What support is available for people diagnosed with a brain tumour?

Fiona Keegan

CEO, Brain Tumour Ireland

Approximately 400 adults and 50 children a year are diagnosed with a brain tumour in Ireland. 

For every adult diagnosed, there is a family; and for every child, there are parents and siblings who need support. Brain Tumour Ireland can help offer that support.   

Many patients who contact us have never met another person with a brain tumour, which can leave them feeling isolated and alone. With everyone in lockdown for the past two years, that feeling of isolation has been perpetuated for so many people.   

During those years, we moved our patient support groups online and started a new group for family members. Peer groups can offer a safe space for people to talk openly about the challenges they are facing. They also allow newly diagnosed patients to meet others who have experienced a similar diagnosis and treatment.   

This way they can offer comfort and hope to one another. In addition, we hold wellness days, online guided relaxation to music, an annual awareness week, updates on research and our annual remembrance service.  

We continue to develop ways to help and support children going back into education following their treatment.

Paediatric support for children with a brain tumour 

We continue to build ways to support parents of children with a brain tumour and recently ran a ‘survey for parents’ to better inform us and the medical profession of the ‘lived experience’ and the very real challenges parents face long after their child’s treatment has finished.   

The information gathered from parents has helped to shape the support services we deliver.  This 2023, we will be setting up a new online support group for parents as well as a one-to-one counselling option.  

At the end of each year, we bring our families together for our family day event which is held in Barretstown in December. This day is solely dedicated to having fun and is open to all children affected by a brain tumour along with their parents, siblings, grandparents, and carers.  

Helping people cope after a diagnosis 

We continue to develop ways to help and support children going back into education following their treatment and find ways to provide support for siblings as the family tries to navigate their way after a brain tumour diagnosis.