24 hours in the life of brainstrust support
*All names of patients and carers have been changed.
8.50am Helen takes a call from Jodie to talk through a very complex case that involves several people. Jodie has a coaching session booked with Jed, a father of a young, adult daughter with a life limiting prognosis, and she just wants to run her thinking past another member of the team before she picks up the phone.
10am Carol is setting up for her first Behaviour and Personality Change coaching workshop in Glasgow. This event is to support people with managing the behaviour and personality changes that can come with living with a brain tumour. The community will enjoy lunch, share experiences, support each other and become stronger on their brain tumour journey. They’ll have a safe space to talk and be heard about one of the most challenging aspects of living with a brain tumour, benefit from improved well-being, and learn some effective strategies to help cope with managing behaviour and personality change.
Jodie is on the support line today and takes any calls from patients and caregivers. She will deal with any immediate problems and then refer to caller on to their support specialist.
3pm Helen heads for a meeting with a caregiver who has a close friend with a glioblastoma. Antonia* is working on a project that puts patients at the centre of brain tumour research and wants to explore this in more detail. She knows that brainstrust is closely aligned with the clinical research community through our work with the JLA PSP and NCRI and has heard Helen talk at a real world evidence conference.
4pm Carol heads home after her workshop. The evaluations show that the attendees found it transformative. Carol will follow up with them all in a couple of weeks to see how things are going.
“Feel connected with others in similar situations”
“Glad I made myself attend, very welcoming and friendly”
She is already planning her next one in Edinburgh. Her evening is spent picking up referrals that came through from Jodie whilst she was away from her desk.
4.30pm Helen heads back to Southampton. On her way home she is meeting a caregiver for supper. He recently lost his wife to a brain tumour. Martin’s wife, Anna*, had so many beautiful clothes but he doesn’t feel able to discard them when they hold value. brainstrust recently held a fundraising event, She Wears It Well, where clothes were sold in a pop up shop to raise vital funds. In the Spring, with some of Anna’s friends, this can be arranged again, as part of Anna’s legacy.
10pm Home time. Helen checks any urgent calls and emails, relocates the dog and checks her diary for the following day before heading to bed.