12 years on – consult that!

  Pumplette at diagnosis

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! 

2 thoughts on “12 years on – consult that!

  1. Dr cowbe is also my daughters consultant. She was there on our day one nearly 5 years ago. Evie is now about to turn 12 too and dr crowne has supported us in getting a pump and a CGM thanks to Evies almost total hypo unawareness. I too am extremely grateful for the care she has given my daughter. Lovely to see someone recognising that quality of care.

  2. Gosh, how lucky that you happened upon her all those years ago. We were not so lucky in consultant, but we were lucky in the support we got from other parents going through the same, and because of them we now have a consultant who I think will do a very similar job for my girl (if he can gradually ease me out of the hotseat I can see he will turn his attention to her). Having that expert hand to hold, and gradual education is so essential to living well with this condition.

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