From Advocacy to Action: The Journey of Sarcoma Cancer Ireland
At Sarcoma Cancer Ireland, we strive to empower those affected by sarcoma, offering vital support, education, and advocacy to enhance their journey and overall wellbeing.
Advocating for Sarcoma Care: The Fight for Specialist Support in Ireland
In June 2016, the employment contract for the only dedicated sarcoma oncologist at St Vincent’s University Hospital in Dublin was not renewed. The care of all sarcoma patients was transferred to a number of other oncologists at the hospital, none of whom had specialised in this rare cancer. A small number of patients came together to form the Sarcoma Action Group and lobbied the Minister for Health, Simon Harris, to reinstate the sarcoma specialist. The group quickly gained media attention through a series of public protests and were granted a meeting with Minister Harris to discuss the matter.
At this meeting, on 8th July 2016, Minister Harris informed the patient group that he was creating a new fulltime position for a medical oncologist who specialised in sarcoma. It was a huge win for the group. However, joy turned to disappointment as a series of bureaucratic delays meant that the post remained empty for four years. During this time, the Sarcoma Action Group put continual pressure on the Minister for Health, the HSE and the hospital to ensure that the post was not shelved, all the time providing emotional support to newly diagnosed sarcoma patients.
Once the incoming sarcoma specialist started work in September 2020, the group began focussing more on awareness and support and renamed themselves as Sarcoma Ireland. Work began on improving knowledge of this rare cancer through social media campaigns and patient stories.
From Support Group to Charity: The Birth of Sarcoma Cancer Ireland
During the global pandemic, a small number of patients and carers discussed the idea of evolving the support group into a charity. Early conversations centred around a wishlist of what we thought was needed – education, advocacy and support. These became the 3 pillars that our charity focussed on.
After much hard work and careful planning, Sarcoma Cancer Ireland was granted charity status by the Charities Regulator of Ireland in February 2024.
Our Board of Trustees comprises a mix of sarcoma patients and carers. They all have first hand knowledge of how cancer impacts families and experience with navigating the Irish health system. Our volunteer network stretches across all counties, North and South.
We receive no government funding. All services and activities undertaken by Sarcoma Cancer Ireland is 100% funded by public donations. Board members and volunteers do not receive payment for their work and all money raised is spent on furthering the goals and strategies outlined in our Annual Plan. From our initial beginnings as a protest group to our current work as an official cancer charity, we are proud of our progress and excited for our future