In Charity News

24 hours in the life of brainstrust support

*All names of patients and carers have been changed. 

10.30pm The support line took a call from Jo*, a patient, who was feeling isolated and low. After 15 minutes chat about what she was struggling with and how she might tackle these things, she said it was a relief to have someone there to just listen. She was much happier and went off to make a cup of tea. She’ll get a follow up call within 24 hours from Jodie, our Midlands support specialist, to see how things are.
8am Helen is heading to London to meet Lucy* who is living with a brain tumour and who has a high symptom burden. She has a second opinion today at the National Hospital for Neurology and Neurosurgery. Her mother was going to go with her but was tragically killed a month ago, so Helen is going to go with her. Before going Lucy talked through what would be a good outcome for this consultation and has a list of key questions to ask.

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.

Jane, our London and SE support specialist, has a desk day. She is touching base with some patients and carers, as well as reaching out to some new ones.  But her main focus for the day is on developing a brainstrust Know How on Lasting Power of Attorney and a practical checklist of things to do before, during and after treatment; building on the already excellent work that a volunteer from our community has started for us.
12pm Jodie picks up the phone to Jed* for his coaching session. These tend to last about 60 to 90 minutes and give the person time to articulate what they are struggling with, what a goal would look like, what their options are and what the next steps are. Jed feels remote from his daughter and wants to be involved with her care but isn’t sure how to achieve this. He wants to make sure that he has left no stone unturned and that all options have been explored. This is his goal. So the session focuses on how he can achieve this, what does he need to know and who does he need in his team.
1.30pm Helen and Lucy take time to reflect on Lucy’s consultation and to note down the top notes and any questions that have arisen from the consultation. Helen will follow up with Lucy in a week after she has had time to process the information.

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.


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