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Tourettes Action asked the TS community to tell us what questions they would ask health professionals and researchers working in the field of Tourette Syndrome.

We then put your questions to leading professionals both in the UK and internationally, and the following information is a collection of those answers, which we hope will provide value and interest to the TS community at large.

You can also visit our You Tube channel  to watch our 'Ask the expert' video interviews 

Ask the experts: behavioural therapy

What is exposure and response prevention for tics and what is the difference with CBIT or habit reversal?

Habit reversal training (HRT) or comprehensive behavioural intervention for tics (CBIT) and Exposure and response prevention (ERP) are both effective in facilitating tic reduction. According to European guidelines, these behavioural treatments are considered first-line interventions for tic disorders and Tourette Syndrome. Behavioural treatments not only focus on influencing tics directly, but also on changing environmental factors that worsen tics, like stress or attention, in such a way that it helps to reduce tics. CBIT combines HRT with these so called function based interventions. In the European guidelines function based interventions are considered additional or second line interventions that have their use in behavioural treatments for tics, also following ERP.

Both ERP and HRT aim to interrupt the association between premonitory urges and tics. Many TS patients report private events that occur prior to the tics, so called premonitory urges or tic alarms. These urges are described as somatosensory discomfort that temporarily diminishes when a tic is performed. From a behavioural perspective, tics can be seen as being maintained by negative reinforcement. Behavioural treatments aim to reduce the reinforcing value of the tics.

In ERP, patients learn to suppress their tics for a long time (which is called response prevention), while the focus remains on these sensations (called exposure). This allows the patient to learn to tolerate the sensations and urges, resulting in a reduction of tics. Whereas ERP treats all tics at once, HRT focuses on each individual tic. HRT consists of an awareness training to become aware of the tic and the preceding sensations and urges and is followed by a competing response training in which the patient learns to inhibit the tic.

In 2004 we published a randomised controlled trial in which we compared ERP with HRT on tic reduction, and found no significant differences between the two treatments. Possibly, both treatments share the same underlying working mechanism like urge tolerance and learning an alternative way of responding to the urge. In addition, in this study we found a trend in favour of ERP for patients who had many different tics. Although further research is much needed at this point, the results of this study seem to implicate that both treatments can be applied, depending on the choice of the patient, where ERP could be advised when there are many tics, while HRT seems to be indicated with single tics. In clinical practice, elements of both techniques are sometimes integrated, like the use of competing responses to facilitate tic suppression in ERP or being exposed to urges while inhibiting tics in HRT.

Griendt, J. van de, Verdellen, C., van Dijk, M. & Verbraak, M. (2013). Behavioural treatment of tics: Habit reversal and exposure with response prevention. Neuroscience & Biobehavioral Reviews, 37, 1172-1177.

Piacentini, J., Woods, D.W., Scahill, L., Wilhelm, S., Peterson, A.L., Chang, S., Ginsburg, G.S., Deckersbach, T., Dziura, J., Levi-Pearl, S., & Walkup, J.T. (2010). Behavior therapy for children with Tourette disorder: a randomized controlled trial. JAMA, 303, 1929-1937.

Verdellen, C., Griendt, J. van de, Hartmann, A., & Murphy, T. (2011). European clinical guidelines for Tourette syndrome and other tic disorders. Part III: behavioural and psychosocial interventions. European Child and Adolescent Psychiatry, 20, 197-207.

Verdellen, C., van de Griendt, J, Kriens, S., Van Oostrum, I. (2011). Tics - Therapist Manual & Workbook for Children. Amsterdam: Boom Uitgeverij/BT-Tics Fdn.

Verdellen, C.W., Keijsers, G.P., Cath, D.C., & Hoogduin, C.A., (2004). Exposure with response prevention versus habit reversal in Tourettes's syndrome: a controlled study. Behaviour Research and Therapy, 42, 501-511.

Wilhelm, S., Peterson, A. L., Piacentini, J., Woods, D. W., Deckersbach, T., Sukhodolsky, D. G., Chang, S., Liu, H., Dziura, J., Walkum, J.T., & Scahill, L. (2012). Randomized trial of behavior therapy for adults with Tourette syndrome. Archives of General Psychiatry, 69(8), 795-803

Tourettes Action would like to thank Dr Cara Verdellen, clinical psychologist, for answering this question.

