“When ‘I’ is replaced by ‘we’…
…even Illness becomes Wellness”. I came across this quote from Malcom X and find it rather fitting for this blog post. This week is Diabetes Awareness Week in the UK and today I wish to share with you a brief and personal view on the clinical team who treat our son Noah. I have discussed previously some of the challenges Kasper and I faced during our early training. I want to emphasize again that without these professionals our child’s life expectancy would be much shorter and his daily physical struggle would be so much harder. When Noah was diagnosed, we didn’t realise how privileged we were to have access to this expert team. I have since learnt that even in research-intensive countries, like the US or the UK, access to similar resources coupled with high quality care varies substantially. It is for these reasons that shining a light on the magnificent work that takes place behind the scenes is, for me, a no-brainer.
Angels in disguise
Let me take you back to the day Noah was diagnosed in September 2015. We left the hospital carrying this new bomb shell, with the promise that someone was going to call us and tell us what to do next. Dr. Els van Straaten telephoned that evening; earlier that day Noah had received his inaugural boost of chemical insulin and she needed to advise us on getting Noah through his first night. The following day, puffy-eyed, bewildered and deeply confused, we arrived at the DiaBoss clinic located in OLVG West Hospital, Amsterdam, The Netherlands. The clinic quickly became our home from home. Over the next two weeks, Kasper and I underwent intensive training on the what, how, why etc. of treating a child with T1D. One of the first things Dr. Els van Straaten said to us that morning was ‘I may have worked with diabetic children for over 25 years but in 12 months time, YOU will be the experts in your son’s diabetes‘. That sounded totally alien to me at the time; I was struggling to understand the simple stuff like why we count carbohydrate units and not sugar units in food, or how many times a day he would need his blood tested, but I never forgot it. What she failed to mention, however, in that unforgettable moment, was how this metamorphosis from ‘ignorant to expert’ would only take place because of the incredible work, dedication, expertise and patience exhibited by herself and the team around her. We were not alone.
Meet Marion, Noah’s diabetes nurse. Marion is really special. Our daily/weekly contact always starts with Marion; never has her patience faltered nor was she too tired or too busy to extend her unyielding care to Noah. What many of us often forget, or underestimate, is the emotional trauma that a T1D child suffers following diagnosis. For some this lasts a few months and for others it takes years to overcome. We all remark on how small children are tougher than they look, and it is very true; but still they suffer deep trauma. Noah exhibited the impact of his trauma when he became selective mute at school and shut down completely in front of everyone, except his family, over an extended period of time. The reason I am telling you this is because he didn’t shut down for Marion. She had gained his trust like a family member, he knew he was safe with her, he knew she cared for and helped him. That, together with her exceptional experience, is why she is a true angle in disguise.
Taking control back
Kasper and I have been working with the clinical team at ‘DiaBoss’ (based on the concept of being the ‘boss’ of your own diabetes, and not the other way round) for almost two years now. From our perspective, they operate an unequivocally effective triage of priorities. Firstly, they have built a team of highly skilled pediatricians, nurses, dietitians, child psychologists and administrators; all specialised in treating T1D in young children and juveniles. In short, they are the ninjas when it comes to fighting diabetes. Included in this, is their fight to push the boundaries and further improve health insurance coverage for T1D treatment here in The Netherlands. Secondly, these ninjas not only work with the latest treatment techniques and technology, they also actively seek input from world class experts when new questions or puzzles arise. And thirdly, they bring a superhero level of PMA (positive mental attitude) in delivering tailor-made care; not only for the patient but for the whole family. They put the ‘we’ into everything they do so families like us and kids like Noah don’t feel so alone in the struggle to learn to live with this disease.
Side by side
I am always touched by the interminable enthusiasm the DiaBoss team extend when asked for help in non-clinical matters. They understand how extremely important the parent’s coaching role is in the child’s long-term health. This understanding lays the foundation for their support also within the child’s environment. When Noah started school, Marion visited his school, spoke to his teachers, provided them with information and further support when they needed it. That level of care and attention for one child is mind-blowing when you give it some deeper thought. How many visits must they make each week or month? And yet, these resource-intensive initiatives are exactly what guarantee The Netherlands can truly acknowledge they lead the way in juvenile T1D care.
Here is my list of highlights where I believe DiaBoss prove they turn adequate care into phenomenal care:
- They hug you when you cry; they completely understand how bewildered and terrified you feel. They are a clinical team who operate like human beings.
- The DiaBoss helpline is open 24 hours a day, 7 days a week; we can always speak to an on-call diabetes pediatrician who knows everything about our son’s specific case.
- A few months ago Noah got really sick: he had classic stomach bug symptoms. We had no idea he was suffering from his first diabetic ketoacidosis. His nurse, Marion, distinguished the difference over the telephone and made sure we got to the hospital on time.
- They never run out of patience when you accidentally get a correction bolus wrong, forget to change a cannula or misunderstand anything they tell you. Since I often converse in a foreign language with them, this happens to me frequently 🙂