The TSA has extended the period for the TSC community from across the UK to share their concerns and hopes ahead of the upcoming launch of the UK-wide TSA support line.

The TSC community can share feedback with the TSA through a support line survey, with virtual focus groups and a pilot of the support line to follow prior to the service’s launch.

Click here to take part in the support line survey and make your voice heard

Revised timings for the preparation and launch of the support line are:

  • December 2019: Support line survey open, participants invited to virtual focus groups

  • January 2020: Virtual focus groups to take place
  • January – February 2020: Support line pilot to take place
  • March – April 2020: New support line launched

Why was the period to hear from the community about the upcoming support line extended?

The TSA has heard mixed feedback about the upcoming launch of the support line. Regular users of our previous service feel understandably concerned and saddened about the departure of our regional advisers, whilst also feeling uncertain about how the support line will operate.

Having listened to all feedback, the TSA will now extend the support line pilot period, ensuring that we can listen to and field as many questions, concerns and opinions as possible.

How can I take part in the support line focus groups?

Community members who fill out the survey will be invited to one of a number of virtual focus groups taking place in January 2020 to gather more feedback.

Face-to-face focus groups had been planned originally – however, feedback has highlighted the need for us to be inclusive to all who live with TSC across the UK, particularly those in Scotland, Wales and Northern Ireland, leading us to switch to a virtual setting to gather the opinion of community members regardless of location.

Focus groups get people from a range of different backgrounds and experiences to talk about a single topic, to better understand their opinions and needs

Why are the support line survey and focus groups important?

The survey and virtual focus groups will help to provide a clearer picture of the thoughts and concerns of the TSC community around the support line, adding to the feedback already received. What we learn from the survey and focus groups will be used to inform the pilot of the support line in early 2020, giving the TSA a further opportunity to address any issues following people’s initial experiences of the new service before its launch.

The TSA recognises that the changes taking place to our support services are disruptive to families across the TSC community, with the departure of our regional advisers and their long-term support being felt strongly. However, everyone at the TSA is committed to providing the community with a robust and effective support service for many years to come, with the upcoming support line being a very important part of this.

Click here to take part in the support line survey

The survey should take no longer than 10 minutes to complete. If you would prefer to fill in the survey over the phone or via post, please contact Rachael Wyartt (Head of Support and Information): / 0300 222 5737

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.