Tourette’s syndrome

Currently there is no pathway to diagnosis and no on going support for Tourettes patients in the North West of England. Children are left with NO care and no where to turn.

A neurologist at Alder Hey hospital was the only neurologist in this part of the country dealing with Tourette’s and he left in March 2020, so the children are without care.

Medical professionals are admitting that their is a “gap” in the services provided but this doesn’t help the children suffering on a daily basis!

This is not an isolated case that is affecting me, hundreds of families all over the north west have been affected, people in Liverpool, Sefton, St Helens, Halton, Warrington, Wigan, Manchester, Greater Manchester, North Wales, the list goes on.

Prior to March 2020 most children in the area who had Tourettes were seen and managed by Doctor Curran at Alder Hey. When he left the hospital in March Alder Hey did a mass discharged of patients and advised that children be treated in the community by either CAMHS or community paeds. In essence this sounds great but unfortunately neither of these services treat tourettes as part of their remit, so this left children with no care at all locally. Some families tried to get care further afield, some were refused due to now an even higher demand on the service and some are still waiting to hear. While some just tried to plod along and cope as best they could.

In August 2020 I created a change org petition to try and improve things here in the North West and get a tourettes specialist centre locally. I was contacted by hundreds of families from all over the U.K who were in a similar position, either with very minimal care in their area or no care at all. Lots of families looking for a diagnosis and being passed round from service to service and no one to help.

In December the petition reached 10,000 signatures (it now stands at over 11k) and we 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!!

So not to be beaten I then created a petition on the governments platform, it went live on the 16th February and has almost 7000 signatures in less than a month. 

We are trying to urge anyone to sign the petition to help not only local children but children all over the U.K. https://petition.parliament.uk/petitions/575370  we are parents fighting not only for our own child but all the other children our there!

Tourettes 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, the continual movements cause extreme pain but this doesn’t stop the tics, they continue throughout the pain, making it worse and worse. They can be dangerous, often putting the child at harm. They can be extremely embarrassing for the child, 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. Imagine being a child and coping with all this and yet having no one medically to help! The figures reveal that Tourettes 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!

There are also no NICE guidelines for Tourette’s meaning that lots of professionals are not sure how to address or treat.

Wondered if you can share the petition across your social media and help us get more funding for Tourette’s which would ultimately mean better care.

Thank you