80 Support Groups and counting…. a positive lock-down legacy

Posted Mon 17th Aug 2020 at 11:15
by Emma Myers

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Laughter, tears and new-found friendships 

Incredibly, since the country went into lockdown on 23 March 2020, our Support Services Manger Emma Myers (right), has facilitated over 80 online support groups!

With the arrival of Covid-19, the number of live chats, emails and calls to the TA Helpdesk from concerned members of the TS community increased, with many reporting raised levels of anxiety, more tics and a lack of support services, all in addition to home-schooling, the concept of furlough and isolation worries.

With the cancellation of all physical groups, Emma identified a serious need for alternative support options and the TA Online Support groups were born.

We spoke to Emma about her support group journey over the past 5 months.

How many people have attended a group since lockdown?
Emma: approximately 263

How have the groups evolved?
Emma: We started with just one group – an evening zoom chat for parents of children with TS.
Since then we have had; weekly online parent support group; weekly adult support groups; weekly group for adults; diaphragmatic breathing sessions; teenager time to talk; dad/male-role model groups; parents of under 10 year olds; parents of people with coprolalia; bake-alongs and many guest speakers.

What has been your highlight?
Emma: Seeing friendships develop between those attending the groups. Communication hasn’t stopped at the meetings! Various WhatsApp, Instagram and Facebook groups have been set up meaning that support and friendships have continued to grow.

What has been the hardest moment?
Emma: Not being able to reach out and give a hug to those that are struggling.

Have you learned anything new about TS?
Emma: Masses! Various coping strategies; how amazingly resilient our TS kids are; how incredibly hard it is to get diagnosis/follow up care; how wonderfully creative our TS community are and how supportive each and every one is.

What has been the longest group?
Emma: Probably the Thursday coffee morning – quite possibly because there is lots of chatting going on!!

Do you think the groups will continue now we are coming out of lockdown?
Emma: Without doubt, although they will now go to once a month.

What would you say to someone who is thinking about attending an online support group?
Emma: Our groups are very relaxed. There is no expectation that you have either your microphone or video on, you can come along and just listen and type your question/concern if you prefer.

Our groups are wonderfully supportive and inclusive. The only thing that we won’t discuss is medication. Nothing else is off limits.

Is there aything else you'd like to add?
It has been a complete honour being part of these groups.

I have laughed and cried in equal measures. I have met the most amazing people. I have baked cakes, played games, made new friends, been educated about kahoot, and been amazed at how adults/parents/children cope on a daily basis.

To find out more about our support groups, please click here

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