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The People Behind the Support

Posted Mon 17th Dec 2018 at 12:17


Meet our super-star 'Volunteer of the Month', Lucy Toghill. Lucy answers a few questions about her experience as a valued volunteer for Tourettes Action.

Name: Lucy Toghill
Connection to TS: Son with TS

1. What inspired you to start volunteering for Tourettes Action?

I have a son that was diagnosed with Tourette Syndrome when he was 7. We were at a loss as to where to go for advice and support until we came across Tourettes Action. They were a pillar of strength for us and we couldn’t have managed without their support! 6 years on and we are managing well. About 4 years ago I decided to give something back and join their volunteer team to see if we could be of some support to other families that are struggling like we were.


2. How long have you been a TA volunteer?

I have been a volunteer for about 4 years now.


3. What volunteering roles do you currently have?

I first started off by being a befriender which is a great role. Then I set up a support group in my local area of Sussex. My most recent role is now as a School Awareness Trainer and I also sit as a lay member on the Scientific Advisory Board.


4. Tell us a bit more about your roles:

The befriender role is great. It's so important that like minded people can chat together and having been through the same experience as someone else is invaluable to making this role successful. I would have loved a befriender to talk to when my son was first diagnosed so I know how important this contact is. Being able to give someone advice on the things you have been through and just to offer a listening, empathetic ear is wonderful.

I was so pleased to set up the ‘Tourettes Sussex’ support group in my local area. I knew there were families out there like ours who needed support and before too long we had a great group of people. I felt it was important that families could meet other families going through similar issues and make connections and friends. It was lovely seeing the children go off and play together knowing that no one was going to judge them for their differences and they could just be friends like other children. Realising that in fact they are ‘normal’ and that there were other children out there locally who are experiencing the same difficulties as them. It was so important for the parents too to be able to go out in a group of people and not having anyone judge your parenting style. Everyone understood each other.

Then, just last year I went on the school training programme and this is the role I most love. As a mum of a child with Tourettes and a teacher, this gave me the backgrounding, experience and confidence I needed to be able to go into schools fully equipped and offer them the support and advice they needed to get the best out of a child in their school with Tourettes. With a bit of guidance and tourettes awareness, schools are able to cope much better in helping the children with tourettes in their care have full access to the curriculum and reach their full potential. Being able to meet the teachers and support staff who may not know what strategies to best use with our children is invaluable. This is a role that is massively growing and I have now started taking other volunteers with me to train them to join the team.

Next year I am going to be helping TA train some more people interested in this role so we can reach more schools.

My most recent roll has been as a lay member on the Tourettes Acton Scientific Advisory Board. This involves being part of a committee of other volunteers and health professionals and meeting in London a few times a year to discuss new research proposals and have an input into which ones are viable and novel for Tourettes action to spend their funds on.


5. What is the best thing about volunteering for TA?

Knowing that you have made a difference to someone else’s life and being able to give something back to Tourettes Action.

6. What advice would you give to someone who is considering volunteering?

Don’t hesitate to take part. You will find it so rewarding and get such a buzz from knowing you are part of such an important team that is making the difference to real people lives.


7. Anything else you’d like to add?

Tourettes Action are such a caring and supportive charity to be part of and they are very grateful for any help you are able to give.

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