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Family praises EPUT team for lifeline Tourette’s support

Specialist support helped a family manage their son’s severe tics, improving daily life and highlighting the need for greater awareness of Tourette syndrome.

picture of children smiling at the camera

Names in this story have been changed to protect identities.

As part of Tourette’s Syndrome Awareness Month, Essex Partnership University NHS Foundation Trust (EPUT) is highlighting the importance of specialist support, understanding and inclusion for children and young people living with tic disorders and Tourette syndrome.

‘’Sarah’, whose 12-year-old son ’Ben’ is currently awaiting a formal diagnosis of Tourette syndrome, has spoken about the life-changing impact specialist support from EPUT has had on their family during an incredibly challenging time.

Ben first began developing facial tics following a serious illness last autumn. Over time, the tics became more severe and progressed into complex motor and verbal tics, including coprolalia – involuntary verbal tics involving socially inappropriate or offensive words.

Sarah said: “We had a child with no additional needs going to secondary school in September and our world changed almost overnight. At first, we didn’t fully understand what was happening. Looking back, he’d had smaller tics on and off when he was younger, but nothing like this.”

As Ben’s condition escalated, everyday activities became difficult and, at times, unsafe.

“He went from being a completely independent boy to needing constant supervision,” Sarah explained. “Simple things like making a cup of tea, having a bath or concentrating on homework suddenly became really hard because of the tics.”

The family was referred to EPUT’s specialist Tic and Tourette’s service and Sarah described the support as “a lifeline”.

“The nurse specialist, Lindsey has been an absolute godsend for our family. Her guidance, compassion and support throughout this process have made a profound difference. She has supported us at home, attended school meetings, written reports and helped connect us with other families going through similar experiences.”

The support has also extended into Ben’s school life, helping staff better understand Tourette syndrome and how to support him in the classroom.

Although many pupils have been supportive, Sarah said there is still a lack of understanding around Tourette syndrome and tic disorders, particularly around verbal tics.

Sadly, Ben was recently assaulted at a football match after involuntarily shouting an offensive word as part of a tic episode.

“It was incredibly upsetting and it showed how important education and awareness really are,” Sarah said. “People need to understand these behaviours are involuntary. Young people with Tourette’s are not being rude or disruptive on purpose.”

Sarah also reflected on the recent attention Tourette syndrome has received following the BAFTA-recognised film I Swear.

“The film has helped start important conversations and reduce some stigma, but the coverage of the incident at the BAFTAs has also led to misunderstanding in some situations. Tourette’s has often been treated as something funny or strange in the past, but awareness and education can really make a difference.”

Despite the challenges, Sarah says Ben remains determined to continue enjoying school, friendships and football.

“He still wants to be with his friends and do the things other children his age do. His friends have been amazing and incredibly supportive.”

EPUT’s specialist team works closely with schools, families and partner organisations to help children and young people manage tics and access the support they need at home, in education and in the community. The service currently accepts referrals from patients in Southend, as well as Castle Point and Rochford.

Sarah is now encouraging other families facing similar experiences to seek support and speak openly about tic disorders.

“You are not alone,” she said. “Reach out for support, don’t be embarrassed and don’t be afraid to stand up for your child and what they need.”

She added: “The biggest thing I’d say to people is just be kind. Someone shouting things out or behaving differently may have a condition you know nothing about.

“Organisations and schools can also access free Tourette syndrome training provided by Tourettes Action. I think that’s a really valuable resource.”

About EPUT:

  • EPUT provides services to more than 100,000 patients at any one time and our staff are focused on providing high quality care in often complex situations.
  • The organisation has invested in inpatient facilities and community services to make them safer and more therapeutic. We have extensively invested in technology to keep patients safer, enhanced training, and are continuously working with our staff, patients, their families and carers to use learning and best practice to enhance our quality of care.
  • While there is more to do, the Trust has made significant progress through innovation:
    • Our 111 mental health crisis phone line ensures people in need can access support 24 hours a day, 365 days a year
    • People with lived experience have been employed in designated roles across the Trust, ensuring patient voice is heart of the organisation and all that we do.
    • A number of new initiatives have been launched, helping people access the support they need when they need it most. These include a mental health urgent care department, By Your Side maternal mental health service, Rough Sleeper team, mental health crisis ambulance cars, virtual wards and neuromodulation service.
  • EPUT was formed on 1 April 2017 and provides community health, mental health and learning disability services across Essex, Luton and Bedfordshire and Suffolk.  We employ more than 7,200 staff working across more than 200 sites.