Due to the high levels of stigma received by people living with overweight or obesity, sharing experiences and advocating is not something very many have the courage to do.
Patients however began creating various support groups where soon it became clear how there is strength in numbers.
In 2011 one of these online support groups was set up by Maura Murphy who firmly believed patients needed a place to support each other. This group began to grow slowly bringing people together from many counties around Ireland. As Susie Birney joined the admin team this group without knowing it, began advocating together. Regular meetings began, family walks took place around the country, healthy lunch meetings were held. Patients began writing letters to their politicians about lack of services and advocating was happening slowly but surely.
In 2014 the newly formed European Patient Council for the European Association for the Studies of Obesity (EASO) asked the Association for the studies of Obesity Ireland (ASOI) for a patient volunteer to represent Ireland and this was the beginning of advocacy work in Europe for Vicki Mooney.
In 2016 Susie Birney became a patient representative with the ASOI and also joined the European Patient Council. Through hearing the experiences of other European representatives, it became clear that a patient led organisation in Ireland was needed. In 2018 the slow and steady recruitment of advocates began. Maura Murphy joined as a second representative for ASOI in 2019.
Reaching out widely to other support groups and people who had been advocating themselves, we aimed to increase the patient representation from around Ireland. We have volunteers who signed up and are still with us now. We also have had volunteers who decided it was not for them. Some volunteers have been happy to be involved in campaigns but did not have the time to commit to volunteer on a committee to form a non-profit organisation. It was a slow process, but we kept going despite barriers that we faced.
From first volunteering for the European patient council, eight years later Vicki Mooney is the driving force in leading European advocacy forward as the Executive Director of the independently formed European Coalition for People Living with Obesity, ECPO and is Chair of the Board of Directors for ICPO. Having guidance and support from Vicki has been crucial in finding our feet and moving forward.
Apart from trying to expand our network of advocates we have been working closely with healthcare professionals from different sectors across the country. Our close work and representation with the ASOI saw a turning point for patient engagement at the 2019 European Obesity Day event held in the Dublin Convention Centre. With international speakers, national leading experts, we saw many of our advocates present and engage which subsequent feedback showed raised major awareness among those who attended.
When Covid-19 lockdown first happened, we reacted quickly to adapt to the changes forced on us. With the support of ECPO we began hosting weekly online support meetings connecting people from around the country. Here we continue to support our peers and discuss the various challenges faced with living with obesity.
We have found ourselves busier than we could have imagined. We have been involved with various committees including with the HSE, and giving input to the new Model of Care for obesity.
We review materials, work with researchers, have had two NCPE submissions of evidence as patients and continue to share the lived experiences of obesity wherever we can.
Two main annual events are at World Obesity Day 4th March and The Living with Obesity Campaign Day on 21st October, and we bring together as many people both living with obesity, and healthcare professionals to raise important awareness of this chronic disease.
On August 11th, 2020, we officially incorporated as a non-profit organisation. We have four Board of Directors, 8 Executive Committee members, who all volunteer their time. Our mission is always at the forefront of any advocacy work we do; we aim to improve the lives of people who live with obesity in Ireland.
We have many volunteers who prefer to remain in the background rather than to be public about their involvement. Therefore, we do not have a directory of our advocates names. Respecting the privacy of our volunteers is of the highest importance to us and it is from this practise we see more volunteers joining us. We also have many support group members. Some who attend weekly and some who come and go as they need.
We look forward to growing as an organisation. We have come so far in such a short space of time and are incredibly grateful to every person both from home and abroad who has helped guide us in doing this. We still have much to learn and we are setting better boundaries with regards the expectations there are of us and the time we can commit.
We hope to begin planning an official launch very soon and we will share details as soon as we can.