Home Society & Culture Creating a Pan-European Tic and Tourette Syndrome Patient Umbrella Association – During a Pandemic

Creating a Pan-European Tic and Tourette Syndrome Patient Umbrella Association – During a Pandemic

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What a wonderfully positive year we had last year. Feels weird saying that, but in regards to our small enterprise (with big dreams) we made more progress in the 12 months of 2020 than in the last 10 years. Who are we? We are a group of people representing tics and Tourette syndrome (TS) patient associations from across Europe (and in fact the world). Across Europe some, but not all, countries have a patient support association to provide information and support (and much more, but more on that later) to people who want to find out more about tics – could be patients, families, teachers, employers, healthcare professionals – basically anyone.

If you are interested in discovering whether there is a tic & TS patient support organisation in your own country, you can check out the newly created Directory of Tourette Syndrome Patient Associations.

Firstly let’s give an introduction to what tics and Tourette syndrome is and then why this international group of people are collaborating together in a never-before-seen (in the world of TS) effort to form a bigger association.

What are Tourette syndrome and tic disorders?

First of all, what is a tic? Tics are involuntary and uncontrollable sounds and movements (for example, eye blinking, eye, nose or mouth movements, facial grimaces) or vocalisation (sounds like coughing, throat clearing, sniffing but also words and sentences). We hear you thinking: ‘coughing, Seonthroat clearing, sniffing … during a pandemic … awkward’. Yes, and more on that later. Tics can be simple or complex, big or small, and are a common part of childhood. Where tics persist for a while and are more and more difficult to deal with someone may get a diagnosis of chronic tic disorder (CTD) or Tourette syndrome (TS). 80% of patients with TS will also experience co-occurring features and conditions, such as attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) but also depression, anxiety, rage and self-harm.

What they are not?

There are misunderstandings about what TS is and isn’t – one of them is about coprolalia which is the clinical term for tics that produce socially unacceptable words (usually swearing), and only approximately 15–20% of people with TS have this symptom. So you can unlink the idea of swearing from Tourette syndrome straight away.

Rare? We don’t think so

It is just to be assumed that TS was rare, but recently it has come to be accepted that the prevalence is the same as autism at 1% (that would be 1 in a 100 schoolchildren).  

What are we up to?

As a group of representatives from patient associations in different countries (unpaid volunteers) – why do we care about making a larger organisation? Do we not have enough to do? Rhetorical question – yes we have plenty to do, but we feel there are huge advantages to us coming together: 

  1. By joining together we have a larger voice for patients who have tics and TS, therefore raising awareness and understanding.
  2. As a European association, we can apply for funding which will help our organisation grow and advocate on behalf of people with tics and TS for their rights to have equal access to diagnosis and treatment.
  3. We can serve as a platform for our member organisations to share information and collaborate on research to help the European community. 
  4. We hope to influence policymakers and legislators in the EU, to prioritise resource allocation to reduce the burden for people living with TS & tic disorders. 
  5. We wish to establish strong partnerships and alliances with relevant stakeholders in the scientific, clinical, political, and corporate arenas to help us to reach our goals and work.
  6. We can create a conversation about what research priorities TS patients think are important, what support and help can be given which would improve the quality of the lives of people with tics and TS and their families. 
  7. By coming together we can create European-wide initiatives to help bridge the divide between researchers, clinicians, and patients. We can build up networks of clinicians and signpost patients to them. We can provide help and support to researchers looking for research participants – we can create a network of contacts which will help the researchers fulfil their patients and public involvement (PPI) requirements and increase their successful grant funding. We can act as a PPI group by reading research proposals and providing feedback from a patient’s perspective to researchers. 

Where did this all come from?

Since 2008, the European Society for the Study of Tourette Syndrome (ESSTS) has organised annual meetings to coordinate pan-European efforts for the study of Tourette syndrome (TS). These meetings provide a platform for global outreach and educational activities. As part of the annual meeting, representatives of patients associations from Europe and worldwide are invited to attend. 

So that’s where we meet – but once a year isn’t enough for us.

The goals of the ESSTS association is to understand the prevalence and impact of TS and find effective treatments for TS and to help stimulate worldwide collaboration in research. ESSTS has fostered the establishment of the European-wide network of TS support associations. In these challenging times, we have stopped meeting in person and instead are having monthly virtual meetings and working groups whose aim is to form a European umbrella organisation as well as increase collaboration between patients associations, researchers and clinicians. 

We’ve gone kind-of-digital

As well as now having monthly meetings and working groups online, we have been creating our mission statement, membership outlines, and all we need to become an ‘entity’. With our Zoom meetings accompanied by us communicating on Facebook, Slack, Google Drive, and Twitter (@IntlTSpatient), this makes sense and not just because of the pandemic. As there are so many countries involved in this initiative, then it makes sense to be online instead of attempting to meet face-to-face which is always expensive. We also have people from Australia, New Zealand, and Iceland who are lending their support to our work. Exciting stuff! 

This builds on our work of the past few years where we produced a leaflet ‘Guidelines for patient’s participation in research’. The patient representatives group also were invited to create a ‘patient statement’ for the updated version of the European Guidelines on the Treatment and Management of Tourette Syndrome. This was seen as a big step forward in terms of collaboration with patient’s voices being included, to be published in 2021. 

We already mentioned the directory of TS patient associations from around the world. This has been hosted on the ESSTS website as well as an interactive online form which allows associations to update their details or also when new associations form they can add their details to the directory. 

What we achieved this year

As one of the most stigmatised medical conditions, patients around the world with TS and other tic disorders continue to face daily stigmatisation, lack of understanding, and often difficulty accessing basic health services such as diagnosis and treatment. 

We believe together as a uniting voice of different patient groups across countries we can create real change by improving the quality of life of people with tics and TS and ensure their rights and equal opportunities to healthcare. We want people with tics and TS to achieve their full potential and can also contribute to the well-being of their community and wider society. 

Why should others care?  

If you are an already well-established tics and TS patient association in your own country then you will get a massive feel-good factor to joining us, helping us to create this European association – your expertise will be appreciated and we can work together to secure money for joint projects. We would love to have funding to help patient representatives attend the yearly ESSTS conference, for example. For those patient associations just starting out or countries who don’t have one yet – we are here to help and guide you.

Follow us on Twitter @IntlTSpatient and if you wish to join in our growing group of patient representatives, researchers, and individuals around the world, just send an email to paula.huttunen@gmail.com and you will be sent instructions on how to join the group and keep up with the work we do. 

Dr Seonaid Anderson is a chartered psychologist and freelance neurodiversity consultant. She tweets  @Seonaidanderso2

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