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!

Currently in the North West there is no ongoing medical support for children with Tourettes and also no pathway to diagnosis. Families are going round in never ending circles of referrals to be told that no one can help them, wasting both NHS time and money. Whilst all this is going on, there is a child at the centre of it all that is struggling.

Myself along with lots of other people are fighting to try to change this. We want a Tourettes Specialist Centre in the North West to help all the children who currently have Tourette’s and all the children yet to be diagnosed. The following petition has been created, so please if you don’t do anything else, please sign and share the petition to help mine and many other families http://chng.it/WM2FbVrs 

To try to promote the petition and also spread awareness of the very misunderstood condition myself and many others are #RunningForTourettes #CyclingForTourettes or #WalkingForTourettes between now and the end of October. Why not join us https://www.strava.com/clubs/RunningForTourettes 

#runningfortourettes #togetherwecan #togetherwearestronger #tourettesawareness #tourettes #parentsfightingforchange 

When my son was diagnosed with Tourette's Syndrome it was a really difficult battle for him and us as a family. We had no idea really what was involved with Tourettes, how it affected people on a day to day basis. Like others, when we heard the word Tourette’s we automatically thought of swearing straight away. We had laughed at the thought of it in the past but the reality is that it isn’t to be laughed at, it causes so much pain and distress to the person suffering. We were one of the lucky ones though, we had a neurologist to diagnose us and also offer us medical care. Since this neurologist is no longer around, there is now no care available and families are left to just plod along and struggle.

So what is Tourette's Syndrome?

Tourettes Syndrome is a neurological condition that causes repetitive, involuntary movements and vocalisations called tics. Tics can change all the time, so we don’t know where we are from one minute to the next. The condition causes repetitive strain injuries through doing the same movement over and over again, normal day to day activities such as writing, reading, showering, eating, getting dressed and even walking become a struggle as the tics interfere with them. For a child to be fine one day and then have this thrown at you, it can be really hard to adapt to.

• 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!

Why are we trying to raise money?

As there is no medical care available all we have left for us is support from local tourettes groups and the tourettes action charity. These groups are a massive support to not only my family but also hundreds of others, providing advice and help whenever needed.

Please help by donating anything you are able to. Every penny counts! If everyone who reads this donates just £1, it would make a huge difference.

As there is currently no way of getting a diagnosis, these groups and the charity are families only way of getting help, there are a life line to them, providing endless support, speaking with schools on their behalf, providing training to schools and support for everyone involved.

Here is how you can help:

Please donate anything you can, no matter now small, even just £1 makes a huge difference! 

Sign and share this petition http://chng.it/WM2FbVrs asking the CCG to continue to provide specialist support to patients with Tourette Syndrome and Tic Disorders at Alder Hey.

Run, cycle or walk for tourettes and use our hashtags to spread awareness.

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.

And last but not least I hope that by reading this you have learnt something and then maybe next time you see someone moving in a certain way or making funny noises you won’t stare or laugh at them.