This week Aidy Smith features in the telegraph talking about his battles with Tourette’s Syndrome and he urged people to sign our petition in his Facebook post here: Aidy smith Fighting our corner

We need help to get our numbers up. Please like and share his post to help us get the word out.

We need your help!!

Please take a moment to consider the following: you have a child who is diagnosed with a condition that is causing them pain and distress daily. They get repetitive strain injuries and need weekly sports massages, their throat bleeds due to the viciousness of the noises they make, their toes are constantly bleeding, their hands are cut, they have bruises all over from injury, they have pain every waking hour and yet there is NO medical care provided for them. This is the case right now for children diagnosed with #Tourettes in the North West.

As a parent this is heart breaking, you want to help your child, you would do anything to get help but there is no help!

This needs to change! Please help us with our fight to get a tourettes specialist centre in the north west by signing and sharing our petition http://chng.it/WM2FbVrs

#TogetherWeAreStronger
#TogetherWeCan

• Did you know 1/100 people have Tourette Syndrome? – This is on a par with Autism.

• Did you know that Tourette Syndrome is not just swearing? – Approximately 10% of people with Tourette’s swear (coprolalia).

• Did you know that Tourette Syndrome can be incredibly painful? – Motor tics can result in strained muscles, ripped tendons, even broken bones.

• Did you know that Tourette Syndrome can affect your breathing? – Some motor and vocal tics result in people holding their breath, not being able to take a breath in, gasp for air.

• Did you know that children with Tourettes can be wheelchair bound due to drop tics

• Did you know that Tourette Syndrome isn’t just tics? – For many it is also intrusive thoughts (thought tics), impulsive tics causing very dangerous things, ADHD/ADD, OCD, Anxiety, Dyspraxia, Dysgraphia, RAGE, Sleep Issues etc.

• Did you know that people with Tourette Syndrome have tic attacks? – A tic attack is a combination of motor and/or vocal tics that can last from minutes to hours. They are exhausting, painful, and can look like a seizure. Throughout this experience the individual will be conscious and able to feel the pain caused by the tic attack.

• Did you know there is no cure for Tourette Syndrome? In some case’s tics can be helped with medications but there are no medications specifically for Tourette’s, these medications often come with side effects and are not suited to everyone.

So, if Tourette Syndrome is this common and this complex there must be loads of help for people with Tourette’s, right? – WRONG!

Tourette’s is usually diagnosed by a neurologist. In the UK there are minimal specialist centres for Tourette Syndrome and Tic Disorders. There are specialist centres:
• Sheffield Children’s Hospital (North East)
• Great Ormond Street Hospital (London)
• St. George’s Hospital (London)

And a Tourette Syndrome specialist at Alder Hey Hospital (North West).

Unfortunately, the Tourette Syndrome specialist at Alder Hey Hospital ceased from March 2020; these patients have been discharged from the service. Sheffield Children’s Centre have reached capacity and are no longer taking out of area referrals. This is affecting patients from the North West, Wales, and the North East.

Families are being referred to local services for support; but guess what… across the majority of the UK there are no local services that assist patient’s with Tourette’s. CAMHS in St Helens, for example only deal with mental health issues, CAMHS in North Yorkshire will assess and diagnose ADHD etc. but they do not support the well-being and complexities of Tourette Syndrome specifically, so if a patient does not meet the full criteria for a co-morbid they will be discharged.

This is the Tourette Syndrome void where patients are sent round in circles to end up back at the start or left without ongoing support which is inclusive of the tics, neurological symptoms, co-morbid conditions, or psychological effects.

As a result children suffering daily are left with no care, leading to not only all the issues that come with Tourette’s but also mental health issues as their tourettes is not being supported and managed. It’s appalling and heart breaking that so many families are suffering due to this!

Here is how you can help:

Sign and share this petition asking the CCG to continue to provide specialist support to patients with Tourette Syndrome and Tic Disorders at Alder Hey.

Write to your own MP and CCG to encourage them to support more provisions across the UK for patient’s with Tourette Syndrome and Tic Disorders.