#TourettesWeMatter

There are over 300,000 children and adults living with tic disorders in the UK. Tics are usually lifelong, meaning that we need services for children, adolescents AND adults.

What’s the issue?

There are over 300,000 children and adults living with tic disorders in the UK. Tics are usually lifelong, meaning that we need services for children, adolescents and adults.

People often report problems with gaining a diagnosis and a timely treatment, often being passed from service to service and going round in a never ending cycle of appointments. People report they feel “let down and failed” and say they face “social inequality” and that “it’s unfair”.

Our CEO Emma McNally ran a survey in January 2020 which received 1034 responses. The survey showed that 56% of people who received a diagnosis waited longer than 1 year, 29% of people who received a diagnosis waited more than 2 years and 19% of people who received a diagnosis waited more than 3 years! A huge 52% of patients said they were diagnosed and then discharged at the same appointment and were provided with NO ongoing care.

The level of service provided for TS is shocking on a National level, it is however much worse outside of London. For example, a whopping 28% of patients in the North West waited longer than 3 years and the number of people who were discharged on the point of diagnosis, and offered no follow on care, was 61%.

What do Tourettes Action want?

We want everyone to be able to access a timely diagnosis and treatment regardless of where they live in the U.K. We are calling on the Government to ensure this happens. If the government are serious about 'Levelling Up' then they need to help address these issues and ensure that everyone can access medical care throughout the U.K.

How can you help?

Support our campaign by sending in your quotes and images

Join us in our campaign #TourettesWeMatter. Send us your photo and/or a quote of no more than 20 words explaining how you or your child has faced problems accessing medical care for TS.*

Please email your quote and photo to campaigns@tourettes-action.org.uk 

Write to your MP

We want MPs to support us in our fight for better services. We would like people to highlight the issues with their own MP. You can download one of our templates and add a few personal details before sending it to your MP. The more people that do this, the more likely we will see change #TogetherWeAreStronger 

It is a good idea if you copy in your local CCG, local ICB and parent carer forum / carers centre to the email.  This way all the decision makers are aware of the problems occurring local to you.

Find your MP here 

Find your CCG here

Find your ICB here

Find your carers centre here

We have the following templates available

• Template for adults with Tourette Syndrome 
• Template for parents / carers of a child who is awaiting a diagnosis 
• Template for parents / carers of a child who is diagnosed with Tourette Syndrome 
• Template for a family member or friend of someone with Tourette Syndrome 

*by sending in your photo and quote you are agreeing that we can share across social media and in our campaigning