‘It’s great Tourette’s is being discussed but we need more support’ says Manchester mum

The founder of a Manchester support group for people with Tourette’s syndrome has hailed a debate on the often-maligned condition in parliament as “massive” but warned more needs to be done.

MPs discussed funding and support for children with the neurological condition in the House of Commons this week.

Tracy, who put together the Manchester Tourette’s Support Group as her son George suffers from it, said it was a huge step forward to get such high-profile visibility for the condition.

However, she warned that a lot more still needs to be done to support people with the condition and their families and the discussion in parliament only covered some people’s experiences of Tourette’s.

What did Tracy say about the debate taking place in parliament?

Tracy said it was an extremely positive development to have Tourette’s talked about in the House of Commons in the debate which was instigated by St Helens North MP Conor McGinn.

She said: “The majority of people I have spoken to are just glad it’s out there and awareness is being spread.

“The fact Tourette’s is being spoken about in parliament is massive for us.

“It is good that someone is speaking up for us.

“However, there is massively more that still needs to be done and it’s probably going to take a long time and not happen as quickly as we would like.”

What are the issues that still need addressing with Tourette’s?

Tracy said that while discussion of funding for diagnosis of children with Tourette’s is welcome that is not how everybody who has the condition gets it.

She also said more research into Tourette’s needs to be done as some of it is now a decade or more old and her anecdotal experience of running the support group has led her to suspect conclusions on how common it is are underestimates.

She spoke about the lack of support and the gaps in provision across the health services that people with Tourette’s often fall through.

She said: “This all came from a petition about diagnosing children with Tourette’s but there are a lot of people with adult-onset Tourette’s. We’ve got people in our support group who got sudden-onset Tourette’s in their 20s, 30s and 40s, and they need looking after as well.

“The problem is that no two people with Tourette’s are the same. I’m still learning about it after all these years.

“Unless you’re taking medication the doctors tend to discharge you because there’s nothing else they can do.

“You are referred to mental health services but while they can help with some of the co-conditions of it like obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD) they don’t really understand because it’s a neurological condition, not a mental health one.

“We need more up-to-date research, that is massively important. Research says about one in 100 schoolchildren have Tourette’s and I just feel that must be wrong by the number of people coming through the door of the support group.”

Tracy’s Manchester support group now has almost 800 members on Facebook and continues to meet monthly.

She said: “We’ve got new faces coming through the door every time. Kids are meeting other kids and adults are meeting other adults who have gone through the same experience.

“I didn’t think when I started out nearly five years ago that it would be so big.”

What have national Tourette’s organisations said about the debate in parliament?

The petition for more funding and support for Tourette’s was started by St Helens mum Emma McNally, who has just been appointed CEO of Tourettes Action.

She said that while discussion in the Commons focused mainly on children she was working to improve access to help for everyone with Tourette’s regardless of their age.

She said: “I was delighted that my MP, Conor McGinn secured a debate in Parliament focusing on Tourette’s syndrome and how the lack of services is impacting people up and down the country but particularly in the North West.

“Whilst his debate focused mostly on the problems children are facing with accessing care, I also want to add that this problem is affecting both children, young people and adults with Tourette’s.

“The services for all are shocking and improvements need to be made across the board.

“Two of the three specialised regional centres are no longer accepting out-of-area referrals, which further impacts families who can’t access care locally as it is now more difficult to access care further afield.

“Gillian Keegan also mentioned in her response: ‘The majority of services are commissioned by clinical commissioning groups’. This, however, does not happen in many areas of the country, families being told that Tourette’s is not part of their remit and they are not commissioned to provide a service.

“I am hoping that this is just the start of things, the ideal situation would be for the government to increase funding and resources into the study and treatment of Tourette’s, as well as ensuring that there are NICE clinical guidelines to follow and a local specialist for every area in the UK, meaning that everyone can access care regardless of their postcode.”