NEAS backing mum’s campaign for Tourette’s children

A COUNTY Durham mum has been praised by an MP and charity leaders for her “inspirational” campaign to highlight a “postcode lottery of care” for children with Tourette syndrome.

Louise Hodkinson, of Crook, is fighting for changes in NHS awareness and support after her “stressful and deeply frustrating” experience in trying to get help for her nine-year-old daughter, Freya.

Although Freya has finally been diagnosed with the neurological condition after an exhausting and distressing process, a postcode lottery means there is no NHS therapy available for under-12s in the North East.

Now, as part of her campaign to raise awareness and funds for the Tourettes Action charity, Louise is in training to run a marathon from Gateshead to Crook on April 26.

“I’d love it if I could bring about changes in the NHS, so that Tourette’s is taken more seriously – I’d really feel I’d achieved something,” said Louise, who works in children’s and young people’s services at Durham County Council.

“The fundamental problem is that there’s not enough awareness among GPs – we had to see three before we were taken seriously.

Louise has been supported by Bishop Auckland MP Sam Rushworth, who said: “Louise’s campaign highlights how important it is that children experiencing tics and Tourette syndrome are properly understood and supported at an early age. For too many families, accessing the right diagnosis and care remains a real challenge.

“I met Louise at one of my constituency surgeries and what stands out most is her determination to turn her family’s experience into something positive for others.”

The MP’s support has included liaising with the Integrated Care Board to help establish a focus group and share e-learning materials with health professionals.

As a result, Freya has been made a case study to present to senior NHS managers to illustrate the need for greater understanding and support.

“It has been a privilege to support Louise and I am proud that my team could assist as she continues to raise awareness and push for better support, including access to tic therapy for children,” added Mr Rushworth.

Louise has also described the support she has received from the Tourettes Action charity as “wonderful”.

CEO Emma McNally said: “At present, there is no nationally specified NHS pathway for assessment, diagnosis or treatment, and no full NICE clinical guidelines for Tourette syndrome. As a charity, we see daily the enormous strain this places on families, many of whom describe us as a lifeline.

“There are effective treatments for Tourette syndrome but too few people can access them.”

John Phillipson, Chief Executive of the North East Autism Society, which supports some individuals with Tourette’s, also backed Louise’s campaign.

“Louise is a shining example of someone who has battled hard for her own child but also wants to have a wider impact so that other families don’t go through such a traumatic process.”