For more information on behavioural therapies, including a list of UK practitioners specialising in Tourette Syndrome please visit our webpage

Why is medication considered more often for tics than Behavioural Therapy (BT)?

Tourette syndrome (TS) is a neurobiological disorder characterized by multiple tics. TS is often associated with neurodevelopmental and psychiatric comorbidities like attention-deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD).The biological nature of TS implies that patients with tics are often referred to a medical doctor, a neurologist, paediatrician or psychiatrist, who ususally prescribes medication as a first treatment option.

This is not only because they are doctors, but also because they are not familiar with first-line behavioural interventions for tics such as exposure and response prevention (ERP) and habit reversal training (HRT). So a second reason why medication is considerd more often than BT is a general lack of knowledge about behaviour therapy and its effectiveness in reducing tics.

Two other important reasons why many patients don't receive BT for tics are 1) a lack of availability of trained therapists who can deliver BT; this is a huge problem in Europe and worldwide, and 2) there are also concerns about negative effects of BT.

In 2011 Jolande van de Griendt and I performed a survey among TS professionals, all members of the European Society for the Study of Tourette Syndrome (ESSTS), which showed that most of them, also medical doctors, preferred a behavioural treatment above medication for their patients, which is in line with European Guidelines. However, they also reported several barriers, including concerns about BT resulting in a rebound of tics, a concern which is also heard from patients and their families. However, it is important to know that this idea is not supported by evidence from research. For example, in 2008 we published a paper in which we did not find an increase but a tic reduction following ERP treatment. ESSTS members also reported concerns that BT is only indicated for mild tics, a concern which is also based on a misconception, since research indicates that these treatments can be beneficial for mild tics and severe tics as well. A third concern was a lack of availability of these treatments. A lack of trained therapists to refer patients to was often a reason why they prescribed medication.

In addition, we applied a survey in 2014 among Dutch TS patients and their families, mostly members of the Dutch Tourettes association. Most people reported that they received medication for their child or for themselves to reduce tics, but when we asked what treatment they preferred, most of them reported a preferrence for BT. So most people had not received the treatment of their choice, which we found very disconcerting.

There were also concerns about behavioural treatments, such as the concern of a rebound effect following BT, which I already mentioned is not supported by evidence, and there was a concern that focusing on tics makes them worse, which again can be called a misconception, since this is not supported by evidence. Finally, a barrier for doing BT was that it takes effort, you need to practice to profit from it. Well, this is not a misconception, I can confirm this as a fact. If you don't practice, you will not benefit from BT. Like learning any other new skills, behavioural treatment needs to be enbedded within a supportive and positive environment to be most effective.

Griendt, J. van de, Verdellen, C., van Dijk, M. & Verbraak, M. (2013). Behavioural treatment of tics: Habit reversal and exposure with response prevention. Neuroscience & Biobehavioral Reviews, 37, 1172-1177.

Verdellen, C., & Griendt, J. van de (2015). Dissemination of Behaviour Therapy for tics - overcoming barriers. Poster presentation of a survey among Dutch TS adults and parents of TS children, London World Tourette Congress.

Verdellen, C., & Griendt, J. van de (2012). Awareness and application of behaviour therapy for tics in Europe, Data presentation of a survey among ESSTS members, Catania, Italy.

Verdellen, C.W., Hoogduin, C.A., & Keijsers, G.P. (2007). Tic suppression in the treatment of Tourette's syndrome with exposure therapy: the rebound phenomenon reconsidered. Movement Disorders, 22, 1601-1606.

Woods, D.W., Conelea, C.A., & Walther, M.R. (2007). Barriers to dissemination: Exploring the criticisms of behavior therapy for tics. Clinical Psychology: Science and Practice, 14, 279-282

Tourettes Action would like to thank Dr Cara Verdellen, clinical psychologist, for answering this question.

If spotted early, can I prevent TS progression with behavioural therapy?

This is a very important question, but not so easy to answer. Tourette Syndrome (TS) is a complex neurobiological disorder which starts around the age of seven, with a peak of tics around 10/12 years and then the tics tend to decrease in most patients, while there are also patients who still experience severe tics into adulthood. A variety of genetic and environmental factors likely play a role in causing the condition, but the exact causes are unknown and there is also no cure for the condition.

