Emma McNally’s Campaign for More Research into Tourette’s Syndrome

My son was 9 when we he was diagnosed with Tourette’s Syndrome. We had a neurologist who understood the condition, we were doing ok and if we weren’t, then we knew that we only had to pick up the phone and he would help us. Looking back, I really didn’t appreciate how extremely lucky we were.

Fast forward two and a half years to April 2020, we received a letter discharging us as the neurologist was no longer at the hospital. My initial thoughts were that this must be some kind of mistake. But this is exactly what happened – not just to my son but to many others all over the North West.

This left children with no pathway to diagnosis and no ongoing support for Tourette’s. Children were left with no care and nowhere to turn.

The hospital advised that children be treated in the community by either CAMHS or community paeds. In essence, this sounded great – but unfortunately neither of these services had the expertise to diagnose or manage Tourette’s, so this left children with no local care.

Some families tried to get care further afield, at one of the few Tourette’s specialist centres. Some were refused due to now an even higher demand on the service and some are still waiting to hear back. Others just tried to plod along and cope as best they could.

In August 2020, I tried to change things locally, but didn’t achieve very much apart from being told there was a gap in the medical provisions provided for Tourette’s. I then created a change org petition to try and improve things here in the North West and get a Tourette’s specialist centre locally. This led to hundreds of families from all over the U.K who were in a similar position contacting me. They either had very minimal care in their area or no care at all. Lots of families were looking for a diagnosis and being passed round from service to service and no one to help. It became clear that the lack of services for Tourette’s was a UK-wide issue.

In December 2020, the petition reached 10,000 signatures and I had hoped that this would be a sign of change. However, I was informed in January that the government can ignore petitions if they are not created on their official platform. I had worked tirelessly to get these signatures and to hear this was nothing short of devastating. I felt like so many families who had hope that the petition would change things had now been let down.

Not to be beaten and bring back hope for those families, I created a petition on the government’s platform, but this time I created the petition to help everyone throughout the UK with Tourette’s, as it had become apparent that it wasn’t just North West families that were struggling, it was affecting families all over the UK.

We are trying to urge anyone to sign the petition to help children all over the U.K. get the medical care they deserve and need https://petition.parliament.uk/petitions/575370

Tourette’s is a very misunderstood condition, the general public think it is a few sounds and movements and “what’s the big deal?”, but it is so much more. It can be extremely painful for the individual as the continual movements cause extreme pain and exhaustion. They can be dangerous, often putting the individual at harm. They can be extremely embarrassing, causing them to suffer with social exclusion and anxiety. They interfere with every day things that others take for granted such as sleeping, writing, showering, walking, school work, eating etc. Imagine being a child and coping with all this and yet having no one medically to help.

The figures reveal that Tourette’s affects 1 in 100 children, I believe this figure to be much higher as lots of children are going undiagnosed or miss diagnosed.  If the medical care doesn’t improve, this means that 1 in 100 children are being failed by the NHS. Leaving a child undiagnosed and with no medical help at a pivotal point in their life can have lifelong issues, which could all be alleviated if the right medical care was in place from the start.

There are also no NICE guidelines for Tourette’s, meaning that lots of professionals are not sure how to address or treat, this is one of the main reasons why the care received differs so dramatically all over the country.

I’m hoping that if we continue to fight by raising awareness, signing the petition and writing to our MPs, we can hopefully improve things for children with Tourette’s. There are a handful of Tourette’s specialist centres throughout the UK that are doing an amazing job but they are bursting at the seams with referrals and lots are now refusing out of area referrals. We need these throughout the UK.

Please sign the petition and help us get these specialist centres. This may not affect your child or a child you know, but one day it might, we can’t do this alone, we need your help .. #TogetherWeAreStronger

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