PARENTS pleading for more support for children with Tourette’s syndrome have received a Government response – but have set their sights on securing a parliamentary debate.

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 12,750 signatures.

Emma’s son, aged 13, has Tourette’s syndrome.

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.

In its response, the Department of Health and Social Care said funding has been committed to support research into Tourette’s syndrome.

“The majority of services for people with Tourette’s syndrome are commissioned locally by clinical commissioning groups, who are best placed to plan the provision of services subject to local prioritisation and funding,” it added.

“Services are commissioned through local community paediatric services or child and adolescent mental health services, with the pathways to one or the other varying across the country.

“These services will be appropriate for the majority of children and young people with Tourette’s syndrome and the teams involved will refer them to multidisciplinary teams including clinical psychologists where necessary to help with the management of their condition.

“The Department of Health and Social Care funds research into conditions through the National Institute for Health Research (NIHR).

“NIHR welcomes funding applications for research into any aspect of human health, including Tourette’s syndrome, although it is not usual practice to ring-fence funds for particular topics or conditions.

“Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

“Since 2018, £2.1 million has been invested into research on Tourette’s syndrome through NIHR’s research programmes. This includes a study on deep brain stimulation in people with Tourette’s syndrome and a digital behavioural intervention for tics in children and adolescents.”

Emma – who is targeting 100,000 signatures for the petition to secure a debate – has responded to the statement.

She says there is very rarely a clinic in any area.

“So basically then the people have got no care at all,” she said.

“It’s basically unless you can get referred to the specialist clinic, then in your area it’s very rare that you’ve got anything, anyone to look after you.

“Usually, you get told ‘we think it’s Tourette’s but there isn’t really anything we can do’, then you just get discharged, or in some areas you don’t even get diagnosed, they just say to you ‘sorry, we don’t really know what to do and we haven’t got a Tourette’s clinic here’, then you just get discharged with no diagnosis or anything.”

Emma also admits she has been surprised by the huge number of people that have signed the petition.

She said: “But I’ve put a huge amount of effort in to try and get the numbers.”

Emma has been nominated for a National Diversity Awards accolade.

For more information visit nationaldiversityawards.co.uk, or to sign the petition visit petition.parliament.uk/petitions/575370.