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‘I Had To Pay For Tourette’s Diagnosis’

January 28, 2022

A teenager who developed Tourette’s syndrome in lockdown was forced to pay for a diagnosis after months of trying to get help through the NHS.

Edie Pilkington, 16, from Bradford, began to get physical twitches such as neck jerks before vocal tics appeared.

Mum Amy said attempts to get help felt like “banging your head against a wall” and they ended up seeing a consultant privately.

The government said it had increased funding for mental health services.

Edie said her symptoms had escalated to the point where she could have “an overload”.

“It’s just so tiring,” she said.

“My body feels exhausted, my neck aches like hell. My throat sometimes hurts when I do have verbal ones, like grunts… physical, they do end up leaving marks.

“That might be what I have to deal with for the rest of my life.”

Seeing her daughter “exhausted”, her mother Amy called her GP, who “referred me to paediatrics initially, as they were confused as to what area to send me to”.

“The paediatrician said to Edie: ‘Don’t worry you’ll grow out of it’, but she was already 15,” she said.

Mrs Pilkington said Edie had lost friends because of the tics, as she stopped wanting to join in activities with them.

Last November, she contacted MP Judith Cummins, who wrote to Bradford District and Craven Clinical Commissioning Group, which is responsible for local NHS services.

It acknowledged there were “gaps in our service and provision” for and promised to escalate the issue.

However, the family was still unable to get help and Mrs Pilkington said said she felt like she was “hitting a wall”.

In December, Edie and her mum travelled to a clinic in Elstree, Hertfordshire, to see Dr Inyang Takon, one of only a few consultants in England who specialise in tic disorders and Tourette’s.

Dr Takon prescribed medication for Edie to reduce the tics because of the injury risk they posed.

“We have seen a lot more children coming in [with tics] during this pandemic period, so we really need to understand what’s going on,” she said.

“This can only be done when you have a service and when you can do research on the children who are presenting.

“There are very limited services around the country to address this need. The government needs to do something about this urgently.

“It’s not just one person, there are many, many more who can’t afford to pay for this service who need it.”

This is backed up by Tourette’s Action, which said specialist clinics have seen an increase in cases, particularly in young women.

The charity’s medical director, consultant neurologist Dr Jeremy Stern, said the lack of services was a “national problem” and the system in place was “not fair or fit for purpose”.

“People can’t necessarily get a diagnosis and very often can’t get the treatment which we know can help them,” he said.

“It’s a problem Tourette’s Action is very concerned about and we would like to campaign further to try and help this problem.

“I cannot say this is a satisfactory situation at this moment.”

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Tourette’s Syndrome

  • A condition characterised by involuntary sounds and movements, or tics
  • Usually appears during childhood; six years old is the average age
  • The cause is unknown but it can sometimes be diagnosed alongside ADHD, obsessive compulsive disorder, or learning difficulties
  • It is rarely harmful to someone’s overall health but physical tics can be painful
  • There is no cure for Tourette’s but it can be managed with medicine and behavioural therapies

Source: NHS

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Since her diagnosis, Edie said she feels “relieved and less stressed and less awkward”.

“Now I can give a straightforward answer and be more comfortable and calm,” she said.

Mrs Pilkington added: “Hopefully she can now settle down into the new version of her.”

A Department for Health and Social Care spokesperson said: “We are absolutely committed to supporting the wellbeing of children and young people with Tourette’s syndrome and other tic disorders.

“The majority of services for people with Tourette’s syndrome are commissioned locally by Clinical Commissioning Groups, through either paediatric services or Child and Adolescent Mental Health Services (CAMHS).

“Early support and treatment is vital, and we are providing the largest mental health funding in NHS history through an extra £2.3bn a year to mental health services such as CAMHS by 2024.”

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