New research from RCSI University of Medicine and Health Sciences has highlighted significant gaps in rehabilitation services for people diagnosed with a brain tumour in Ireland, prompting calls for greater investment in specialist care, clearer referral pathways and improved supports for patients and their families.

New research from RCSI University of Medicine and Health Sciences has highlighted significant gaps in rehabilitation services for people diagnosed with a brain tumour in Ireland, prompting calls for greater investment in specialist care, clearer referral pathways and improved supports for patients and their families.

The findings, published in a new policy brief from the RCSI-led Brain-Restore research project, reveal that 70% of healthcare professionals surveyed reported long waiting lists for rehabilitation services, while 61% identified a lack of clearly defined care pathways for people with a brain tumour.

To coincide with Brain Tumour Awareness Week (24–31 October) and in response to the challenges identified through their research, the research team has also launched a series of educational videos, co-funded by Brain Tumour Ireland. Featuring patients, family caregivers and healthcare professionals, the videos provide practical information and guidance on living with and recovering from a brain tumour diagnosis.

Recently updated data indicates up to 700 adults are diagnosed with a primary brain tumour in Ireland each year. Patients can experience a range of physical, cognitive and psychological difficulties that affect their independence, everyday functioning and quality of life. While rehabilitation can help people manage these challenges, access to appropriate services remains limited and fragmented.

Led by researchers in RCSI's School of Population Health and School of Physiotherapy, the Brain-Restore project engaged with more than 200 people, including patients, family caregivers, healthcare professionals and charity representatives, to better understand rehabilitation needs and identify opportunities to improve care.

The research found that patients and families often face considerable challenges navigating the healthcare system, particularly following hospital discharge and completion of initial treatment. One patient described the experience of seeking rehabilitation as having to "battle for rehabilitation", while another recalled their family being left to figure out what support was available and who to contact.

Calls for improved rehabilitation services

Dr Ailish Malone, Senior Lecturer at RCSI School of Physiotherapy and co-lead of the Brain-Restore project, said: "People diagnosed with a brain tumour often receive intensive, highly specialised medical care in hospital, but once they return home, that level of support can fall away dramatically. Patients and families can find themselves navigating a fragmented system, without a clear pathway to the rehabilitation they need.

"We hope this research will help inform policy and service planning so that rehabilitation becomes a more accessible and integrated part of care, not something patients and families have to fight to access."

The Brain-Restore policy brief calls on policymakers and Health Service Executive (HSE) management to strengthen rehabilitation services through dedicated neuro-oncology survivorship clinics, patient navigator roles, personalised rehabilitation plans, enhanced education and knowledge sharing, and increased investment in community-based rehabilitation and psychological supports.

Fiona Keegan, CEO of Brain Tumour Ireland, said: "A brain tumour diagnosis can have a profound impact on patients and their families, who are often left navigating a complex healthcare system at an incredibly difficult time.

"The Brain-Restore findings reinforce the urgent need for better access to rehabilitation and more joined-up care. While we hope these recommendations will lead to meaningful improvements in services, we are also proud to have co-funded these educational videos, bringing together the experiences of patients, families and healthcare professionals to provide practical information and support for those affected."

The educational videos and resources are freely available at the Brain-Restore website.

The Brain-Restore research was a collaboration between RCSI, University College Dublin, Beaumont Hospital, the National Rehabilitation Hospital and Brain Tumour Ireland, with contributions from additional clinical, academic and community partners.

The project is funded by Health Research Charities Ireland, the Health Research Board, Breakthrough Cancer Research and Brain Tumour Ireland.