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My journey: Delivering person-centred neuroscience – from a van

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By Neil Bindemann, neuroimmunologist and founder of the Person-Centred Neurosciences Society.

It was in 2004 when the Primary Care Neurology Society (P-CNS) was established, with one of the main objectives being: to support the education of primary care health professionals to ensure people with suspected neurological conditions receive appropriate and timely specialist care.

While today, in 2023, this remains a key objective, the society is has evolved considerably and we recently introduced a new vision that acknowledges the need to listen to and learn from people’s living or lived experience.

That vision is: “to provide sustainable, consistent, and high-quality care and education services that consider and support the individual needs of the person, so they can live well in the community with suspected or confirmed neurological conditions.”

This change, which includes the society’s mission, was in fact a result of a living experience, and a ‘penny dropping’ moment for me.

It was five years after urgent and potentially life-saving neurosurgery, which led to the news of the life-altering diagnosis of a brain tumour, when I suddenly thought: “We must have healthcare professionals living with neurological conditions.

Consequently, that lead to me to invite health professionals who live with neurological conditions onto the P-CNS Steering Committee.

It was that same thought which also led to the P-CNS adding ‘Person-Centred Neurosciences’ to its identity, with the main motivators behind that change being:

  • to encourage the introduction of more person-centred care across neurosciences, helping to raise the standard of services across primary care and the wider neurology community.
  • for the public to become more aware that health professionals are also people, some of whom have endured hearing life altering medical news.

To explain what I mean by being person-centred, perhaps it is best if I share the words from a slide, perhaps surprisingly for some, presented during this year’s Royal College of Physicians annual conference:

What is a person?

  • a human being regarded as an individual” [OED]
  • A person has
    • their narrative identity, and
      • associated personal characteristics such as
        • attitudes, beliefs, expectations & long-term life goals & priorities

Relating this question of “What is a person?” to the world of healthcare, and neuroscience, here is what the society wrote in the paper “What it is it like to hear life-altering medical news? Perspectives from health professionals” published in 2021:

“Given that the sense of wellbeing is likely to be unique to the individual, when the disturbance to the nervous system is such that a diagnosis is reached, it is likely that the same diagnosis will affect people differently.

While this may seem obvious, it arose out of listening to the experiences of many people including healthcare professionals who, when asked questions, felt the questions were more directed at the condition rather than toward them, the person.

So, perhaps a good starting point to help in becoming more person-centred is to consider reviewing the nature of questions typically asked during a consultation.

Plus, as Dr Anita Rose, neuropsychologist, with both a living experience and professional experience working with people after a brain injury, highlights in that same paper:

  • “Be prepared for the moment – even if you have only a few minutes take some time (in the loo if necessary!) to centre yourself, do a mindfulness exercise.
  • “Be in the moment – it can be very hard telling someone bad news but there is nothing worse than a distracted clinician looking at emails, acting as though you are one of many that day. Being in the moment allows for empathy to be shared.
  • “Live through the moment – be prepared to go in all directions as you will not be able to know how it will go because everyone is an individual (and that includes you).
  • “Give time for the moment – ensure you have time to be able to deliver the news.
  • “Reflect on the moment – after you have dealt with the situation reflect on how you are feeling, listen to your body and be kind to yourself.”

Other key points that came out of the research that contributed to our 2021 paper and poster presentation at the 2023 annual conference of British NeuroPsychiatry Association can be read on our website.

But you may be wondering what the van has got to do with all this.

Well, my imagination got the better of me when we started to explore various innovative ways to deliver person-centred care messages and highlight a need:

  • For people to learn more from what it is like to hear life-altering medical news.
  • For emotional health support to be provided for all, including healthcare professionals in imparting news and the individual receiving the news.
  • To encourage more open, honest, and secure discussions from the start.
  • To encourage a feeling of hope, ownership, control, plus being ‘safe and secure’ – it is important to us all.

The result comes in the shape of my Café Neuro Kafe van, which certainly seems to be capturing the imagination and drawing plenty of interest.

Firstly, I drove it up to this year’s Neuroconvention and no, I didn’t park it in the car park, I had a wonderful time parking it up onto our exhibition stand.

As you can see in the photo, it certainly drew attention.

We were there to also run a session on the new Person-Centred Rehab Standards developed by the growing Community Rehabilitation Alliance. Details of those can also be found on the society’s website.

Then, and in total contrast, I took it to my local Farmer’s Market in Tonbridge, which is also where the society has supported the launch of a new community ‘pop-up’ Neurocafe.

One of the aims of the Neurocafe is to offer a safe place for the local population of people living with a neurological condition to come together and support each other.

A third project for the society, and in partnership with the Lifestyle Health Foundation is ‘Person-Centred Neuroscience 2023’.

This is a new and innovative event, designed to raise awareness of how through the sharing of trauma-informed experiences, service providers can become more person-centred and learning more about the significance of emotional health in helping to optimise a person’s mental and physical wellbeing. To learn more about Person-Centred Neuroscience 2023, which is designed to:

  • encourage the sharing of thoughts and ideas, through conversation with people who have a trauma-informed experience, and
  • stimulate the creation of various practical solutions.

Please visit our website at www.p-cns.org.uk, where you will also read about our steering committee members.

If you wish to attend P-CN 2023, and be part of the planned conversations, which we hope to publish, you would be most welcome.

We’ve set aside 20 places for NR Times readers. When you book online, please quote code NR20, and that reduces the current discounted price to below £80. You can reach the online booking page via our website

If you share the society’s desire to generate more person-centred neuroscience solutions, which for us includes creating awareness and generating solutions that support the emotional health needs of service providers, please join us. For the past eight years or more, we have only charged a one-off fee of £45 (i.e. no annual fee). That has been possible thanks to funding received, in the past, via sponsorship. Those past sponsors remain listed on our website, as a thank you, and in the hope that fresh sponsorship will be identified in the coming months. In the meantime, we will continue to identify ways to self-fund the society, so our work can continue. If you do wish to support us, you can do that via a simple registration process. Thank you.

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