The idea for the document “How I want to be treated by health professionals” began in our weekly Friday “catch up” group at Headway East London.
The purpose of the group is to explore common challenges and themes around brain injury. The topic is not set beforehand and changes from week to week, depending on what people want to explore on the day.
For example, the group may explore issues like fatigue, memory, problem solving, relationships, family, mental health, or living with a disability. It is a safe space for members to share difficulties with others who understand, explore potential solutions and support each other. This is often the only space members have where they can speak openly about the difficulties they are experiencing with people who truly understand and can empathise.
During one discussion, some members began sharing difficulties they faced while being treated by medical health professionals which impacted negatively on their mental health and sense of autonomy.
As a health professional, as well as an advocate for people with brain injury, I saw this as a learning opportunity for myself and colleagues, as well as a means of empowering people with brain injuries.
By creating a document summarising the kinds of difficulties encountered we could:
- Empower people living with brain injury to share, process, and adjust to some of the changes they have experienced since their brain injury.
- Turn those experiences into something useful that could be helpful for other people when encountering health professionals. For example, when encountering health professionals, people living with brain injury could simply indicate on the document what adjustments might help them.
- Educate and inform health professionals about how to optimise their communication and behaviour when working with people who are living with a brain injury.
It was important that the information be presented in a way that was simple, quick to read and to the point. This way it was more likely to be implemented.
The final document is a summary of several weeks of input from members across Headway East London.
I am regularly humbled to work with such an incredible group of individuals who are true survivors. I hope that this document will help to make the journeys of those living with a brain injury less difficult in future.
Special thanks to my co-facilitator (member) Yoki, who is a true inspiration in her strength, courage and compassion.
Morven Brown, Occupational Therapist
“The reason I personally decided that it’ll be a good idea to put this in words is because I have seen how doctors treat me and other people living with brain injury. I feel that they undermine me and make me feel like I have no options in what I say. So I’m always scared to see a doctor. Also, I feel like I can’t visit a doctor by myself. This all makes me feel stripped away of my independence. “
Yoki, Headway member and co-facilitator
“As a volunteer who is also a brain injury survivor, it was great to be involved with group members speaking about their experiences with health professionals. I went into the project thinking that people would each be talking about their individual and different experiences with health professionals. However, it quickly became clear that we had all had some very similar experiences, and it’s really rewarding to know that through these conversations came some simple “Do’s” and “Don’ts”, which could potentially be helpful for health professionals and brain injury survivors.”