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See the Person, Not the Condition: Neuro Speak Up

Posted on Apr 01, 2023
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By Peter Wyn Mosey
Peter Wyn Mosey participates in People Speak Up Projects, including Story Care and Share, People Sing Up, and Spoken Word Saturday. 

Before developing a serious health condition, everyone has their own identity, past, and life of rich experiences, hopes, wishes, and needs. We’re all humans, and these universal factors are true of everyone. Although a person’s life may have changed due to their health, they still have all those things.

It’s easy to see the specific problems that a condition brings, and when that happens, it can erode someone’s sense of identity. It’s as if, to the world around them, they have become their health condition.

So, in all interactions, whether in a treatment or care setting or anywhere else, it’s vital to treat people as individuals, regardless of their condition.

Neuro Speak Up is a new project at People Speak Up. Facilitated by Louise Bretland-Treharne, Karl Treharne, and Alan Thomas, it’s a supportive space open to people with brain conditions, their carers, and anyone that wants to develop awareness.

I spoke with Louise, Karl, and Alan to learn more about the group and discuss how we can all see the person, not the condition and to learn about Neuro Speak Up.

What are the problems in overlooking people’s individuality, wants, and needs and just focusing on their condition?

Even if two people have the same named neuro condition, it doesn’t mean they cope or react in the same way.

Every person has their own set of personal experiences, strengths, talents, and ways of coping, which enable them to be independent at home or while out. This is often taken away, limiting choice in care and support services, inaccessible transport services, and most of all, when people only see the condition and not the individual, it can take away a person’s equality.

What can everyone do to ensure those around them are treated as individuals, not as a condition?

By listening to the person and engaging with them, you will get to know them as individuals.

We need to respect their journey and let the person tell you what they would like to divulge about their condition. Give them the space and time to be them, see the person first, not the condition.

What we have seen so far in the Neuro Speak Up group on Fridays is if you let people speak at their own pace and time, you see them grow with confidence, and they themselves will share their thoughts on what condition they have and how they cope on a daily basis.

By letting the person be the person, you are showing them respect as a person. When we talk within the group, most people talk about everyday situations and their condition is hardly ever mentioned unless the person wants to bring it up and then the group naturally supports that person by listening and also giving them the space to talk.

Through listening and learning from each other, we’ll empower others to live with their own condition.

What is Neuro Speak Up?
Neuro Speak Up is a supportive group which takes place at The Ffwrnes Fach - Arts, health and well-being hub with People Speak Up in Llanelli. Our first project to be led by volunteers.

PSU Artistic & Business Director, Eleanor Shaw, valued the idea and provided a space to have group meetings fortnightly on Fridays from 1.30 pm - 2:30 pm. Eleanor offers exercises in creative deep listening to start the session.

Louise, Karl, and Alan got together and shared their ideas and awareness of needing more local support for people diagnosed with neurological conditions, diseases, or brain-related disorders. What we have always been keen to highlight is to see the person first before any diagnosis or named illness.

The group is a space where patients, carers, and family members are welcome to attend and share their experiences and expertise in living with a Neurological condition. We believe that the patient is the expert in their own condition.
As a first-time visitor to Neuro Speak Up, what can you expect?
New situations can be daunting for many. If you’re coming to a Neuro Speak Up session for the first time, it helps to know what you can expect.

• You can expect a warm and friendly welcome and a cuppa with others in the group.
• We introduce ourselves.
• We share our own feelings, thoughts, and experiences with the group (if you want to).
• A creative activity (again, if you want to). People in the group feel that having a creative aspect gives them focus and helps them to relax.
• Sharing our ideas and knowledge.
• Equally being heard and feeling valued

See the Person, Not the Condition: Some Practical Tips

In life, we often make assumptions about other people. Although we feel like we might be helping someone, changing the pace, tone, and volume of our voice based on an assumption their cognition can offend and make people feel uncomfortable.

Instead, be yourself. If someone needs you to slow down or speak up, they’ll let you know.

Don’t assume that someone needs help. Most people value their independence, and taking away these tasks removes autonomy. Asking if someone needs help is fine, but if they refuse your assistance, it’s important to respect their choice.

Using person-first language is important. When you use a person’s condition to describe them, it can dehumanise them. Referring to someone as a “person with a disability” is very different to calling them a “disabled person.”

Join Us at Neuro Speak Up

Neuro Speak Up is held fortnightly on a Friday from 1:30 pm - 2:30 pm and is open to anyone with a brain condition and their carers. The group is open to anyone who’d like to improve their awareness of supporting and interacting with those that have neurological conditions.

The session is hybrid, meaning you can either attend the group in person at Ffrwrnes Fach or join us online via Zoom. If you’d like more information or want us to send you a link to join online, email us at info@peoplespeakup.co.uk.