St Helens Mum urges local people to support petition to improve Tourette's services

Emma McNally’s son was diagnosed with Tourette’s aged nine. The condition causes a person to make involuntary sounds and movements called tics.

Tourette’s affects 1 in 100 children and although there is no cure for the condition, medical treatment can help to manage symptoms.

For a few years, the McNally family were able get regular appointments, treatment and advice from a local specialist at Alder Hey hospital.

However, since he retired in March 2020, the family “haven’t had any care”.

Emma, a mum-of-two from St Helens, told the Star: “There’s no one in the North West who has got the skills to deal with Tourette’s.”

“This means that all the children in the North West are not able to get diagnosed and not able to get any treatment.”

After her experience, Emma decided to create an online petition to Parliament calling for an increase in funding to provide support and research into Tourette’s syndrome.

Emma McNally is urging local people to sign her petition

The petition currently has more than 32,000 signatures, yet a target of 100,000 is needed before August 16 to take the issue to debate in Parliament.

With just over a month until the deadline, Emma is calling on communities to get behind her petition.

She said: “We need local people to understand what a sad state of affairs this really is.

“It may not affect their child at the moment but one day it might [as] Tourette’s can come totally out of the blue”.

Emma explains that there are a specialist centres for Tourette’s across the UK, yet many of them only accept local referrals, or referrals from your local Children and Adolescent Mental Health Services (CAMHS).

However, as there is no one with specialist understanding of Tourette’s at St Helens CAMHS, Emma’s son – now aged 13 – was denied this, as well as being declined access to CAMHS support as Tourette’s does not come under their mental health remit.

Emma said: “It’s like a Catch 22 situation. You can’t get care locally and you can’t get care further afield, and you’re stuck in this situation of getting nothing.”

Due to the lack of local medical services, families across the country have instead turned to online support groups to offer support and advice to people in similar situations.

As Emma explains, this highlights this is “not just happening in the North West, it’s happening all over the UK.”

With a continued lack of local specialists, Emma worries that there will be “a lot of children unable to get a diagnosis [for Tourette’s]".

She added: “If they can’t get diagnosed, they can’t accept themselves and what’s going on with their body.”

Conor McGinn MP

Conor McGinn, Labour MP for St Helens North, said: "It’s shocking that children in St Helens are having to be taken as far as London to receive critical Tourette’s syndrome care, due to lack of provisions locally.”

Mr McGinn – who is also working with Tourette’s Action, the national charity for the condition - raised this issue with government ministers, yet it took six months to receive a reply.

The Department for Health and Social Care state that “funding has been committed to support research into Tourette’s syndrome”,

The statement continues to say that locally commissioned services are “appropriate for the majority of children and young people with Tourette’s syndrome”.

Nevertheless, Mr McGinn explains that the governments own funding for Tourette’s research has “plummeted some 46 per cent this last year alone”.

He added: “Better is deserved by local families like that of my constituent Emma McNally, whose passionate campaigning has rightly drawn a focus on this injustice.

“I hope the Government will heed our calls to think again and reinstate this vital service, and I’ll keep pushing for that at the highest level.”

However, without the required signatures to bring the issue to a national Parliamentary debate, there is concern that nothing will change for struggling families and individuals grappling with Tourette’s.

Emma says this will mean children will continue to “fall through the gaps at school” which may have lifelong consequences affecting their health and mental wellbeing.

If specialised funding and research improves, the hope is that more specialist centres can open across the country so each child can have access to local medical care and services.

Emma said: “[Tourette’s] is a really common condition, it affects 1 in 100 children.

“To have a condition and not be able to have any form of medical care shouldn’t be happening.

“There should be someone in each area that children can access their services to help them.”

To sign the online petition and show your support, click here