In July 2021, between Covid lockdowns, we managed to hold our first ever seminar and workshop for young adults with IBD.

Some years ago I attended two EFCCA Youth Group assemblies in Slovenia and Paris. The meeting is held over a weekend and has delegates from Europe attend and share how they run Youth Groups in their respective countries. On my return to New Zealand, having been a volunteer at Camp Purple for some time, I brought the idea to the Board of CCNZ. The need for this was further cemented at Camp Purple where we found that more and more volunteers were gaining just as much as the kids from sharing their experiences with each other and were placing questions in the anonymous Q + A box year after year.

Three years ago, we followed this up with a survey of New Zealand patients and asked them if they would be interested in attending an educational seminar for patients between 18 and 35 years of age. Over 90% of people surveyed expressed an interest in attending a weekend event. In the survey we got an idea of what was needed and how we were going to pull it off well.

Fast forward to the pandemic year 2020, Belinda and Richard sourced a venue in Wellington and preparations began. Wellington was an easy choice of location, accessible, fun and cheap to get too!

We gathered a small committee made up of:

Dr Richard Stein, Professor Michael Schultz, Lucy Smith, Belinda Brown and myself.

We decided on a range of topics and speakers to present them:

• IBD 101 – Professor Michael Schultz
• Fertility and pregnancy – Dr Sophia Savva 
• Navigating your healthcare system – Dr Richard Stein
• Diet and nutrition – Dr Catherine Wall
• Travelling and IBD – Professor Michael Schultz and Karen Murdoch, RN
• Mental health and IBD – Hollie Asprey, Registered Psychologist
• The IBD nurse’s role – Karen Murdoch, RN
• Alternative medicines – Professor Michael Schultz
• Employment Law and IBD – Lucy Smith, Solicitor

We also decided to have some panel discussions where patients could share their stories and experiences with the group.

• Stoma’s
• Educating your partner about IBD

Our hugely dedicated CEO, Belinda secured funding towards the accommodation and venue costs, which dramatically reduced our registration fees. We were able to waive a few fees for those who were unable to afford to come. Thank you, Takeda, our sponsor for the event, for helping with this.

The day finally arrived, Friday 30th of July, and although there was a looming lockdown in sight, we were able to proceed. We were welcomed by the Chair of CCNZ, Dr Richard Stein, and Belinda got us into ice breakers and getting to know each other.

Saturday morning saw us jump into IBD 101 and finishing up the day at 3pm with IBD and mental health. Finishing up on such a deep topic, we broke away for some free time. It was awesome to see friendships starting and groups went to visit Te Papa Museum, others went exploring in Wellington City, and some just went to have a rest in their rooms to prepare for our dinner and guest speaker.

Just after dinner we had a guest speaker, the parent of an IBD patient, a Wairarapa radio personality, active rugby referee and Masterton District Council councillor, Brent Gare. Brent spoke to the attendees about how they are the authors of their own story. Some groups then went to out for a boogie in the city and some played some games in the lobby.

Everyone turned up on time on Sunday morning, some brighter than others and we were back with Professor Michael Schultz presenting the second half of IBD 101 and the day finished with Lucy Smith presenting Employment law and IBD.

Feedback is always a great judge of how the event went, and with over 90% of participants wanting to attend again, this was a very satisfying outcome of our first IBD seminar. Our committee will be meeting in the new year to decide on dates and venues. Make sure you follow CCNZ’s Facebook and Instagram accounts to keep up to date.