Despite the several months build up to our second national conference on Saturday 14 April during IBS Awareness Month, the excitement of the day is already starting to fade! What I do remember however, is how good it was to talk to the range of delegates who made the journey to Sheffield to take part in this important event, particularly those living with this sometimes debilitating, long-term condition. I do know what a challenge a long journey can be when someone is constantly toilet-mapping. The team and I received many calls and emails in the run-up to the day from those asking if we had plans to host similar events around the country. The challenge for us, as we told people, is that we are a small charity with a stretched, limited budget and organising and hosting such an event at arms-length is extremely costly. However, we really do want to come to a ‘venue near you’ and based on your feedback we will be exploring the possibility of developing a Roadshow type event where we can tap into regional IBS healthcare expertise and experience.
In this blog I would also like to reflect on some of the other comments we received on the day and through our feedback forms. Delegates enjoyed the presentations from a range of speakers, many enjoyed the gut-friendly lunch we had laid on, but what the majority said they particularly liked was the opportunity to talk with other people who truly understood how they were feeling. Many have had decades of living with a condition which at best is not taken seriously and at worst ridiculed.
Comments included, “meeting other sufferers was very empowering. I feel much less alone.” And “Presentations were excellent. Talking to other IBS sufferers was hugely therapeutic.” It was clear that the majority of delegates found the conference an empowering experience, the positivity in the room was tangible, which was very gratifying for the team and I who had worked hard in the run-up to the day to make it a success. However, we did receive a number of comments about what we packed into the long day. We have definitely taken this on board and, as I said, will be looking at a slightly different format in the following few years.
One or two people said they would have liked to have had some specific guidance on what food they could eat. As we stressed on the day and on our website, IBS is so individual that what one person can tolerate, another person is unable to take, even a little. The key to self-management, (with the support of your healthcare professional and The IBS Network), is to understand what triggers your IBS, be that food or what is going on in your life, or maybe a combination of both. The IBS Network have produced a Wellness Diary which enables you to keep a note of what you are eating and what is going on in your life for 12 weeks. After a few weeks of completing the diary you may be able to start to recognise patterns emerging of which you were unaware. Certainly after 12 weeks, and with a bit of distance, with the help of your healthcare professional, you may be able to understand what is causing you stress and/or physical symptoms.
Looking to the future, when we asked delegates what sort of events they would like to see in the next few years, many said they would like similar conferences with the majority saying they would like to see us run events around the country. I foresee that we shall be extremely busy in 2019 and beyond! Delegates to the conference particularly enjoyed the opportunity to discuss what was important to them in the break-out groups. The team and I appreciated that many people attending large conferences are reticent about talking in front of a few hundred people, particularly about something which is so personal. Smaller groups enable people to share their experiences in what feels like a safe, friendly environment.
Also, what everyone agreed on was the need to raise the profile of the condition, to lobby to ensure that it is taken more seriously by the medical profession and by society in general and break the taboo about talking openly about the condition. Ideas included more frequent conferences, meetings, events and support groups around the country, television documentaries and fundraising events. I couldn’t agree more!
In 2016 we ran the first Support Group Leader training day and have subsequently hosted a couple more with another planned in October. Our members tell us how beneficial it is for them to share their experiences with others who truly understand what it is to live with IBS, and sometimes to be able to laugh together! It is proving challenging for all sorts of reasons to establish groups around the country, but we plan to persevere. If you think you would be able to run a support group in your area, get in touch with us. We are a dedicated team of three full-time and one part-time officer but there is only so much we can do on our own. That is where our volunteers come in as an integral part of the charity’s wider team. We encourage people living with IBS to talk about their experiences so that people without the condition will have a better understanding, we talk to employers and explain how they can better help and understand their employees with IBS at work and we build relationships with commercial companies to enable us to be sustainable and continue to support people with IBS.
Everyone has a part to play, in the words of one of our delegates, “From today we all need to help with raising the profile of IBS and lobbying government”. I second that!
About the author
Alison Reid is the CEO of the national charity, The IBS Network, which supports people living with Irritable Bowel Syndrome.
You can read more blogs related to IBS and gut health here.