Yesterday saw the first Type 1 diabetes conference in Portsmouth, the Sweet Meet. I've been waiting for this moment since I started getting into my diabetes 2 years ago and I'm so grateful to the Portsmouth diabetes team for pulling it off.
I arrived early and immediately started chatting to other patients. We talked about our experience with diabetes, struggles shifting weight, availability and criteria for pumps, the lumps and bumps that injecting can bring... many hadn't spoken to others with diabetes outside of the clinic walls.
I mooched around chatting to members of the diabetes team that I hadn't met before. It was interesting to see how well they work together and what a happy little team they have. Then Kev (@Oceantragic) and his daughter, Amy rocked up, closely followed by Mark (@thedteam) who had come from Swindon for the day. One of the other patients from my pump trial was there too, it was good to see familiar faces supporting the day.
Partha (pompey diabetes consultant) kicked off with an intro to the day: Talks, info stands, refreshments, speed dating with health care professionals and commissioners, networking with others with Type 1 and a talk from Dr Iain Cranston about current research and the future of diabetes treatments.
I'd been asked to speak at the conference about my journey with Type 1 and my past and present experience with the diabetes team. I should have really prepared something to say on the day, rehearsed the main points that I wanted to get across, but I didn't want to sound stiff. Practice makes perfect and my diabetes is far from perfect!
Instead I decided that my approach would be to 'wing it' (an approach that I use on a daily basis), smile a lot and make jokes at Partha's expense. This seemed to go down well, and after Partha had taken up most of my talk time with his intro, I managed to get a few words in. I still find it difficult to speak out loud about my past with diabetes, but it's getting easier. I could hear words of encouragement and understanding from the other patients as I talked, it was nice to be face to face with people who really knew how I felt.
Next up was a chance to 'Speed date' with different members of the diabetes team; a dietician, podiatrist, consultant, psychologist, antenatal nurses, community diabetes specialist nurses, adolescent diabetes nurses and commissioners. On our table of 6 we had 8 minutes with each HCP to ask them questions about the service, make suggestions about how it could be improved and tell them what works well. It was interesting to get feedback on our questions and have the promise that they would be followed up.
My questions about the availability (or lack of) psychological support, foot pathways, online carb counting tools, education for GPs, out of hours and 24/7 care were answered as best they could in the time we had, but I have much more to ask... I arranged to speak to a few members of the team in my own time to see what could be done. When our time was up it we networked with other patients. I chatted with a lady from Bristol who runs 4 diabetes support groups and has a lot of experience in dealing with diabetes teams and commissioners.
I met the most amazing man, Derek, who was 76 and has had diabetes for 61 years! He told me that he's never had a complication in his life and his secret was keeping fit.
I was introduced to a lad who was a similar age to me. He'd come from Reading as he used t go to University in Portsmouth. He was looking for others his age to speak to in his local area, so I told him that I would spread the word on twitter and facebook and see if I could find anyone.
Finally Iain Cranston (pompey consultant and tech geek) presented research and treatments that are available and on the horizon. New ways of delivering insulin via pumps and pens, tattoos that could tell a person when their blood sugars were high or low, CGMs, closed loop systems etc. I love listening to Iain talk - he's so clever and passionate about new technologies, I try to keep up in appointments and we often start and finish by discussing what's available or what's coming our way.
As the Sweet Meet came to a close I felt proud that I'd been asked to be a part of the day, that the team had done such a good job in setting it up and that we had been listened to. It was a great experience to attend a conference where I wasn't just talked at. I think that's where many diabetes conferences go wrong - the patients are there with ideas and they should be heard.