Projects led by steering group members include 

 

ImproviNg Tic Services in EnglaND (INTEND) study

An NIHR-funded project led by Dr Maddie Groom at the University of Nottingham and supported by the UK charity Tourettes Action, launched on November 1st, 2023. The ImproviNg Tic Services in EnglaND (INTEND) study will explore current service provision for tics and Tourettes in England.

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Welcome to ORBIT

This study was finalised in 2021.

The ORBIT team have secured further NIHR funding to continue this important work – More information about ORBIT-UK can be found here

The Online Remote Behavioural Treatment for Tics study (‘ORBIT’ for short) was a four-year project funded by the NIHR Health Technology Assessment.

This project involved working with young people and their families to test out two new online behavioural treatments for tics and Tourette syndrome. These online treatments had already been tried out in Sweden. The study aimed to see whether they are also useful for children and young people in England.

The project was a collaboration between the University of Nottingham, NIHR MindTech MedTech Co-operative, Nottinghamshire Healthcare NHS Foundation Trust, Great Ormond Street Hospital, University College London, and the Karolinska Institute in Sweden. 

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Enhancing GP Awareness

In the UK, people with tics and their families report varied experiences when visiting their GP for tics. Often these experiences are felt to be negative and cause further distress. Our work with patients and the public and tic charities suggests GPs often lack sufficient knowledge to appropriately support people with tics, including a lack of knowledge of the main symptoms and the processes required for secondary care referrals. Consequently, people with tics and their families describe stigmatisation, dismissal, and a lack of compassion when presenting to primary care.

A systematic review of healthcare experiences of people living with tics, their families, and healthcare professionals in primary and secondary care revealed that generally professionals can demonstrate sufficient knowledge of tics and tics disorders, they however may lack the confidence to manage the needs of patients. Clinicians discussed the benefit of having access to additional education in tics, having previously had too few opportunities during their professional training.

With the support of the Tourettes Action charity and the National Tourette Syndrome Steering Group at the University of Nottingham, this 3-year PhD project led by Adam Parker intends to develop an online learning resource package co-produced with GPs, using interviews and workshops to identify key training areas and accessibility. People with lived experience will also be invited to interviews, offering their insight on the support they would have liked to have received from their GP. It is hoped this generates a resource that meets the needs of all stakeholders involved in tic support in healthcare.

 

 

Tourettes Hear Us! (Qualitative study)

We are a team of academics and lived experience experts and advocates who have worked together to lead an innovative co-produced research study investigating the experiences of people with tics and Tourette Syndrome (TS) trying to access healthcare in the UK. Despite TS affecting at least 1 in 100 people, there are currently no guidelines for TS and no services in many parts of the country. Moreover, those affected often face stigma and misunderstanding from the public and healthcare professionals. We aimed to amplify their voices in the public domain and amongst healthcare policy makers.

This project includes co-delivered research and public engagement funded by the Institute of Policy and Public Engagement. The research comprised focus groups with adults and young people with tic disorders and parent/carers to explore their experiences of accessing UK healthcare for their tics. As part of the process, participants were given the option to provide additional consent for their voices to be used in an animation developed by Woven Ink, an external design company. The animation can be viewed here.

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Policy influence

In May 2024, with funding from the Institute for Policy & Engagement, Camilla Babbage led a workshop with a group of steering group members who have experience/expertise in policy impact. The aim of the workshop was to work together to co-design a Policy Brief summarising the research evidence on healthcare services for tic disorders. A second aim was to develop a visual identity for the steering group to support for public engagement and policy impact work in the future. We are collaborating with the company Woven Ink to develop the visual identity.

The Policy Brief can be viewed on the 'Policy Brief' webpage here.

 

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