Peer Support Group
Private Facebook group
Over 200 patient or care givers have joined this peer support group. It is private and members have to agreed to four questions to be let into the group so it is mainly patient focus. It is scary to think that 200 patients need to find us and there is no peer support groups within the hospital. There are breast cancer/prostate/skin cancer support groups in Arc and other hospital settings. The reality for 30/40 year old patients- we had to google to find support.
Better access to clinical trials and new treatment
In Cancer Trails, there are numerous trials for all cancers. In 2023, Cancer Trial approached us to have patient advocate on their Gastrointestinal Group. We worked with Cancer Trials Ireland, Medical Practitioners to try and improve trials for our little sub set. Yet, there is only 1 trial for patients which is very restricted as it is industry lead trial. There are over 74 trial ongoing yet Head &Neck, Sarcoma, Lymphoma and Gastrointestinal have 1 trial only.
In the Oireachtas Health Committee (April 2024), Professor M. John Kennedy explained the complexity of trying to organise a trial in Ireland. Data Protection issues, not enough trained clinic trials staff and health regulatory environment and Irish small population does not make Pharmaceutical companies to invest in Ireland. Our wonderful oncologist usually trained abroad and develop great network so sometimes, patients can avail of compassionate reasons. https://www.oireachtas.ie/en/debates/debate/joint_committee_on_health/2024-04-10/2/
Working with other Digestive Advocacy Groups
Bowel Cancer Ireland has worked with Digestive Cancer Europe so we can find out more on bowel cancer in Europe and create a network for the future. One of the ladies shared her story. 16 Stories of Courage and Resilience, the diagnosis came as a shock, as they had never heard of this cancer before due to their young age. Instead, this disease disrupts their lives during what is typically considered the most active and dynamic period of life — building a family, raising children, and pursuing their dreams
https://digestivecancers.eu/youre-young-but-it-might-be-cancer/
We are working with Bowel Cancer UK to get advice and support for our Peer Support Group.