University of Nottingham: Shining light on Tourette’s research with Trent Building illumination

The iconic Trent Building at the University of Nottingham will be lit up in green on Tuesday 7th June to raise awareness of Tourette Syndrome (TS) and the research taking place to develop new treatments and address stigma that exists around the condition.

There are multiple research groups at the University from the Schools of Medicine and Psychology and Institute of Mental Health working on TS, exploring the experience of people living with Tourette’s and developing of a new wearable device to help reduce tics.

TS is a neurodevelopmental disorder that is usually diagnosed between the ages of eight and 12. It causes involuntary sounds and movements called tics. Tics are involuntary, repetitive, stereotyped movements and vocalisations that occur in bouts, typically many times in a single day, and are often preceded by a strong urge-to-tic, referred to as a premonitory urge (PU).

From May 15th Tourettes Action is running Tourette’s Awareness Month to de-stigmatize TS and show the general public what the reality of TS looks like, dispelling some of the myths that surround it. Emma McNally, Chief Executive Officer of Tourettes Action said: “It’s shocking that a condition so prevalent is still so badly misunderstood. More than 300,000 people in the UK are known to have Tourette’s, but that number is probably much, much higher. We want to use Tourette’s Awareness Month to help raise awareness of this condition, and help to remove the stigma. With awareness, comes acceptance, and this is a key part of our work – enabling people who live with Tourette’s to be fully included in society. People with Tourette’s often feel isolated and excluded because the level of awareness in society is so low. It’s our goal to change that.

“I’ve heard from parents who talk of holding their child in their arms in tears, unable to stop motor tics that are so repetitive they become physically painful. Adults who describe muscle spasms so intense and so uncontrollable that they are in extreme pain and yet are unable to stop the tics. Many try to suppress and hold in their tics when in public, which just intensifies the problem when they get home or somewhere private. Increasing awareness and acceptance of the condition can help to stop this.”

Previous research from the University of Nottingham’s School of Psychology used repetitive trains of electrical stimulation to the median nerve (MNS) at the wrist to entrain rhythmic electrical brain activity – known as brain oscillations – associated with the suppression of movements. They found that rhythmic MNS is sufficient to substantially reduce tic frequency and tic intensity, and remove the urge-to-tic, in individuals with TS.

At the School of Medicine’s Institute of Mental Health (IMH), researchers at MindTech have recently demonstrated the efficacy of a new online behavioural intervention for tics (ORBIT) in an NHS trial. They are now seeking funding to carry out real-world implementation work so that more young people with tics can receive timely access to evidence-based behavioural treatment. To support this work, researchers are asking adults to complete a survey about their experiences seeking help for tics, which you can find out more about below.

Researchers at the IMH have secured funding from the Institute for Policy and Engagement to increase public understanding and impact of tics. They will explore the lived experience of children and young people, their parents and adults with tic disorders or TS with a focus on their experiences of accessing healthcare, which is often difficult. The results will be used to create an animated video to support future campaigns to improve access to care.

We know that there is still stigma attached to TS and this acts as a barrier to people accessing treatment which can lead to poorer mental health and longer term problems. Our research aims to increase public awareness and knowledge of tics in order to reduce stigma and improve understanding amongst healthcare professionals and the general public. We’re still looking for more participants for this study so would love to hear from anyone who might like to take part.”
Dr Maddie Groom, Director of the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan (CANDAL) at the Institute of Mental Health, is leading this study
Researchers at IMH and MindTech are conducting surveys to understand the experiences of visiting the GP for tics. The project involves two online surveys which aim to understand people’s views on the support offered for tics by GPs in the UK. Through the surveys, the researchers would like to know what people think is good about the current care offered for tics by GPs and what can be improved. They would also like to know how many people got a referral to a tic specialist and, if they did, what it is like to get a referral for further assessment and management. Once the findings are published, it is hoped that clinicians see the results which may then lead to them improving the current services they provide, benefitting people seeking support for their tics from their GP in the future.

Based on the previous research by Professor Stephen Jackson at the School of Psychology, a spin-out company from the University of Nottingham, Neurotherapeutics Ltd, has now developed a prototype device, worn like a wrist-watch, that can be used by participants in their home setting with support from researchers in Nottingham. The trial will expand on the previous research and will involve 135 individuals with TS. The group testing the device will be shown how to use the device and will then be asked to use it at home at the same time each day for 15 mins for a period of one month. Selected people will also be videoed each day and each week participants will give feedback on their experience. The research is being funded by the charity Tourettes Action, NIHR Nottingham Biomedical Research Centre and Neurotherapeutics Ltd.