The stage at the National Paediatric Diabetes Team Meeting
Hoist by my own petard
Last year Amy took part in Dr Partha Kar’s Q&A session at the Lilly National Paediatric Team Meeting in Birmingham. I didn’t think she’d be interested in doing it so I impressed on her how much of a privileged invite it was; how doing it would be good for her; how much more confident she would afterwards. Those words came back to haunt me when Dr Kar asked us again, but this time wanted us both on stage. Amy said, “Dad, it would be good for you, it’s a privilege to be asked” and so on. I sometimes hate that her memory is so good.
At 10:15 our chauffeur arrived and us whisked up to Birmingham where we met Rebecca (who has Type 1) and her partner Jack, both of whom were due on stage with us, not that Jack seemed to know. Partha called, he was running late, to prep us with the plan for the event. But first it was time for lunch and a lovely chat with Francesca Annan who’d popped out of the conference to come and see us, as she and I had been chatting online since last year’s event. After lunch we headed off to be mic’d up, bumping into Dr Fiona Campbell who thanked us for coming up to the conference.
Session One – Ask The Experts
The first session saw Partha ask a panel of experts and the audience of paediatric healthcare professionals about their patients transitioning to adult care but there was an imposter on stage, me. I was so nervous being on the stage in front of everyone, under the bright lights, that when it became my turn to introduce myself all I got out was ‘Hi, I’m Kev, I’m just a Dad, a Diabetes Dad’. A pretty crap intro but actually maybe it wasn’t, after all I had role as an expert I merely do my best to help Amy through her condition.
Partha asked the experts about the issues with adult care before coming to me to ask how I felt about what I’d just heard. “Horrified” I said, no-one seemed to have any faith in adult services in their own hospitals, let alone others. How could this be? Partha asked for a show of hands to confirm this and all hands remained down. Shocking.
I got carried away listening to the eloquent Doctor talk about how adult and paediatric care needs to work together to ease transition as he asked the experts what they would like to say to adult service. My mind was switching thoughts about whether to say ‘communicate way before transition’, ‘work jointly with paediatrics’ or something else. When my turn came I settled for “We’re staying in paediatrics, Amy will stay 14 forever”. It may seem a strange thing to say but it seems that as soon as kids transition to adult care everything they get now disappears and no paediatric team has faith in their adult team. Shocking, really shocking.
Session Two – Ask the Patients
With session one over I was joined on stage by Amy, Rebecca and Jack, all looking far more comfortable on the stage than myself, who at this point was gasping for a drink of water.
Partha discussed with the audience how the Portsmouth teams work together to ease transition for their youngsters, how they get all the young adults transitioning together and take them into one session whilst their parents go into a separate session.
First Partha asked us all how we felt about the care received and the response was favourable, it seemed we all thought the care we received was good on the whole, although it wasn’t all a bed of roses. It was interesting hearing Rebecca talk about the care she received and Jack talk about what it was like to be a partner of someone with Type 1.
Coping with transition was the next topic and Partha asked Amy if she felt she was ready for it. “Yes, I think so” replied Amy before I followed up to ask her if she felt she was educated enough – Diabetes-wise – to be left to her own devices. Although she felt she would be okay I pointed out that it was not the paediatric team that taught her those skills it was Jane and me, just like other parents do for their kids.
At one point on stage Partha joked about me being “SuperDad” which has since stuck when Amy feels the need to mock me about something. I must admit to prefer the nickname from last year “Sideshow Kev”.
It’s a wrap
Straight afterwards a relieved Amy and I headed off for a large piece of cake each and I made quick work of a post-stage beer.
We feel quite privileged to have been invited and we’d both do it again.
I’ve learned that answering questions in front of an audience is nervewracking but as no-one knows my story better than me there’s no need to be that nervous. However ad-libbing an introduction is not so easy.
Health care professionals are generally lovely people: from our chat with Francesca to our chat with Dr Campbell to our trip home with Partha, everyone made us feel so welcome, at ease and wanted.
I’m a big fan of disclosure so here goes.
We were paid nothing for this, we took no gifts, nothing.
Ah, well, apart from the beer (me only!), the cake, the lunch and being chauffeur driven there and back.
Lilly and Partha gave us something far more valuable though: the chance to tell our story and help the future of people like Amy when they transition. I’m very grateful for this opportunity.