Behavioural therapy (BT) , like medication for tics, is not a cure for TS. BT learns a patient skills and strategies to gain control over the tics and to tolerate the urge to tic. It gives a sense of mastery and enhances self-confidence and self-esteem. Especially habit reversal training (HRT) or comprehensive behavioral intervention for tics (CBIT) and exposure and responsprevention (ERP) are of importance. Studies show that BT not only reduces tic severity, it also improves the quality of life of patients and their families. About 50% of patients benefit from a behavioural treatment and the techniques can also be applied for the rest of their lives as needed. Although we do not know why these behavioural treatments work, we think that with BT new neural pathways are created in the brain, which reflects a modern understanding of how the brain can be shaped by the environment.

So, although one cannot say that BT prevents TS progression, starting BT at a young age may have the benefit of learning skills to manage tics early in life, skills that can also be applied with new tics or worsening of tics, which is part of TS. In addition, starting a behavioural treatment at a young age improves overall functioning and quality of life.

Griendt, J. van de, Verdellen, C., van Dijk, M. & Verbraak, M. (2013). Behavioural treatment of tics: Habit reversal and exposure with response prevention. Neuroscience & Biobehavioral Reviews, 37, 1172-1177.

McGuire, J.F., Ricketts, E.J., Piacentini, J., Murphy, T.K., Storch, E.A., & Lewin, A.B. (2015). Behavior Therapy for Tic Disorders: An evidenced-based review and new directions for treatment research. Current developmental Disorders Report 2(4), 309-317.

Woods, D.W., Piacentini, J.C., Scahill, L., Peterson, A.L., Wilhelm, S., Chang, S., Deckersbach, T., McGuire, J., Specht, M., Conelea, C.A., Rozenman, M., Dzuria, J., Liu, H., Levi-Pearl, S., & Walkup, J.T. (2011). Behavior therapy for tics in children: acute and long-term effects on psychiatric and psychosocial functioning. Journal of Child Neurology, 26, 858-865.

Tourettes Action would like to thank Dr Cara Verdellen, clinical psychologist, for answering this question.


Ask the experts: cause and prognosis

Why does TS persist into adulthood for some people?

It is estimated, based on the literature, that tics remit in a majority (59-80%) of patients with TS once they reach adulthood. (Hassan, Cavanna 2012) This begs several questions.

How do we define remission? Does this mean no tics at all, or just very few which do not interfere significantly with quality of life?

In a paper published 2003 (Pappert et al.), patients who considered themselves tic-free were filmed on video; the vast majority still had tics but were unaware of them. In my book, that is still a remission, even if technically, this can be debated.

Do the majority of patients with TS remit?
The literature to that effect is not very recent and does not include large numbers of subjects It would certainly be worth conducting a fresh longitudinal study in several hundred if not thousands of patients. In the mean-time, my clinical impression is that a large number of my patients indeed improve significantly when they reach adulthood. However, I couldn't say with confidence that it is more than 50%. It must be considered that many patients fall out of the system and are not followed up. Also it cannot be excluded that tics may return after a few years, for instance after stressful or traumatic life events such as divorce or job loss.

The true question is not so much why tics persist in adulthood but rather the opposite: why do some patients improve spontaneously? There are a few hypotheses to that effect but no proof to date. Understanding the mechanism(s) that underlies remission or at least significant tic improvement would be crucial for prognosis and treatment.

Tourettes Action would like to thank Dr Andreas Hartmann, for answering this question. Dr Hartmann currently works at the Department of Neurology, Assistance Publique Hôpitaux de Paris


Hassan N1, Cavanna AE. The prognosis of Tourette syndrome: implications for clinical practice. Funct Neurol. 2012 Jan-Mar;27(1):23-7.
Pappert EJ1, Goetz CG, Louis ED, Blasucci L, Leurgans S. Objective assessments of longitudinal outcome in Gilles de la Tourette's syndrome. Neurology. 2003 Oct 14;61(7):936-40.

Can TS start in adulthood?

This an interesting question and often comes up. The rule of onset before 18 years is not hard and fast. DSM5 has the strictest definition and stipulates onset before 18 years for any primary tic disorder. ICD11 however stipulates ‘onset during the developmental period’ without and exact age and then only for Tourette’s syndrome, not for other primary tic disorders. In addition, the Tourette Syndrome Classification Study Group (1993) defined tic disorders as starting before 21 years.

