My discoveries- Right or Wrong?

So my campaign to raise awareness is moving slowly, but surely. I have been in touch with Tim Howard (Everton FC Goalkeeper) who has Tourettes Syndrome and he is keen to help.

I have also met with my local MP, because while on this journey I discovered like many I am sure, that you have to battle to get the support needed for Tourettes. I am putting this down once again to awareness.

Although my daughter got a diagnosis for Tourettes we were not offered any CAMHS support. I had to ask and this was only because Tourettes Action mentioned it to me. This really surprised me because if I got a diagnosis as an adult for Tourettes I would have a real hard time accepting this. So for a child to get a diagnosis, why wasn’t this support offered?

Now although we are getting this support I still think that the therapist doesn’t fully understand what she is meant to be treating. If my daughter had an eating disorder or had been through a harrowing ordeal they would be better prepared. So once again I feel I have to become ready for a battle.

Another thing I have discovered is that when I am reading about peoples stories, so many of them are saying that they were not diagnosed until their teens or later. Is this because parents aren’t bringing this their symptoms with a doctor, do they even know enough about Tourettes to link the two together?

I know now that Charlie has had Tourettes since she was 3 years of age and she got a diagnosis when she was 8. I didn’t link her symptoms with Tourettes until 2 weeks before the diagnosis. I knew a little bit about the condition but that still didn’t help me make the connection. If there are parents out there like me, would it not be easier to raise awareness in schools than expecting the whole population to be educated in Tourettes. Just like the way ADHD or ADD is flagged up in school, could the teachers not be educated and know what to look out for.

The reason I though of this is because I read an article about a young boy who got diagnosed in his teens, but by that time he was in secondary school and had been identified as ‘naughty’. So he wasn’t seen as a Special Educational Needs (SEN) child, had not been put on a school action plus programme and had not got a Statement. A Statement tells a school all SEN for that child so they are fully aware of the condition; this would prevent a child being labelled as naughty and stop them getting excluded, like this child had.

I have highlighted all these points with my MP and he is working on bringing this to the attention of the Health Minister and the Education Minister. I will keep you posted.

6 Replies

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  • I wasn't diagnosed until I was 19 (although I was told I 'might' have it at 15) but it had nothing to do with my Mum not mentioning it, in fact she was having a constant fight with CAMHS to give me a diagnosis and most importantly some help! I never got any help while I was with CAMHS and I still don't get help from the adult mental heath team because I don't fall neatly under the category of mentally ill, despite the fact that one of my most severe conditions, OCD, is a mental health problem! Asperger syndrome and ADHD also don't fall into their neat little box, but because I have no learning disability (my IQ is average), I can't be seen by the LD team either. There is currently no service whatsoever for people who have either Tourettes, Autism (without LD) or ADHD. It is so wrong :(

  • Yep, the service for adults with TS is very patchy, like LC, I was diagnosed as an adult (29) I have a TS consultant, but many adults with TS don't, it depends if both you and the neurologist that refered you are in the know. (aware of TS consultants) My relationship with my local mental health team (TS consultant only treats tics) has been very up and down, my MP is currently on the case as I should have proper support from cpn. At school I flew under the radar as I was in the top set at school and a good catholic girl that unfortunately had a bad "nervous twitch".

    I have met with Andrew Lansley with regards to the NHS reforms, I have also met with Paul Burstow, Paul Burstow isn't one of those people that you would warm to really, I have met nicer individuals that have been exterminated by the council pest control dept. You can hold a conversation with Mr Lansley, don't expect a conversation with Mr Burstow. Last year the government put forward some proposals for SEN, I may have blogged about them at the time.

  • Hi Stacey

    Great points and some really interesting comments. Over the next few weeks I'm going to send some information on TS, who TA are and how we can try and work together to all CAMHS across the UK (there are about 500 that I have addresses for). Also asking them to fill in a survey to find out what services they provide for young people with TS. Will then compare reponses to what our members say (follow this link to share your experiences: surveymonkey.com/s/CAMHS_Su... ). The overall aim being to provide stronger links between TA and CAMHS as it seems like a lottery as to what type of help you are offered depending on where you go. Hope then to follow up with similar approaches to adult mental helath organisations. Maybe because TS isnt a mental health problem on its own, but as there are quite often other condituions that are classed as mental health problems associated with it, CAMHS sometimes don't know how to offer help? Be interested to hear any thoughts - please let us know and take part in the survey, the more information the better

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