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Providing expert support to people affected by neurological problems

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Life with Chiari Conference

On 4 November 2017, Brain & Spine Foundation organised a one-day conference for adult patients affected by Chiari malformations and associated conditions such as syringomyelia. The ‘Life with Chiari’ conference saw 120 attendees fill the lecture theatre at the National Hospital for Neurology and Neurosurgery,  Queen Square, London. Patients, their family and friends, came from all parts of the UK to hear experts talk about Chiari malformations and how to manage life with this condition. It was also an opportunity for many patients to interact with others affected by similar experiences. 

Alice Doyle, CEO of the Brain & Spine Foundation, opened the day, sharing news on the Brain & Spine Foundation’s work. She talked about responding to the high demand for support from Chiari patients and their families on the helpline, leading to a decision to run this conference as well as plans to develop new resources for this group. 

The Chair for the day was consultant neurosurgeon Mr Graham Flint, from Queen Elizabeth Hospital in Birmingham, who spoke about Chiari symptoms and diagnosis, as well as current treatments and research.

Simon Thompson, the UK’s only consultant nurse specialist on hydrocephalus at Queen Square, talked about this neurological problem, as well as shunts and how this medical procedure can help Chiari patients.

After the lunch break, Kayleigh Salter, who is a Chiari patient currently working at St John's Ambulance, spoke about her personal experience on managing life with this condition, giving the audience helpful advice and tips. 

Susannah Worby, clinical specialist Occupational Therapist at the National Hospital for Neurology and Neurosurgery, spoke about fatigue and fatigue management for people affected by Chiari in her presentation about promoting functional independence in day-to-day life.

We were really pleased to receive very positive feedback on the conference from those who attended. 92% of attendees who filled in the evaluation form considered the event to be either ‘good’ or ‘very good’ overall. 

“I just wanted to say a big thank you to all the team for Saturday’s Chiari Conference. It really was a very special day, hugely beneficial both for relatives and ‘sufferers’ alike.”

“Excellent, informative and friendly environment for patients, carers and health professionals to learn more about the condition”

“Fabulous event, exceeded my high expectations”


BSF's Helpline and Information Manager Angela Collett, Neurosurgeon Consultant Graham Flint and BSF's CEO Alice Doyle

Presentations and media resources  

The speakers at the conference were kind to allow their presentations to be made available to the general public so that those who were not able to attend would still have access to these information resources. The event was also filmed by Chocolate Films Video Productions, who are currently editing the videos.

  • Diagnosis, treatments and latest research, Graham Flint
  • Hydrocephalus and shunts, Simon Thompson
  • Pain and pain management specific to Chiari with Dr Anna Mandeville. [Anna was unable to speak at the conference due to ill health, but her presentation will be made available]
  • A patient’s perspective on Chiari with Kayleigh Salter. [Kayleigh did not have a PowerPoint presentation, but her talk was filmed and will be made available]
  • Promoting functional independence within day to day life, Susannah Worby

Thank You

The conference was kindly supported by United Business Group. Managing Director, Terry Woods attended the event with his wife, Barbara.

“I am honoured to be supporting the conference personally as well as in a business capacity. As a sufferer of Chiari myself, I understand how important this day will be for everyone attending.” – Terry Woods

Thanks also to Peter Sutton and the team at Queen Square Enterprises for their help in enabling us to use this fantastic venue for our event.