Clinicians recognise that tics can (uncommonly) develop after 18 years of age and there have been several case series reported. Often there is a history of mild tics, compulsive behaviours or OCD in childhood which have not been very prominent and are only elicited by close questioning of the person or a parent if available. Others may give a history of OCD or tics in family members. However a minority have no obvious explanation except having undergone a stressful period, yet are recognised as a primary tic disorder by their clinician.

Tourette’s syndrome is highly heritable, that is there is a genetic predisposition. No one specific gene has been identified however. There are likely to be many genes conferring risk – a so called polygenic pattern of inheritance.  In addition several environmental risk factors have been identified for the development of tics. It is likely, like many other neurodevelopmental disorders, that the risk of developing Tourette’s syndrome is conferred by an interaction between the genetic endowment (e.g number of risk genes) and environmental factors.

However the fact that Tourette’s is heritable does not mean the onset needs to be in childhood. As a rule of thumb in neurodevelopmental disorders, the more genes inherited the earlier the age of onset. Take the case of schizophrenia as an illustration. This is a highly heritable disorder and also has environmental risk factors but the average age of onset is between 16 and 25 years and later onset cases throughout the adult age range are well recognised.       

For interest, the most recent review of this topic was in 2017 by Robakis from Yale University (published in Tremor and other Hyperkinetic Disorders doi: 10.7916/D8SQ95ND).  

Tourettes Action would like to thank Professor Eileen Joyce for answering this question. 

My daughter was diagnosed with Tourettes as she approached the age of 12. I was told by doctors that puberty triggered it, one doctor says she could out-grow it and one says she won't, what do you think?

It is very common for Tourette Syndrome to worsen around the period of puberty. In some cases, this worsening may be such that patients and families feel that the condition began to impact on daily functioning and quality of life only during this period. There is no good evidence of a relationship between the time at which Tourettes peaks in severity during childhood/adolescence and the likelihood of substantial clinical improvement entering adulthood. Regardless of when Tourettes starts or peaks, there is always a possibility that tics might improve so much towards the end of the teen years, to stop requiring medical surveillance.

Most of the evidence suggests that at least some tics may persist in adulthood in more than 80% of patients; however, the probability that these persisting tics will continue requiring medical surveillance is around 40%. We still know little of what can help us predict whether tics will improve substantially in adult life. It appears that the more severe and disabling tics are around puberty or in adolescence, the more likely it is for them to persist in adulthood.

Tourettes Action would like to thank Dr Davide Martino for answering this question. Dr Martino is a Neurologist at The University of Calgary, Canada.

A research paper published in October 2018 looking at the long-term outcomes of people with Tourette Syndrome, concludes that the findings reflect a positive overall long-term prognosis for individuals with TS.

Is there definitive proof TS is genetic? While some families have multiple people affected with TS, other families have only one member affected. What is the evidence that it is genetic?

As a scientist, I typically do not use the word "proof." Personally, I believe that term should be reserved for mathematicians. However, using what we have learned over the years from various genetic epidemiology studies, evidence strongly suggests a genetic contribution causing TS and other chronic tics disorders. These studies also suggest a biological relationship between TS and certain comorbid neuropsychiatric disorders. Environmental factors, such as prenatal and perinatal complications may also increase the risk for TS, either on their own or in combination with genetic factors.

Through many years and in various populations, family studies have consistently shown that TS is familial and that other chronic tic disorders seem biologically related. Compared with the general population or relatives of individuals without TS (controls), the relatives of individuals with TS also have higher rates of TS and they also have higher rates of other chronic tic disorders. Family studies have also shown that other neuropsychiatric disorders including obsessive-compulsive disorder (OCD), ADHD, and autism spectrum disorders (ASD) are increased in the relatives of individuals with TS, suggesting that a shared genetic relationship could exist.

Twin studies are conducted to disentangle the genetic and non-genetic factors which cause a disorder. In twin studies, the presence of the same disorder in both members of the twin pair (also called concordance) is assessed. A disorder with a genetic component would be expected to exhibit a higher concordance in identical twins than in fraternal (non-identical) twins. In TS and other chronic tic disorders, only a few twin studies have been conducted and all support a genetic contribution causing these disorders. Twin studies have also suggested a shared genetic etiology (cause) between TS and OCD, but the relationship between TS and ADHD and/or ASD is less clear.

