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Getting diagnosed

A diagnosis of Tourette Syndrome (TS) can lead to greater understanding of the condition, access to healthcare, support networks and services.

For TS to be diagnosed, multiple motor tics and at least one vocal tic must be present for at least 12 months.

TS can only be diagnosed by observing and evaluating symptoms and there are rating scales to help with the assessment of tic severity. Some doctors may use an EEG, MRI, CT scan, or certain blood tests to rule out other conditions that might be confused with TS such as epilepsy, autism, dystonia and Sydenham’s chorea.

What will a diagnosis give me? 

A diagnosis provides a framework for understanding TS related actions and behaviours, not only for the individual but also for everyone in their system (e.g. family, friends, teachers, employers).  This level of understanding is the foundation to living with TS.  A diagnosis can also provide access to support and health services and help avoid discrimination and misunderstanding

Who can diagnose TS?

Health professionals who can diagnose TS are: Neurologists, Psychiatrists and Paediatricians.  GPs are the gatekeepers who refer you to a consultant for further assesment

The steps to getting diagnosed with TS

To pursue a diagnosis of TS there are some simple steps to follow:

  • Keep a diary – note down the different movements and noises, and any other out of the ordinary behaviours you may notice.  If possible video the tics, so that you can present this along with a written diary of symptoms to your GP and consultant.  .
  • Contact Tourettes Action for informationemail the TA Helpdesk for information and a list of consultants specialising in diagnosing and treating TS.
  • Ask your GP for a referral – visit your doctor to discuss your concerns, taking the diary, any videos and information from TA along with you. There is no universal pathway to diagnosis.  Some people are referred to local services initially such as a community paediatrican, CAMHS, or a neurologist for an assesment.  Following this you may be referred to a specialist from the consultant list, if it is felt appropriate.  Other people may be able to access a direct referral from their GP to a specialist from the consultant list.  Factors such as location, access to services, and whether consultants take referrals from primary care or secondary care practitioners influences the different pathways to diagnosis.
  • Appointment with a specialist – take your tic diary and videos along to your appointment. You can also prepare by reading our ‘Seeing a specialist’ checklist which outlines questions you might expect to be asked. During the appointment the specialist will talk to you about the symptoms and will observe any tics during the meeting. They will make a clinical diagnosis based on their observations and if they diagnose TS they may suggest relevant treatment.

To receive information about TS and a list of consultants please email our Helpdesk. For information on how NHS referrals to a consultant work please visit the NHS Choices website.

After being diagnosed with TS

Based on your needs your consultant may arrange another appointment to see you again, or it may be felt that treatment can continue through your GP and other local services. Either way, your consultant will write to your GP informing them of the diagnosis and you should receive a copy of this letter.

You should arrange an appointment with your GP to discuss treatment going forward. When you see your doctor you should discuss what services are available locally to you.

There is various support available through TA for people with TS. Please read our Services page for more information.

The role of CAMHS in treating TS

Your GP may refer your child to Child and Adolescent Mental Health Services (CAMHS) for treatment of TS. Some CAMHS are very good on TS, but this is often because there is an individual practitioner there with an interest in the condition.

CAMHS is a specialist NHS service offering assessment and treatment of children and young people who have emotional, behavioural or mental health difficulties. Although each team will differ slightly, they are likely to include professionals such as paediatricians, clinical psychologists, psychiatrists and family therapists.

If a young person is presenting with behavioural problems or other TS like symptoms, they may be referred onto CAMHS by their GP or another third party such as school or social services. Although CAMHS is not set up to treat TS per se, clinical skills can be used to help support co-occurring features and conditions including Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD) angry behaviour, low mood, anxiety,and sleep problems..

If you would like your child to be referred to CAMHS you should speak to your GP. Many schools or social care providers are no longer able to refer.

"Having a diagnosis has meant that I can access the help and support I need to be independent and happy"

 
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