Brain tumour group supports the hardest conversations
Patient groups are uniquely placed from lived experience to guide on how to have the toughest of conversations. The UK patient group charity, the Brainstrust, offers a wide range of support via its website, including sharing their experience on dealing with the challenges of living with brain tumours, and talking with others about your experience and needs.
Making conversations happen
The Brainstrust site offers a comprehensive set of resources, including two downloadable guides relating to talking about brain tumours.
‘Walking a mile in our shoes’ is written by Lucy, sharing practical advice from her experience of living with her fiancé Ryan, who died from his brain tumour. In a straight-talking PDF, Lucy shares tips on how family and friends can talk more openly about living with brain tumours, and help patients and carers to feel less isolated:
“We often felt we were Mr and Mrs Invisible. People couldn’t see the new us, only knew how to be comfortable with the original us, not the new 2.0 versions post diagnosis.” – Lucy, Brainstrust
The guide reassures people on a range of topics including the importance of not ignoring or denying the diagnosis, and how best to offer help.
Crucially, Lucy shares the importance of being able to talk about the day to day medical side with friends and relatives:
- “It’s OK to talk to us about our trips to the hospital for appointments and to ask us questions…. It might brighten our day just knowing someone was brave enough to ask.” – Lucy, Brainstrust
How to hold a difficult conversation
Another downloadable booklet by Brainstrust goes into more detail about `How to hold a difficult conversation.’
It’s structured in four parts:
- Step back and reflect, for example is this conversation needed now, and if so, why are you having it?
- Plan the conversation, including when and where to have the talk, how to open the discussion, types of useful questions, and how to close the conversation
- Have the conversation, including tips on listening, body language and being resilient.
The final part focuses on supporting a child around their medical consultations.
Dealing with personality changes
Similarly, Brainstrust offers support around the practical and emotional challenges resulting from the fact that up to 60% of people diagnosed with brain tumours experience Behaviour and Personality Changes. As well as offering tools to help track awareness of these changes, a webinar on the group’s YouTube channel addresses the issues in plain, direct language with practical guidance.
Addressing diverse needs
Given the very serious nature of the clinical materials from the group, one unexpected ingredient in their YouTube channel is a set of well-executed online tutorials in drawing cartoon characters. The online artist tutor uses a fixed camera above a desk, and shows how to build cartoon drawings step by step.
Under the banner of the `Woodle Doodle Club’, the supporting text explains its home on the Brainstrust channel:
“When you, or someone you love, has a brain tumour, often things become overwhelming. Anxiety, stress and uncertainty make relaxing hard. Doodling is the perfect escape. Get out of your head and immerse yourself in creative exploration, and find yourself in a completely different space.” – Brainstrust
Demonstrating an impact
Before leaving the Brainstrust site, their concise and clear approach to demonstrating the charity’s impact is better than most. Often metrics about a group’s impact, where these are collated, are buried deep in websites, such as in annual reports or reviews.
By contrast at the bottom of each page, the patient group lists what it achieved in the previous year, including:
“Our team manage 4948 patient and caregiver contacts
478 people attend 41 supportive events
111,605 people access our online information and support
2800 people in our online community to help each other to feel less alone.” – Brainstrust.
The list ends with an overall quality measure, backed by a detailed page on the metrics reported:
“93% of people reported a positive outcome after engaging Brainstrust for brain tumour support.”
