A date with the healthcare professionals at the Lilly conference

The stage at the National Paediatric Diabetes Team Meeting
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.

Amy on stage at the Lilly National Paediatric Team Meeting

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”.

Amy and me on stage

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.

Final thoughts

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.

Amy’s Chat Show at the National Paediatric Diabetes Team Meeting

Lilly Diabetes ConferenceBack in April Dr Kar (@parthaskar) from the neighbouring QA hospital asked if Amy would be up for helping him out at a conference he was going to, the National Paediatric Diabetes Team Meeting hosted by Lilly in Birmingham. I guessed she wouldn’t, it’s not her thing, but I asked and she said ‘Yes’, her thoughts of helping Partha outweighing her fear of public speaking.

Part of the excitement was getting chauffeured to Birmingham in a shiny Mercedes but he was due at 11:30am and should have been here 15 minutes ago. Our house is notoriously hard to find and it turns out he didn’t have my mobile number. Finally I found him by walking around the area and we were off. I quick call to Nicki at Lilly and we found out Amy was on at 14:45, our ETA 14:30, perfect. That was until the roadblock north of Oxford which saw us divert towards London. ETA 14:50, not so perfect. Nicki said don’t worry though.

Rushing into the hotel Nicki met us and Amy got miked up, alongside 19 year old Rebecca who goes to QA, but where was Partha: stuck at Oxford. The chair, Dr Fiona Campbell, padded out for a bit but it was clear Partha wasn’t going to get here in time and the show must go on. Easy for adults to adapt to but not so easy for a 13 year old with a fear of public speaking. Fiona took control and Amy and Rebecca took to the stage.

The idea of the slot was to be a chat show, with Partha calmly asking Amy and Rebecca questions about their care, what they like, what they don’t and what would be the ideal service for them. Amy knew these questions and we discussed in the car how she’d like to respond, trying to make the experience as easy for her as possible. Trouble is Fiona didn’t know these questions, nor the interviewees, but I must say that she winged it incredibly well.

Amy looked nervous on the sofa sat next to Rebecca but then I saw she was also sat next to Alex Silverstein, someone whom I follow on Twitter and we’re friends on Facebook but our paths had never yet crossed. I felt better, Alex would take care of her I thought, although of course he didn’t know it was Amy sat next to him.

With the first question asked Rebecca gave a great long answer, before Fiona asked Amy who then got a bit tongue tied. More and more questions asked and Amy opened up giving great answers with the information she knew about. She was asked about talking to the GP about diabetes and said she never had and wouldn’t as she’d talk to her diabetes team. Fiona asked why Amy wouldn’t think about going to the GP and Amy answered exactly the same way I would: if it’s diabetes related we’ll go to the people who are the specialists.

Questions were asked about Skype consultations, preferred types of wards for any hospital admissions (general young persons’ ward or specialist diabetes) and whether they’d prefer letters being addressed to them or their parents. Letters? No thanks, these are young people, they want emails, or (as suggested by Fiona) text messages. They were asked if they ever saw a post-clinic letter, they hadn’t. I felt like stepping in and saying that yes we get a letter, two months after clinic, a letter which informs us of our insulin-pump-wearing child’s basal-bolus units and ratios but nothing about her pump’s basal profile or insulin:carb ratios. That letter goes straight in the bin.

With the show over Amy’s first DSN Debbie came over to see us. She had no clue we’d be there and took a while to recognise it was Amy on stage, but she was so proud, remembering that 10 year old who she’d helped through her first injection. I was bowled over to see Debbie again and similarly to meet Alex after all these years. I shared text messages with DSN Sarah who works in Southampton but couldn’t see where she was in the room. One of our DSNs was at the conference but we never managed to see each other. But that wasn’t too much of a surprise in a room of 300 or so.

Post chat show and we shared some lunch with Partha – who arrived just as the session ended – and we discussed the event, how it went, questions that were asked. It was nice to talk about emerging technologies too, like the Abbott Flash Monitoring.

In the car Amy seemed disappointed, feeling she hadn’t done so well, remember getting tongue-tied on the first question, but she had done well and later I showed her some comments from people I’d never met before who saw this tweet:LillyConfTweet1TweetFrankie1


If you’re wondering whether the chat show format worked…


More importantly it was seen as a success in two ways. Firstly Amy went in at 8.7mmol, an hour later she was 8.7mmol (although then she ate evil pizza!). Secondly, this…


Lilly Diabetes Conference