Molecular studies are conducted to determine where the gene(s) that increase risk for the disorder are located within the genome. There are different types of molecular studies and each has a specific underlying hypothesis as to the genetic architecture causing the disorder. Some studies hypothesize that a large number of common variants (changes in the DNA), each with a small risk, act in concert to cause the disorder. Other types of molecular studies search for rare variants in genes that can separately cause the disease. While research has consistently demonstrated a significant genetic contribution, the role of genes in TS, is currently not well understood.

Two recent articles show significant progress in understanding the genetic causes of TS. The first of these was published on May 3rd, 2017, by Willsey and colleagues (see press release: http://tic-genetics.org/images/Documents/PressRelease.pdf). They purposely selected "simplex" families in which the child had TS and the parents did not. They were trying to find new mutations that are not inherited from parents, but rather occur spontaneously in a particular egg or sperm or at conception. While TS is often inherited (passing from parent to child) as a consequence of pre-existing mutant gene(s), in some cases it might result from newly mutated genes which could subsequently be passed on to the next generation.

This study found that the rate of new, damaging mutations was higher in children with TS than in children without TS. They also found four damaged genes (WWC1, CELSR3, NIPBL, and FN1) in multiple unrelated families that likely cause TS in these patients. Using the number of new mutations from this study, they estimated that approximately 12 percent of TS cases likely involve new mutations, and that these variants probably strike about 400 different risk genes. Thus, in some families, you might see only one person with the disorder, but in other families there could be multiple individuals with the disorder. This study included a main set of families collected by the Tourette International Collaborative Genetics Study (TIC Genetics: http://tic-genetics.org/) and a replication sample from the Tourette Syndrome Association International Consortium for Genetics (TSAICG: https://www.findtsgene.org). TIC Genetics is a collaboration between Rutgers University, the University of California San Francisco and other universities in the US, Europe and South Korea. The study has been supported by grants from the New Jersey Center for Tourette Syndrome (NJCTS: https://njcts.org/) and a grant from the National Institute of Health's (NIH) National Institute of Mental Health.

On June 21st, 2017, Huang and colleagues published an article describing a different kind of mutation in TS. Instead of a single gene DNA mutation, as in the previous study, they looked for DNA structural variants. Structural variants involve deletions or duplications of relatively large sections of DNA and are called copy number variants (CNVs). In this second study they found a higher occurrence of CNVs in TS cases compared to controls. They also observed two genes, NRXN1 and CNTN6, to be frequent within the CNV sections. Previous studies also found CNVs in NRXN1 and both NRXN1 and CNTN6 have been previously associated with ASD. Data from this study included individuals collected by TSAICG and the Gilles de la Tourette Syndrome GWAS Replication Initiative (GGR) and funding from TAA and NIH.

Genetic studies show that TS is not due to mutations of one gene like sickle cell anemia or cystic fibrosis. Instead, TS is the result of mutations in different genes that result in similar symptoms. This means that the cause of TS in one family is likely to be different from the cause in another family. So, testing individuals to determine if they have a TS-risk mutation will be complicated. However, these genetic factors likely work within a smaller number of biological pathways in the brain. As we find more of these TS-risk genes, we can determine how these genes interact in biological pathways during brain development and within the adult brain. After such TS pathways are identified, it may be possible to develop drugs that correct the malfunctioning pathways, thus alleviating symptoms. A number of large collaborative international efforts are underway including:

Tourette International Collaborative Genetics (TIC Genetics)

European Multicentre Tics in Children Studies (EMTICS)

COST Action European Network for the Study of GTS

Tourette Syndrome Genetics The Southern and Eastern Europe Initiative (TSGeneSEE)

Tourette Syndrome Association International Consortium for Genetics (TSAICG)

Many more samples are needed to foster innovative studies utilizing emerging technologies to understand the genetic architecture of TS and hopefully, design better treatments. Please consider participating!

Tourettes Action would like to thank Gary A. Heiman, PhD for answering this question. Gary Heiman works at the Department of Genetics, Rutgers, The State University of New Jersey.


Ask the experts: co-occurring conditions

Is there any evidence or research that could link TS with speech impediments (e.g. stammering)?

There is some evidence that people who have tics are more likely to have some difficulties with speech, for example, with the flow of speech or with stammering. There have been a few studies looking into how many people with TS are likely to have speech problems and it's been found that approximately 10% of people with tics have some kind of speech difficulty (or 1 in 10). What we know less about is whether or not these speech difficulties have caused a problem for that person. If you feel that you or your child have a difficulty with speech that is affecting your life in some way, then it would be a good idea to talk to a teacher or GP to see if this can be assessed in more detail and whether there is any support that can be offered.

