End the Postcode Lottery

Guarantee Equal Healthcare Access for Tourette Syndrome

POLICY RECOMMENDATION
Integrated Care Boards must commission services to meet the healthcare needs of people with Tourette syndrome

THE PROBLEM
1 in 100 people live with Tic Disorders such as Tourette syndrome (TS). They are more likely to be unemployed, die by suicide and experience poor mental & physical health[1, 2]. Effective evidence based treatments exist, but few NHS clinics offer any treatment, leading to patchy and unequal access to care across England[2]. Many are unable to access healthcare locally – a postcode lottery[2].
Freedom of Information requests identified only 12 NHS Trusts that currently provide a full diagnostic and treatment pathway for tics in children and young people (Figure 1). This lack of services leads to unacceptable waiting times and inequality compared to other conditions of similar prevalence, such as autism.
Integrated Care Boards (ICBs) have an obligation to provide high quality care for ALL. Many are failing to provide care for people with tics and TS. This increases the risk of harms and poor outcomes in this population and increases costs to healthcare and social systems.

OUR SOLUTION
With healthcare and lived experience experts, we have co-designed a best practice care pathway for the referral, assessment and treatment of tics in children & young people. Find out more here.
This pathway offers health economic benefits and productivity gains from greater service efficiencies and is designed to be flexible to fit local needs.
The pathway can easily embed technological innovations to improve equitable access to care.

IMPLICATIONS for Integrated Care Systems
Implementing a clear diagnostic and treatment pathway for tic disorders will improve the outcomes of this population and reduce societal and healthcare costs arising from untreated tics.
Our pathway is designed to be integrated with existing services for mental health and neurodevelopmental conditions which frequently co-occur with tic disorders. It is therefore low-cost and efficient to implement.
Our health economics case studies (presented below) highlight economic benefits from implementing a clear diagnostic and treatment pathway for children and young people with tic disorders.
The care pathway can be easily adapted for adult services.

THE EVIDENCE
Tics reduce quality of life and wellbeing, cause pain and physical harm, and lead to reduced social, occupational, and psychological functioning[3,4].
A national survey on the healthcare experiences of 1508 people with lived experience of tic disorders was conducted by the National Institute for Health & Care Excellence (NICE) in 2024 (Figure 2):

• Over 50% with a tic disorder waited over 1 year for diagnostic assessment
• 23% waited more than three years
• Less than one third were offered an evidence-based treatment for tics

Our qualitative research captures the psychological and mental health impacts of poor access to healthcare5 and amplifies the voices of the lived experience community. See more about our research here.

The following innovative digital interventions are being developed to improve tics. Clear care pathways will be crucial to embed them within the NHS and maximise their potential:

• Online behavioural therapy reduces tics in children and young people and this is maintained at 18-months follow-up in a randomised controlled trial (ORBIT trial)[6]
• A wearable stimulation device has shown reduced tics in young people and adults over a 4-week follow-up period (Figure 3)[7].

HEALTH ECONOMICS AND CASE STUDIES
We have gathered evidence demonstrating there will be an economic benefit to ICBs and the wider Integrated Care Systems if they provide a diagnostic and treatment pathway for tics and TS.

1. In a randomised controlled trial, tic severity was associated with greater use of healthcare services and more school absences in children and young people participating in the trial[8].
2. Participants in the trial receiving an online behavioural therapy intervention experienced a significant reduction in tic severity[8]. Health economics analysis showed potential cost-savings of £1 million to the NHS if the intervention is rolled out nationally (based on estimated prevalence of tic disorders in children and young people)[8].
3. See below for case studies of the healthcare journeys of two young people with tics, where inefficient care pathways resulted in unnecessary costs.

Healthcare journey of Liam (aged 6) from 2017-2023:

1. Visited the GP at least 6 times
2. 7 referrals to specialist services including health psychology, neurology, CAMHS, Paediatrics and a specialist tic clinic (most were declined)
3. At least 7 CAMHS appointments
4. Received a diagnosis of tics in 2023 by a CAMHS Psychiatrist and was placed on a waiting list for CBIT
5. No treatment received at the time of gathering the data

Total cost of NHS healthcare: £3,512.55

Healthcare journey of Yasmin (aged 12) from 2022-2023:

1. Referred to paediatric services and neurology (both rejected)
2. Referred to a specialist tic service (rejected due to being out of area)
3. Family paid to see a private neurologist
4. Received multiple conflicting diagnoses.
5. No longer attends mainstream school
6. No treatment received at the time of gathering the data.

Total cost of NHS healthcare: £1,594.76

We estimate a cost of £1,146.76 per patient for a clear referral, assessment and treatment pathway which would lead to a reduction in per-patient costs compared with these example patient journeys[8].

FURTHER RESOURCES
For further information about the Improving Tic Services in England (INTEND) study please visit our website. Our recommended care pathway, research papers, and other articles will be available here.
Find out more about the work of the Tourette Syndrome Steering Group - UK.
Further information about tics and Tourette Syndrome is available from Tourettes Action.

REFERENCES

1. Cruz et al. 2017 Suicide in Tourette’s and Chronic Tic Disorders. Biological Psychiatry.
2. Hollis et al. 2016 Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette Syndrome: A systematic review and qualitative analysis. NIHR Health Technology Assessment.
3. Taylor et al. 2022 “I'm in pain and I want help”: An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders. Frontiers in Psychiatry.
4. Eapen et al. 2016 Comorbidities, Social Impact, and Quality of Life in Tourette Syndrome. Frontiers in Psychiatry.
5. Marino et al., 2023 Patients' experience of accessing support for tics from primary care in the UK: an online mixed-methods survey. BMC Health Services Research.
6. Hollis et al. 2023 Long-term clinical and cost-effectiveness of a therapist-supported online remote behavioural intervention for tics in children and adolescents: extended 12- and 18-month follow-up of a single-blind randomised controlled trial. Journal Child Psychology & Psychiatry.
7. Maiquez et al. 2023 A double-blind, sham-controlled, trial of home-administered rhythmic 10-Hz median nerve stimulation for the reduction of tics, and suppression of the urge-to-tic, in individuals with Tourette syndrome and chronic tic disorder. Journal of Neuropsychology.
8. Hall et al., 2024. Healthcare utilisation and costs associated with poor access to diagnosis and treatment for children and young people with tic disorders. British Medical Journal.

FIGURE REFERENCES

1. Figure 1: Map of ICBs in England. Areas with a full tic pathway shown in teal.
2. Figure 2: NICE survey data on time to diagnosis in people with tic disorders.
3. Figure 3: Wearable stimulation device for tics www.neupulse.co.uk

AUTHORS
Professor Maddie Groom, University of Nottingham, This email address is being protected from spambots. You need JavaScript enabled to view it.
Dr Camilla Babbage, University of Nottingham, This email address is being protected from spambots. You need JavaScript enabled to view it.

CO-PRODUCTION
This Policy Brief was co-produced with members of Tourettes Action, TIC-Yorkshire and Genius Within, members of the lived experience community, academics and healthcare professionals with expertise in tic disorders.
We are grateful to the Institute of Mental health and the Institute of Policy and Engagement at the University of Nottingham for their support.