How I want to be treated by health professionals

Headway East London occupational therapist, Morven Brown, shares how a new aid to help people better communicate with health professionals after brain injury was created at Headway East London and why its members believe it’s an important tool.

Headway East London is a charity supporting people affected by brain injury. Working across 13 London boroughs, it offers specialist support and services for over 200 survivors,family, friends and carers each week.

The charity’s mission is to empower its community of brain injury survivors and their families to imagine new possibilities and to achieve this, it provides therapies, advocacy, family support and community support work alongside its day service; a venue where members can make the most of their abilities and interests.

Occupational projects include an art studio, music groups, a gym and a professional kitchen. Headway East London’s day centre holds a weekly Friday ‘catch up’ group with the purpose of exploring common challenges and themes around brain injury. The topic is not set beforehand and it changes from week to week, depending on what people want to explore on the day.

For example, the group may explore issues such as fatigue, memory, problem solving, relationships, family, mental health, or living with a disability. It’s
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 of the members began sharing the difficulties they face while being treated by medical health professionals and how
this was impacting negatively on their mental health and sense of autonomy.

From this discussion the idea for the creation of a new document – How I want to be treated by health professionals after my brain injury – began to
emerge.

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, in such instances, 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. It has a comprehensive list of ‘do’s’
and ‘don’ts’ for health professionals, including:

• Do speak directly to me, not to my family orcarer.
• Do support me to make my own decisions.
• Do find the time to understand my visible and hidden disabilities.
• Do have patience if it takes me longer to process information, think through and respond.
• Do provide me with all treatment options… so I can make an informed decision.
• Don’t assume all my symptoms are related to my brain injury.
• Don’t just ask if I understand, ask me to reflect back what I have understood.
• My brain injury doesn’t define me. Don’t fixate on my weaknesses and limitations – what are my strengths and potential?

Yoki, a Headway East London member and co-facilitator for the project says: "The reason I personally decided that it would 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 mefeel stripped away of my independence."

I am regularly humbled to work with such an incredible group of individuals. I hope that this document will help to make the journeys of those living with a brain injury less difficult in future.