Burd, L. (2014). Language and Speech in Tourette Syndrome: Phenotype and Phenomenology. Current Developmental Disorders Reports 1 (4), pp 229–235

Tourettes Action would like to thank Tamsin Owen, clinical psychologist, for answering this question.

Read our 'spotlight on Speech and Language Therapy' for further information about this TS and speech and language difficulties.


Ask the experts: medications

With CBD now a recognised medicine do you think the NHS will start to consider using it instead of other meds with far less beneficial advantages?

Medical cannabinoids are not yet a proven treatment for Tourette syndrome, although there is ongoing research on this in Germany and the US. In the NHS they can be prescribed only with a special application in the case of Tourettes. Whilst the available medication vary in how effective they are in each person, there is no evidence to suggest that cannibinoids are better, so there is not current justification for first line use.

In the Cannabis Scheduling Review Part 1, reviewing recent evidence of the therapeutic and medicinal benefits of cannabis based product (Department of Health and Social Care, 2018), there is limited evidence (supportive findings from fair-quality studies or mixed findings with most favouring one conclusion) that cannabis or cannabinoids are effective for improving symptoms of Tourette syndrome (THC capsules).

Tourettes Action would like to thank Dr Jeremy Strern, neurologist and Tourettes Action's medical director, for answering this question.

Is there any improvement in the medication available via the NHS for people with TS? Side effects often outweigh any good effects.

Medications for Tourette syndrome vary in their effectiveness from patient to patient. Whilst some drugs are available in certain countries and not others, the NHS is not the limiting factor in providing effective treatment to everyone who needs it (apart from the inadequate psychology resources). It is true that side effects can outweigh good effects, but in many people that is fortunately not the case. Drug companies do not design drugs for TS, we use medications that were introduced for other medical conditions. Increasing scientific knowledge of Tourettes may allow a more targeted drug to be investigated in future, but that is not possible to predict at this point.

Tourettes Action would like to thank Dr Jeremy Strern, neurologist and Tourettes Action's medical director, for answering this question.

For more information on medication and TS please visit our webpage

I have come off of my medication for my tics, I've been on them for 5 years. I've noticed I'm ticcing a lot more, but I knew that this would happen. What do I do when they get bad, (I have days where my vocal tics won't shut up) and also what do I do when I'm "out and about" (mainly when I am on my own) and people are staring at me, and making comments.

It sounds like you felt better on medication- so maybe there were some complications to do with side effects. It could be worth reconsidering if you want to be on medication again which could include trying alternative options, although unfortunately beneficial responses (and side effects) vary from person to person. Another method of treatment that may be suitable are the specialised cognitive behavioural techniques such as Comprehensive Behavioural Interventions for Tics (CBIT). Specialised psychologists who can deliver this can be hard to access but Tourettes Action has a list, including many who have come to our training courses. Dealing with people who are staring or making comments is very personal, only people who know you better can help with this. One strategy is to explain your Tourette syndrome. This will not always work or be appropriate, but can be useful. A Tourettes Action identity card can be a helpful prop to increase confidence in doing this.

Tourettes Action would like to thank Dr Jeremy Strern, neurologist and Tourettes Action's medical director, for answering this question.

Visit our section "Find Support" for more information on the support services provided by Tourettes Action.


Ask the experts: NHS treatment and care

Why are there no NICE guidelines for Tourette Syndrome?

This is a very good question. First, let's define what NICE stands for. NICE is the National Institute for Health and Care Excellence. It is a body of knowledge compiled by experts, service users, carers and the public, which recommends the appropriate treatment and care of people with diseases and conditions within the NHS in England and Wales. The guidelines are developed by gathering high quality research studies and then shaping them through feedback from service users and relevant organisations to ensure they are as relevant as possible. There is also a focus in the NICE guidelines on ensuring that recommended treatments are both clinically effective and also cost effective. Helpfully, the NICE guidelines are checked and revised every few years, taking into consideration any new research evidence that has become available.

Although guidelines for some conditions which often co-occur with Tourette syndrome, such as Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD), have been available for years, to date, we still do not have NICE guidelines for tic disorders, including Tourette syndrome (TS). This is a great shame but mirrors the fact that there is less research funded and carried out in Tourette syndrome than other neurodevelopmental conditions.

