Tourette’s campaigner turn attention to Wales after Westminster disappointment
A campaigner for better specialist care for people with Tourette’s has turned her attention to ensuring better provision in Wales after a petition to Westminster signed by 70,000 fell short of the threshold needed to be debated.
Helen Reeves’ petition to the Senedd has now crossed 1,000 signatures and campaigners hope it will be debated in the Welsh Parliament if they can reach 10,000 supporters.
The Pembrokeshire mother, whose 13-year-old daughter needs to use a wheelchair because of Tourette’s, said that sufferers in Wales were having to go private and travel as far as London for treatment.
“The UK petition reached just over 70k signatures. They needed 100k. For the Welsh petition we needed 50 signatures to get it looked at by the petitions committee, and we need 10k signatures to have a debate in the Senedd,” she told Nation.Cymru.
“Health is devolved in Wales so anything that came from the UK Tourette’s petition wouldn’t have changed anything for the people in Wales.
“Currently in Wales we have no specialist support for children with Tourette’s syndrome and only one for adults. There is no pathway for Tourette’s syndrome in Wales and this needs to change.
“People often can’t get a diagnosis or even be seen in the first place, and those who do get a diagnosis are often discharged the same day with no ongoing medical care and support.
“Previously people had to travel to London, but now hospitals such as Great Ormond Street are only accepting referrals from their own area where they had previously accepted referrals outside of their area.”
Tourette Syndrome is a neurological disorder and affects the nervous system, often causing ‘tics’ – repetitive movements or sounds.
The petition notes that one in 100 children in Wales will be affected by Tourette’s but that the only specialist in Wales doesn’t treat children.
“Not getting medical care and support can lead to long-term mental health problems,” the petition says. “People with Tourette’s can have difficulties with anxiety, sleep, rage and social isolation.
“We need a proper, clear, clinical pathway and access to specialist provision and medical care for people with Tourette’s syndrome in Wales.”
The petition can be signed here.