At brainstrust, as well as directly supporting patients and caregivers living with a brain tumour, we also actively connect with the clinical community so that we can work together for the benefit of those that we support.
We were recently invited to join a new patient and public involvement group set up by University Hospitals Birmingham and the University of Birmingham, called BERTI.
BERTI :Brain tumour Education & Research paTient & public Involvement, is open to people affected by brain tumours in any way, including patients, caregivers, healthcare professionals and researchers. Along with education and research, BERTI also aims to help optimise outcomes, improve clinical pathways and has patient centric care at the centre.
Aligning with the group’s mission, Jodie Eveleigh from the brainstrust support team and Adam Thomson, Patient Involvement Officer at brainstrust, presented to the group about strategies and support to help people manage and live well with fatigue, as well as talking about brainstrust’s PRIME movement. This supports the clinical research community with its work to ensure clinical research projects are aligned with patient need and to secure funding.
About being invited to the most recent group session, Adam said: “Attending and presenting at the BERTI event was a great experience. Sharing our PRIME work while engaging with new faces was lovely and I’m looking forward to working with those individuals again through our PRIME network”.
On the importance of working alongside the clinical community in this way, Jodie said “Being able to connect with different people involved with supporting people living with a brain tumour diagnosis is so important. It ensures that the patients needs are at the centre of everything that we do. It also means that we support each other by identifying certain areas, such as fatigue and research, that are important to our community.”
If you are interested in finding out more about BERTI, you can email Berti@uhb.nhs.uk
If you are a healthcare professional and would like to explore how we can work together, you can find out more here.