful to the awesome Karen Graffeo of Bittersweet diabetes blog for this week, and her commitment to organising this rabble together once a year.
The brief for day one is: “Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)”
I’ve been blogging for a little while now, and my motivation was really very simple. I didn’t want another parent feeling as alone and frightened as we did at times during those early days. When Pumplette was diagnosed with T1D, I couldn’t find one single person who was either going through, or had recently been through, the things we as a family were experiencing. Any parental support groups we attended were very tricky. No one there had experience of toddlers with T1, let alone babies. I already felt very alienated from my peers with young children, and coming to a group where other parents spoke the same medical language should have made me feel less alone. Sadly, it did the opposite. It was in those meetings that I realised just how unusual our familial situation was, and there didn’t seem to be any stories of hope for the full childhood that lay ahead of her. And so we stopped attending these groups too. It took until Pumplette was almost 5 before we started to meet other children with T1 of a similar age to her. That isolation felt very suffocating at times. I had no point of reference to see whether we were doing ok, other than her team of health care professionals. They were great, and endlessly encouraging, but it wasn’t the same as the recognition that comes from “Me too!”.
And now, as we stand here 12 years post diagnosis, so many things have changed. The online world has exploded in that time and with just a few clicks of a mouse, one is able to find someone else to identify with readily. Organisations are much better prepared for all ages of diagnosis (although I do acknowledge this isn’t perfect, believe me, its evolving in a positive way all the time), and from the sheer numbers game, and the amount of parents of tiny T1s I know personally, there are others around to share your experiences with. They will champion you and your triumphs and be there to hold your hand at 3am when everything feels like its tumbling down around you.
Of course the messages of early diagnosis are important too – it is my dearest wish that no other parent or family member should ever see their loved one critically poorly at point of diagnosis – but this takes persistence and tenacity and it will not be solved overnight.
Above all though, I like to think the silly stories I regale you, dear reader, with in this blog, will give you enormous optimism about the future that lies ahead of your newly diagnosed child, or loved one, or even you.
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!