The Tourettes Awareness Challenge

I’ve written before about the strength and power of Tourettes Mums – well, four mothers from the North East are taking it to the next level. In the next ten days they’ll be travelling across the country visiting every city in England to raise awareness of Tourettes. This extraordinary campaign kicks off today. A few days ago Jac Campbell, one of the four women taking part, took some time away from preparing to tell me about their plans and what was motivating them.

Here’s my interview with Jac (JC):

TH: To start off can you tell us a little bit about yourself and your link to Tourettes Syndrome?

JC: My main link with Tourettes is through our son Robert who’s now eighteen and was diagnosed with Tourettes aged eleven. He has ‘Tourettes Plus’, in fact we often say he has ‘Tourettes Plus, Plus’, because he has a range of labels which are part of Robert – who he is. He had very severe tics when he first was diagnosed but gradually over the years they’ve got a lot better. We needed help in order to be able to support Rob at home because it was a shock to the system. We contacted Tourettes Action and they were really, really helpful – it was Claire on the helpline and she was fantastic, so that’s how the link began.

One of the things Robert felt straightaway was that he was very, very different and that there was nobody like him. He’d never met anyone like himself before and so we went to one of the conferences as soon as possible and he really enjoyed it and made contacts with other people. It helped him realise he wasn’t alone. We got more and more involved. I’m not someone who likes to just sit in meetings – I like to do things and to do things that I feel make a bit of a difference. So I helped set up the North East support group because there wasn’t anything up here at all.

It’s grown from there. We started to get more and more confident as we learned more about Tourettes and realised that we can basically do anything we want. We put all sorts of activities on for kids like fencing or abseiling, things that people might think that kids with Tourettes can’t do. Earlier this year we put on the Festival and now we’re doing the Tour.

TH: Tell us about what you’re up to, what are you undertaking?

JC: The idea was Donna Emmerson’s: to visit every city in England to raise awareness of Tourettes. We worked the idea through and realised it was doable and that the timing was right for us all, so we decided to go for it.

TH: Tell us about the team.

JC: We’re four mums (or ‘mams’ as they say up here). Donna’s 30, Liz is 40, I’m 50 and Eileen’s 60 and between us we’ve got six children and grandchildren with Tourettes.

We’ve known each other for a few years through the support group and we’ve shared experiences and ideas and have got to know each other’s children really well. We’ve all found the thing that everyone finds with Tourettes, that the problems are the lack of support locally, lack of awareness, and lack of understanding. And even though we know it’s not as uncommon as people think, whenever we’ve had contact with Services they always say ‘Well we’ve never come across anyone with Tourettes.” This made us realise there’s a job to do here, an opportunity to do some awareness-raising.

TH: Tell us the Route and how it’s going to work.

JC: There are 52 cities in England (actually I mis-counted – there are 51 so we’re counting Newcastle twice as we’re starting and ending there). So we’re starting off in Newcastle on Monday 30th September and the Lord Mayor of Newcastle is setting us off. From there we’re going down the east side of England as far as London and then out to Kent and down the South Coast to Truro and then back up through the West Midlands and to Lancashire, West Yorkshire and to Carlisle and then back to Newcastle. We’re doing the whole thing in just over ten days.

TH: What are you doing in each city, and what can they expect?

JC: We’re spending a maximum of half an hour in each city. It’s a really tight schedule. We’re calling it The Tourettes Awareness Challenge because it’s really challenging in terms of logistics.

At each city we’re being welcomed by the mayor or other civic representatives. That’s important to us because it acknowledges Tourettes and the need to provide support. By taking the info pack we’re giving them, they’re accepting that they need to know more about Tourettes and that they have a duty to share that information within their authority. We haven’t had any rejections – all the local authorities have been up for it so far.

Because there isn’t anybody in the vehicle with us who has Tourettes we’re trying to make sure that people with Tourettes from every city are included when we actually get there. We’re hoping that lots of the support groups from each area will come and join us. What we hope is that even though we’ll be getting back in the car and zooming off we’ll be leaving the officials with people from the support groups and it means they can raise any issues or particular things relevant to their local area.

It’s all coming together very fast and at the last minute. We’ve asked the representatives from each city to meet us somewhere iconic within their city so that afterwards there’ll be a whole series of photos of people with Tourettes in every city in England.

TH: What’s your biggest hope in terms of what the tour will achieve? The three goals are:
• For every city in England to acknowledge that there are people with Tourettes in their city who will require support, and that they need to be prepared and trained for that.
• To raise public awareness in every city in England. By requesting meetings with Lord Mayors and generating media attention we hope it’ll appear in every local newspaper.
• We wanted to make sure that we included people with Tourettes across England.
TH: Tell us about the pack, what are you leaving with each city?

JC: We’re leaving a Tourettes Action general leaflet about Tourettes. We’ve had some other leaflets printed that give a bit more detailed information. We’ll be leaving a copy of the Touretteshero Frequently Asked Questions and also a tailored briefing for local authorities that covers the services they provide – housing, social services, education, arts and culture.

TH: This challenge is being led by Tourettes Mums – what do you think are the qualities you need to be a strong Tourettes mum?

JC: I’m not sure I’m the right person to ask. If I’m being honest I think the most difficult thing is acceptance. You want so much to help your child and you see your child struggling, suffering in all sorts of ways and being excluded. Sometimes this is pretty direct and sometimes it’s indirect. Initially I wanted to find a cure and then I wanted to sort everything out for my child, but ultimately you’ve got to support your child to manage things themselves and give them the confidence and self-esteem to do so.

The campaign is more than just mums fighting for their own kids. I think when you get involved in a community and you see how complex Tourettes is, it’s like nailing jelly to the ceiling – you think you’ve got a handle on it and then things change. It’s not just the tics that change – it’s also which of the comorbidities happens to be a problem at any particular phase of life. Accepting that that’s the way it is has been important to me.

TH: What are you most looking forward to?

JC: We’re looking forward to seeing everyone in every city and to catching up with friends along the way. The range of venues is fantastic and it’ll be great fun going from place to place, meeting people who are keen to see us and learn more about Tourettes.

TH: Jac, thank you and good luck.

To support the Challenge and find out how to get involved check out the Facebook page. You can follow the progress of the challenge on their daily blog. There will be regular updates via Twitter, follow @goldylookfleece for the latest news. The Challenge is being funded by donations – if you’d like to contribute, visit Just Giving here.

Thanks to Jac for taking time to talk to us. Good luck to her, Lizzie, Donna and Eileen, and congratulations for undertaking such an impressive campaign.

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