brainstrust: Providing Personalised Support

brainstrust is an organisation dedicated to supporting patients and caregivers affected by brain tumours. brainstrust provides a personal touch and deep understanding to help thousands of individuals facing, and living with, brain cancer.

To help us understand more, we spoke to Helen Bulbeck, co-founder of brainstrust. Having personally experienced cancer both as a patient and caregiver, her firsthand understanding of the challenges faced by patients, caregivers, and healthcare professionals allows her to empathise deeply and provide valued support to others.

In this blog, we explore who brainstrust is, delve into the organisation’s goals, and understand how it works to support both patients and caregivers.

The goal of brainstrust

brainstrust aims to ensure that anyone living with a brain tumour can have their best possible day, even during end-of-life care. By focusing on maintaining a sense of personhood rather than just being a patient, the team works to enable individuals to be more resilient, to face challenges with confidence and to empower people to live fulfilling lives.

However, brainstrust’s support equally extends to caregivers, who Helen explains, it’s important to recognise have distinctly different needs and concerns. Caregivers often seek solutions and clinical trial options, while patients diagnosed with life-limiting brain tumours strive to make the most of their remaining time. For both groups, they provide tailored resources and coaching, helping to address challenges.

Understanding the brain tumour community

Having supported patients and caregivers for 18 years, both Helen and brainstrust understand the key challenges and motivations within the brain tumour community. Whilst individuals consistently want access to specialists and comprehensive care within their local communities, they’re also looking for support on a much deeper more personal level.

Patients want to have conversations which are centered around wellness maintenance, rather than solely being focused on treatment. They want to have honest discussions that move beyond medical matters, and instead address their personal aspirations and goals.

In order to support the wider community, via its website, brainstrust offers a variety of resources and services to cater to the diverse needs of the community it interacts with, including practical hands-on guides for people and caregivers living with a brain tumour. It conducts online programs, coaching workshops, and health, social and wellbeing events which often include expert speakers from the brain tumour community. All of its activities and resources aim to bring people closer together, empowering individuals with a shared sense of understanding, compassion and experience.

Building connections and confidence

brainstrust develops agency for those living with all brain tumours, supporting them to become active participants in their own healthcare. myTomorrows too shares this goal. We want to help amplify the support brainstrust gives, and support patients and caregivers by helping them to access and discover treatment options. Recently, the myTomorrows team has been partnering with brainstrust to hold patient webinar share groups, highlighting how our patient navigator team can support individuals in their treatment discovery journey.

Chatting with Helen, it’s clear just how remarkable an organisation brainstrust is and the impact the personalised support it provides has. With its deep understanding and personal touch, brainstrust improves the quality of life for individuals facing brain cancer. Through tailored resources brainstrust empowers patients and caregivers to make informed decisions and face their challenges with resilience. By prioritising personhood over patienthood, they offer a holistic supportive approach.

myTomorrows is proud to support brainstrust’s mission and be working alongside the charity.

If you or someone you are caring for is living with a brain tumour, you can email the brainstrust team on hello@brainstrust.org.uk. You can also book a call with one of the myTomorrows patient navigators by clicking here.