Parents battling for support for ‘misunderstood’ Tourette’s syndrome

Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements called tics.

Unfortunately, there is no cure for it but treatment can help to manage symptoms.

Mum-of-two Emma McNally, from St Helens, set up an online petition to Parliament and Government calling for an increase in funding to provide support and research into Tourette’s. It now has more than 11,200 signatures.

The Government responds to all petitions that get more than 10,000 signatures, while they are considered for a debate in Parliament if they pass 100,000 signatures.

Emma’s son, aged 12, has Tourette’s syndrome.

She said: “Currently, there is no pathway to diagnosis and no ongoing support for Tourette’s patients in the north west of England. Children are left with no care and nowhere to turn.

“Prior to March 2020, most children in the north west with Tourette’s were treated at Alder Hey Hospital by a neurologist there.

“But when he retired in March all patients were discharged on mass leaving them with nowhere to turn.

“We are trying to urge anyone to sign the petition to help not only local children but children all over the UK.

“We are parents fighting not only for our own child but all the other children out there.”

Emma emphasised that Tourette’s is a very misunderstood condition.

“The general public think it is a few sounds and movements and what’s the big deal but it is so much more,” she said.

“It can be extremely painful for the individual, the continual movements cause extreme pain but this doesn’t stop the tics, they continue throughout the pain, making it worse and worse.

“They can be dangerous, often putting the child at harm. They can be extremely embarrassing for the child, causing them to suffer with social exclusion and anxiety.

“They interfere with every day things that others take for granted such as sleeping, writing, showering, walking, school work.

“Imagine being a child and coping with all this and yet having no one medically to help.”

The NHS says the cause of Tourette’s syndrome is unknown, with it thought to be linked to a part of the brain that helps regulate body movements.

Emma said: “The figures reveal that Tourette’s affects 1 in 100 children, I believe this figure to be much higher as lots of children are going undiagnosed or misdiagnosed.

“If the medical care doesn’t improve, this means that 1 in 100 children are being failed by the NHS.

“The ideal situation is that we have a specialist Tourette’s centre in all major cities, which provide a multi-disciplinary approach and help with all aspects of Tourette’s.”

Mum-of-three Robyn Ablott’s eldest daughter was diagnosed with ADHD and sensory processing issues at around six years old.

She displayed mild tics like throat clearing, sniffing and excessive blinking since the age of about two years old.

However, these were dismissed by professionals as being linked to her ADHD until they began to progressively get worse at around age eight, where she began to repeat random words or phrases.

The family battled on their own until she turned 10 in January last year when she had an ‘explosion’ of physical and vocal tics, which included coprolalia. This involves repeating swear words and obscene phrases.

The coprolalia developed overnight and came as a huge shock to the family.

Finally, when things became a constant battle, a member of the team working in Child and Adolescent Mental Health Services (CAMHS) listened to how much the family were struggling and referred the youngster to Alder Hey Children’s Hospital – although they faced a nine-month waiting list.

Robyn, from Appleton, said: “The neurologist finally diagnosed Tourette’s and not transient tics disorder which is a different, more common condition associated with anxiety in children.

“Once the neurologist at Alder Hey gave us the diagnosis they then discharged her saying they currently had no pathway for support as they no longer have a specialist working there.

“We are now left with no support at all, trying to figure out the best way to help our daughter deal with the effects of her condition by ourselves.

“We do this by reading, researching, and seeking the support of other parents. We are currently looking for a private specialist to see her but it’s been difficult with Covid.

“Tics can wax and wane in severity. At worse, her vocal and physical tics are constant – unless she is attempting to suppress them when she feels embarrassed by them.

“She cannot suppress them for very long as it causes a huge amount of stress and irritation to build up and so these episodes are always followed by rage attacks afterwards.

“This usually happens once we are back home and feels comfortable to let her tics out.

“This is very hard to cope with at home and there is not one single person, outside our immediate family who will be able to comprehend what these episodes are like without seeing them first hand.”

But despite the difficulties facing the family, Robyn hailed a ‘wonderful’ Manchester-based support group on Facebook which has been set up by a parent.

She said the family ‘would be lost’ without the crucial support.

“The parent who set this group up also went into our daughter’s school to train the teachers in the condition and we are very lucky that our school have been so supportive as I know other parents have had battles with their own schools over understanding,” added Robyn.

“This, by far, is the most challenging thing we have ever had to get our heads around and not being able to put things right for her hurts my heart at times.

“I just wish there was a pathway for Tourette’s within CAMHS and support after a diagnosis. I know there is no cure for the Tourette’s, but just support in dealing with the day-to-day struggles associated with the condition would make the world of difference to our children.”

Two of Jane Graham’s children also have Tourette’s syndrome.

Jane, from Widnes, said: “For one it doesn’t impact on her life too much but for the other, Charlotte, it was life-changing as it suddenly became severe at 16, with constant vocal and physical tics and tic fits that resemble epileptic seizures.

“Her tics were uncontrollable – often impulsive and dangerous and she developed severe anxiety that made it difficult to leave the house.

“At 16 she was classed as neither a child nor adult for support through the local hospitals, so CAMHS was our only support but that was limited as they deal with mental health and had little or no experience of Tourette’s syndrome. I had to give up work to be her full-time carer.

“Through the general lack of understanding and education around Tourette’s we have found our greatest support is through support groups run voluntarily by people with Tourette’s syndrome and their families. Even medical professionals struggle to understand and know what to do, some even appearing sceptical about the condition.

“Charlotte, who is now 22, is lucky to have found a supportive neurologist at Salford Royal, but there are many, particularly children, who don’t have anyone to support them within the medical profession.

“There is also a lack of education in schools with many children getting punished for their tics which they cannot control.

“With anxiety, pain and bullying from their tics the last thing children need is to feel they are doing something bad or naughty when they have absolutely no control over it.

“These children and their families need support, understanding and compassion as living with Tourette’s is a constant battle that impacts everyone in the family.”

Furthermore, Chapelford resident Angela Morris also expressed concerns over the lack of care that she receives for her daughter Maisy who experiences ‘daily struggles’.

She said: “Maisy is a strong-willed enthusiastic 11 year old. She was diagnosed with Tourette’s aged nine.

“Maisy can’t sleep at night properly, it takes her hours to drift off to sleep as she jumps, shouts and just can’t relax.

“She gets bullied at times, people can stare and laugh. We receive no financial help, even though it’s a disability.

“It’s disgusting the way people with Tourette’s are treated, there’s no cure so it’s as though they have given up on us.

“More research is needed and more funding to help every child and adult suffering with Tourette’s syndrome.”

To sign the petition visit petition.parliament.uk/petitions/575370.