Dr Seonaid Anderson, research manager for Tourettes Action, said that the average wait for diagnosis from when people have first noticed symptoms has been between one and two years, but some have waited for up to six years.
Dr Anderson added that the issue of pain and discomfort is also an area that has been overlooked.
"It was really quite shocking to discover that this was really quite chronic pain on a daily basis and their repetitive tics were causing them lots of problems in their day-to-day living," she says.
"For other movement disorders, there is perhaps more of an input in terms of helping them manage their pain.
"It seems to be an area that's lacking, you've got Tourette's syndrome and this pain or discomfort is just something you have to live with".
A Department of Health and Social Care spokesperson said it was committed to supporting people with neurological conditions such as Tourette's.
"The NHS long-term plan sets out our intention to improve choice and personalised care for people with long term conditions, as well as to support local areas to tackle unwarranted variation in services".
Guest Panelist, 12 August 2020
Guest Panelist, 12 August 2020
In this podcast, Dr Seonaid Anderson and Helen Eadie, of Tourettes Action, define Tourettes Syndrome and expand on its impact. Together with Jo Carlowe, psychology journalist, they explore the next steps for raising identification, awareness, and positive outcomes.
Introduction - what we already know - treatment - areas of uncertainty - What's in the pipeline?
Read more
Contributing author: “Barriers to improving access to therapy treatment for tics in the UK”
Download PDF
I have been part of a team of people who have produced ananimation with Woven Ink, educational professionals, charity representatives,researchers and lived experience advocates including Paul Stevenson, EmmaMcNally, Marie Ralph, Dr Seonaid Anderson, Daniel Jones and Dr JenniferSalvage.
We are immensely proud of this coproduced piece of work,which we have dedicated to those with tics who have lost their lives tosuicide.
Our aim is to share this video widely to persuade thosedecision and policy makers to support us in making changes to healthcareguidelines for Tourette Syndrome.
We want as many people as possibleto share the videos on Facebook, Twitter, Instagram, LinkedIn and TikTok usingthe hashtag #TourettesHearUs
We are also asking for people totag in their MP and other people local to them who can bring about changewithin the NHS.
We are hoping this animation mayhelp us be heard if we all come together, so any help is much appreciated
Please share with others in the TScommunity
Animated video describing the clinical pathways for assessment, diagnosis and treatment for Tourette syndrome in UK.
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