Children with Tourettes in the North West have NO medical care - this needs to change!

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There is NO pathway to diagnosis and NO care or support for children in the North West with Tourettes Syndrome. This means that:

  1. Children who are diagnosed with Tourettes have no on going medical support
  2. Children looking for a diagnosis have no where to turn

Things you might not know about Tourettes:

  • 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 but cannot stop.
  • 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.
  • Did you know Tourettes can cause throats to bleeds due to the viciousness of the noises 
  • Tourettes can cause pain every waking hour

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

Yet there is NO medical care provided for these children!

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!

Tourette’s is usually diagnosed by a neurologist. In the UK there are minimal specialist centres for Tourette Syndrome and Tic Disorders.

There are currently only 3 Specialist Tourettes Centres in the U.K. - 2 in London and 1 in Sheffield.

Alder Hey in Liverpool previously provided support for hundreds of children with Tourette’s Syndrome, unfortunately, the Tourette Syndrome specialist at Alder Hey Hospital ceased from March 2020; these patients have now been discharged from the service. Leaving them with no medical care.

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.

At this point families will then ask to be referred to one of the specialist centres in either Sheffield or London.

Sheffield 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. So this leaves the 2 centres in London, which have HUGE waiting lists.

Travelling to London would require 2 days out of school, the cost of travel and accommodation and also a lot of stress and anxiety for a child who is already struggling daily.  This could all be helped by having a service closer to home.

Lots of families have been refused referral to the specialist centres in London, meaning they have no care locally and also cannot get treatment further afield, leaving them with NO medical help what so ever!

All these referrals and appointments waste the families time and the time and money of the NHS. If we just had a Tourettes centre in the North West, all of this could be helped.

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!

If all North West CCGs were to pull together and invest money we could get a specialist multi disciplinary Tourettes centre in the North West, meaning that families would not have to travel miles to get the care for their children and also meaning that the NHS would in the end save money, as endless unnecessary referrals to services that cannot help, would stop. 

These children that are struggling daily, are being let down by the NHS and need your help to change this!  Not getting a diagnosis and not getting care and support for this condition at such an important age in their life can lead to life long behavioural and mental health problems, which can be alleviated by having medical care and support! Please help us by signing the petition.