MEDICAL TRAVELLERS: UNDERSTANDING THE GROWING PHENOMENON OF BRAIN TUMOUR PATIENTS SEEKING TREATMENT OUTSIDE THE NHS STANDARD OF CARE

Abstract AIMS While the majority of UK brain tumour patients receive treatment within the NHS, some seek additional treat- ment, including abroad, to access therapies not available in the NHS. These treatments often involve substantial costs, limiting them to those with sufficient resources or able to undertake fundraising. There is no data on how common this is; where people go; what treatments they have; and how much it costs them. This study aims to assess the numbers seeking treatment outside the NHS, what treatments they have, the costs involved, and to document their experiences. METHODS Our Brain Bank, in collaboration with Imperial College London, designed an online survey for patients and/or caregivers, including the option for a follow-up qualitative interview. The questionnaire is distributed in col- laboration with relevant charities and health-care professionals after being advertised through social media, and word-of-mouth. The survey is designed to be completed in fewer than 10 minutes. RESULTS Data collection is ongoing, but interim findings show a significant number of UK brain tumour patients seek treatments outside the NHS. This often involves contacting treatment providers outside the UK or requesting referrals from their UK oncologists to specialist centres overseas. CONCLUSION This study highlights a critical unmet demand for brain tumour treatments that are not available within the UK public healthcare system. Healthcare professionals report an interest among patients in accessing treatment outside the standard of care. Seeking treatment abroad presents significant financial and logistical challenges as well as considerable risk for patients and their families. A literature review is underway to understand the treatments that have been identified and to assess data regarding their efficacy.