Neurological conditions
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Tourette’s syndrome

emmamcnallyemmamcnally Member Posts: 4 Listener
edited March 12 in Neurological conditions
Please help us change things for people with Tourette’s by signing the petition https://petition.parliament.uk/petitions/575370

this post gives a bit more info

https://www.facebook.com/1187681671/posts/10224717261857414/?d=n

Replies

  • emmamcnallyemmamcnally Member Posts: 4 Listener
    More info 

    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
  • Cher_ScopeCher_Scope Posts: 3,990

    Scope community team

    edited March 12
    Hi @emmamcnally

    Thanks for sharing this with us and well done on amassing a huge 7.5k signatures in this petition.  It sounds like there's a real gap in service provision for people with Tourette's that needs scrutinising/intervention and I wish you well as you proceed with taking this further.  Please keep us updated :) 

    Just to add, I've moved this into our Invisible Impairments category to allow it greater visibility with people who might have Tourettes or their loved ones.
    Online Community Co-ordinator

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  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    This has always been a problem as drs don't know what to do and people don't understand  I looked after a lady with tourettes  she was lovely 

    There was very little help or understanding of her condition when I first met her she said if I say duck it means you need to move she understood her own condition and would tell people the warning signs some she couldn't but she started an online group to try and help people 

    It seems to be alot more common in children than it used to be  but I think sometimes it can also be mis diagnosed  hope that something can be done to make things better x
  • emmamcnallyemmamcnally Member Posts: 4 Listener
    Thank you 💚
  • mikehughescqmikehughescq Member Posts: 6,575 Disability Gamechanger
    Interesting. In what sense is Tourette’s an invisible impairment?
  • emmamcnallyemmamcnally Member Posts: 4 Listener
    @mikehughescq I am not quite sure if was added here by @Cher_Scope
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    @Cher_Scope tourettes isn't an invisible  impairment 
  • Cher_ScopeCher_Scope Posts: 3,990

    Scope community team

    Apologies all, I'm clearly not with it today! I will move to a more appropriate category.  
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
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