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Tale from a TA Support Group Co-Ordinator

Posted Wed 1st Dec 2021 at 14:09
by Catherine Mosey

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Read all about our fabulous West Midlands support group leader, Catherine.

Hi, I should introduce myself, I’m Catherine, and I run the West Midlands Tourettes Action Support Group.

I have Tourette Syndrome myself and struggled throughout my teens in the late 80’s without a diagnosis or knowing why I ticced. Anyhow, fast forward to the present day and I’m busy attending to group stuff which involves answering emails, calling venues to book meetings (which has always been part of this role) but recently as more and more people can’t access treatment, my role has become more about campaigning, or that could just be me?

I could just sit and watch to see what happens, but I just couldn’t do that when so many parents tell me that they can’t get treatment for their child, or they’ve got into debt to pay for treatment.

It’s a sad state of affairs.

Only this morning, a friend tagged me in a post in a Facebook group which consisted of a letter from RISE (formally CAMHS) stating that they cannot treat their child and that they should look at the Tourettes Action website. Luckily my friend found this post and brought it to my attention.

Rewind to a few weeks ago when I found myself in the local council chambers for a meeting regarding the painfully long waiting times for autism spectrum disorder assessments which can be up to 4 years locally.

Think about that. That’s half a lifetime to many of the youngsters who attend the Little Pegs meeting. Little Pegs has been a lifeline to many parents of ASD children in the area. I like to think of them as our sister group - run by a great bunch of women who I’m proud to say are my friends. Some of the children who attend their meetings have a tic disorder or TS and some of the children who attend the meetings I organise have ASD, we sometimes meet in the same building.

Anyway, there I was with my friends in the council meeting, (I’m the odd one out as my child is feline and obviously has different health needs). I had read through the report from the previous meeting and there was no mention about the lack of treatment available in the county, so time for me to get to the bottom of this! We took our turns; we had 3 minutes each to put across our stories - in my case, my experience of being a group co-ordinator and meeting so many parents that haven’t been able to get treatment, also the experience of growing up without treatment and how detrimental that could be to the child’s future chances of reaching their potential.

In addition to the councillors, there were also managers from CAMHS. I knew one of our councillors would be supportive, he’s the Green councillor for a local ward, both he and his wife signed and shared Emma McNally’s petition which sadly didn’t get the 100,000 signatures needed to trigger a debate in the House of Commons, but it did gather a healthy 70,000 signatures and support from a number of celebrities on social media.

He was horrified by the lack of treatment available for TS, and we all agreed that RISE need more clinical staff members to get though the backlog of ASD assessments and treat TS. I was shocked that they couldn’t supply the figures that were asked of them, the most pertinent being “How many clinical staff members are there?” They wiggled and squirmed and answered with waffle. “Can you tell me how many boots there are on the ground?” One of the guys from RISE said that they were working towards being able to offer Habit Reversal Treatments for Tourette syndrome.

I swapped contact details with him as he wasn’t aware there was a support group in the town despite me getting an award a couple of years ago. He wasn’t aware of the research papers that have been written about HRT so I suggested he start with my own consultant in Birmingham whose research has been prolific. This isn’t a good start for someone trying to design a treatment pathway for Tourette syndrome……incidentally, I still haven’t heard from this guy……maybe I should email him with some suggested reading?

Prior to writing this, I left a voicemail for our MP, he’s the Tory Whip, not someone I have any faith in for any major positive changes, unless I can turn it into a nice photo opportunity for him and let him take the credit.

Anyhow, bye for now, I will keep you posted on any progress or any other happenings in the area.


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