A proven new online behavioural therapy package could help the NHS address its current shortage of trained therapists and specialist services needed to support the 1 in 100 children and adults who are living with tics and Tourette’s in the UK.

A new NIHR-funded study, ORBIT-UK, will bring together teams from the NIHR’s MindTech HealthTech Research Centre, the University of Nottingham, Great Ormond Street Hospital, East Midlands Health Innovation Network, commercial partner Blüm Health Ltd, and patient organisations Tourette Action and Neuro-diverse.org, to take previously researched and evidence-based online behavioural therapy intervention for tics in young people (known as ORBIT – Online Remote Behavioural Treatment for Tics study) and turn it into a patient-ready digital tool deliverable at scale within the NHS.

With funding from the NIHR Invention for Innovation (i4i) Programme, the new 36 month project will be led by Dr Charlotte Hall (Principal Research Fellow University of Nottingham/MindTech) and Professor Chris Hollis (Professor of Child and Adolescent Psychiatry and Digital Mental Health/Director of MindTech), who outlined the necessity for this new project:

"This project represents a huge step forward in our ability to improve access to evidence-based care for thousands of young people with tic disorders, who currently have little or no access to tic behavioural therapy."

“By translating world-leading research from the MindTech ORBIT trial into a tangible ‘NHS-ready’ digital product, we can address a huge unmet need. The project brings together world-leading experts from clinical practice, academic and industry to create the UK’s first guided online digital therapy for tics available for patients within the NHS.”

Tic disorders are common, affecting 1% of children and young people in the UK (110,000), and impact daily on educational functioning and mental health. Tics are involuntary movements or sounds which frequently co-occur with other psychiatric conditions. Clinical guidelines state behavioural therapy is effective and should be the first-line treatment for tics, however, in the UK, over 80% of young people (88,800) with a tic disorder receive no treatment at all due to a lack of trained therapists. The online delivery of therapy can close this treatment gap, by increasing access without requiring more highly trained therapists. This was demonstrated in the ORBIT trial; a large randomised controlled trial delivered from 2017 – 2021 with findings recently published in The Lancet demonstrating that a 10-week online behavioural therapy programme for tics, with low-level therapist support, improved tic symptoms long-term and was cost-effective. The therapy was also highly acceptable to the trial participants with excellent uptake.

Emma McNally, CEO of Tourette Action, highlighted the postcode lottery many families face when seeking diagnosis and treatment for Tourette’s and tics:

“More than 300,000 people in the UK are known to have Tourette’s, but that number is probably much, much higher. Many people report that they are unable to access treatment locally, more often than not, they gain a diagnosis and then are discharged with no follow-on care and no access to treatment."

“I’ve heard from parents who report they are in crisis, with nowhere to go for help, many often needing to pay privately for treatment, they 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 tics so intense and so uncontrollable that they are in extreme pain and yet are unable to stop the tics but unfortunately are also unable to access help and treatment."

“The results from the ORBIT trial were very promising, developing this into a clinical service could potentially help lots of individuals who are unable to access treatment locally, it will enable them to access evidence-based treatment to help them better manage and control their tics online, ultimately removing the postcode lottery we are facing and make treatment available to all regardless of where they live.”

The newly funded ORBIT-UK project aims to produce an online therapy tool that is patient-ready for use within the NHS with an established commercialisation route. The team are partnering with Blum Health to develop an NHS-compliant platform suitable for roll-out across healthcare services in the UK. The East Midlands Health Innovation Network (HIN) and the Centre for Healthcare Equipment & Technology Adoption (CHEATA) will support national adoption, including assessment of ‘real world’ costs and benefits to the NHS and develop a national dissemination strategy.

Dr Michael Watts Co-Founder and CEO at Blüm Health Ltd praised the project’s collaborative approach:

“This project is a prime example of where healthcare, academia, and industry converge to create the best possible outcome for our service users. For Blüm and the team, this is another step in the right direction to creating the quality digital infrastructures that we expect as healthcare providers and recipients. It is a privilege to be a part of the vision and we look forward to turning this innovation, into a reality."

The ORBIT-UK project will begin in April 2024.

This study is funded by the NIHR i4i Product Development Award NIHR205467. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.