What do we need to do to get some NICE guidelines created for Tourette Syndrome?

Having said this, there have been several initiatives which suggest that we may well see NICE guidelines for TS in the forthcoming years. In 2012, the Health Technology Association (HTA) funded a systematic review of treatments for Tourette syndrome in children. This huge undertaking gave rise to a publication in a well-read journal, a summary of which is available online In addition, we have guidelines from Europe, and North America (Canada and the United States) on Tourette syndrome which set out how best to diagnose and treat people who have the condition. These sorts of publication give health professionals and the public a sense of what "best practice" might be without having to read the whole scientific literature.

More recently, the HTA has funded a large study of behavioural treatments for children with tic disorders (called ORBIT), which is being run at Great Ormond Street Hospital in collaboration with the University of Nottingham and the Karolinska Institute in Sweden, which is likely be the largest treatment study to date. You can read more about the ORBIT study here:

How might NICE Guidelines for Tourette Syndrome affect care? What difference would this make?

NICE guidelines for TS will provide benefits for all; patients, carers, healthcare professionals and organisations. For example, it could work towards ensuring that patients receive care in line with the best available evidence. The guidelines enable people to know how they can be cared for in a consistent way, building patients' confidence in NHS and social care services. Guidelines might mean improved standards of clinical assessment and treatment which will ultimately mean better outcomes for everyday functioning and emotional well-being.

NICE guidelines would also raise awareness among professionals around clinical issues. For example, in the NICE Guidelines for ADHD (published in 2011), the guidelines raised awareness of the likelihood that individuals already being seen in clinical settings may also have co-occurring symptoms such as hyperactivity, impulsivity and inattention. By showing how common ADHD is in people who attend clinics, the guidelines have helped to raise awareness of co-occurring conditions, such as ADHD and autism, which ultimately means early identification, diagnosis and treatment. It would be the case that NICE guidelines for TS would help children and young adults also get the diagnosis and treatments they are looking for, but also ensure that clinical standards for the assessment and treatment is carried out in a similar way across the country.

 

What do we need to do to get NICE guidelines created for Tourette Syndrome?

It is hoped that with all the research being carried out, including those funded by the National Institute of Health Research, that the development of NICE guidelines for TS is not far away. It is important that the challenges that people with Tourette Syndrome face continues to be captured and acknowledged by organisations, the health care system and within the media. This will ensure that guidelines are developed in a timely manner. Charities such as Tourettes Action also have a large part to play in championing NICE guidelines for Tourette Syndrome along with specialist clinics. Watch this space!

Tourettes Action would like to thank Dr Tara Murphy, consultant clinical psychologist, for answering this question.

I was diagnosed as an adult and had to see many mental health professionals including psychiatrists to receive a diagnosis. This seems a poor use of resources. Is there a better way to manage the process?

This is a common and difficult problem. There are very few dedicated services for adults with Tourette Syndrome and, for all but one of them, they are restricted to catchment areas (funding needs to be agreed by local funders (CCGs) for people attending from outside the catchment area). In addition, because the symptoms of Tourette Syndrome have neurological and psychiatric components, GPs often do not know the best route of referral. In my experience adults are most often referred to neurologists who can rule out secondary cause of tics or other neurological problems that resemble tics. It is unusual for the first port of call to be a psychiatrist.

Tourettes Action would like to thank Professor Eileen Joyce for answering this question. Professor Joyce is a neuropsychiatrist based in London.

Please visit our information sheet "spotlight on psychiatrists" for further insight into how psychiatrists can support someone living with TS.

Why are GP's not better educated to prescribe for TS?

Although Tourette Syndrome is relatively common if we include all mild cases, people that need prescriptions to help tics are relatively rare. Most GP's would not have a patient being prescribed medication for this reason. It is not possible for GP's to educate themselves on every medical condition, there is a great breadth of medical practice they need to provide. There will always be a role for specialist services in assessing and treating the Tourettes (not just the tics). Tourettes Action would like to see this widened so that super-specialists are not so necessary. If local psychiatrists and neurologists for children and adults were able to give advice more consistently then it would be easier to access services without waiting to see a specialist further away from home.

Tourettes Action would like to thank Dr Jeremy Strern, neurologist and Tourettes Action's medical director, for answering this question.

You might be interested to read our ask the expert question: "why are there no NICE guidelines for TS?"


 

 

 

 

 

 

 

 

 

 

 


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