Video report by ITV News Correspondent Rachel Younger
Children with Tourette's Syndrome and tic disorders are being "totally neglected" with a failure to provide even the most basic services in some areas of England and Wales, according to a leading NHS doctor.
ITV News found almost a third of children referred to CAMHS (Child and Adolescent Mental Health Service) with the condition were told there was no help available.
We spoke to 633 families of youngsters with Tic disorders or Tourette's. 70% told us they had been sent to CAMHS, which deals with children and adolescents’ mental health, for diagnosis and treatment.
But fewer than 30% of those families reported getting any help at all, with some on waiting lists for over a year. 32% were informed there was no support available.
Many parents are desperate. It has been six years since 11-year-old Danny Dawson was diagnosed with Tourettes. But without the right treatment he’s endured years of bullying and pain from his tics, one of which causes him to throw his neck back violently.
Danny explains what it is like to have a tic that is painful at the back of his neck
His mother finally found a specialist therapy centre at Queen’s Medical Centre in Nottingham. But it has taken an 18-month battle to get Danny seen there.
Professor Chris Hollis runs the unit and says it's one of only a handful in the country, despite Tourettes affecting around 70,000 children in the UK.
Some experience motor tics so difficult to control they have to use wheelchairs. Others inadvertently self harm by repeatedly banging their heads against walls.
Professor Hollis describes it as a postcode lottery, telling me: "I think they are being totally neglected in the provision of basic services."
"If you are in Lincolnshire for example, there are no services for young people with tics and Tourettes and that is replicated in other parts of the country which is not how it should be."
He also said children are falling through the gaps between mental health and neurological services and many are being denied treatment because of a lack of training, awareness and provision.
Over the past 12 months, the number of referrals to Queen’s Medical Centre has spiked by 50%, with many children experiencing worsening symptoms since the pandemic began.
But for some, even a place on a waiting list remains out of reach.
ITV News has asked the government for a response to our figures showing the scale of the problem, but the Department of Health and Social Care declined to comment.
Who can I or someone I know contact for help:
Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families. They want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full. Their helpline is 0300 777 8427.
NHS Choices has comprehensive help & information from NHS Choices including links to external sites.
Tourettes Hero is a place to celebrate the humour & creativity of Tourettes. It’s not about mocking or commiserating - it’s about reclaiming the most frequently misunderstood syndrome on the planet.
Tourette Scotland provides information, advice and support for children and adults with TS. Their helpline is 0300 111 1462.