Summary
We hosted a Family Camp at Fordel Firs in Dunfermiline for people who have Tourette's and their families, many of whom had never met anyone else with Tourette's and many who were extremely isolated.This camp helped to bring families together for support and to meet others in similar circumstances, sharing tips, strategies and personal experience in a safe space. It helped to reduce isolation, build connections, give carers a well earned break and increase confidence in many of the participants.
What Family Camp did
We have been lucky enough to have received funding from Better Breaks to facilitate this camp for our members for a few years now. We open the applications up to our members across the whole of Scotland, however we look particularly at those members who are more isolated or who have more challenges accessing appropriate supports and we do our best to make this experience accessible to them.
The Scout Camp at Fordel Firs is a wonderful venue with understanding instructors and we managed to secure both buildings and had some families who visited daily allowing us to more than double our numbers on previous years. We did a combination of instructor-led and self-led activities with a range of difficulties designed to push participants out of their comfort zones and boost confidence and team working skills.
Our camp provides workshops to help carers take time for self care and build their support network as well as having fun. We saw young people who were shy and wrapped around their carers leg, build confidence, feel safe and make friends within even the first few hours. They found their tribe and were able to leave their carers and participate more independently, it's a magical thing to witness.
What Tourette Scotland has learned
We have learned the importance of ensuring we have up to date figures, ensuring we apply for the right amount of funding. Targeting the right families helps us to ensure that those most in need have access to our services. Quite often the newest members are the ones most in need as they come to us in crisis. We always have new members along at camp and some people who have been previously been volunteer helpers.
We are considering other venues across Scotland to ensure our camp is accessible to as many people as possible. We consider the Scout services to be a great partner service and are planning training sessions for their seasonal workers to help ensure they continue to be knowledgeable and understanding about Tourette's and other neurodiversity's.
We are adept at dealing with the unexpected as Tourette's is often extremely unpredictable. This helps us massively when planning and ensuring we stay as flexible as possible. We love being involved with Better Breaks and appreciate the hard and meaningful work the fund supports. We feel that the Short Breaks Team understand the needs of our members and are a great funder for us. Many other funders have extremely overcomplicated application processes which means that for us, more time is spent trying to navigate forms and red tape and less time is spent supporting those we volunteer to help.
How Tourette Scotland has benefitted from the funding
This grant helped us to help more families, strengthen our reputation and increase our reach around Scotland. As a result of this we are securing new premises for local groups and able to support even more people.
Project Outcomes
Outcome
We will have helped create lasting friendships and continuing peer support and the young people will show an interest on joining again or will encourage other young people to attend.
Results
Our feedback about the connections made through the camp was great. We have witnessed in our local groups both in-person and online, the friendships and connections which have been formed and the extra support that this has created.
Case study
Claire and her family had been struggling with geographical and emotional isolation after her son John developed severe vocal tics. He was bullied at school and began school refusing and the family all found it too stressful to even go to the shops together. This family had never met anyone else with Tourette's. We managed to encourage them to come along to the camp even though they were extremely nervous and needed support with transportation. They quickly bonded with another family who a few years ago were in a similar situation. The young people had lots in common and got on well. They encouraged each other through activities and and the parents/carers spoke for hours about experiences and strategies. These families are now considering a holiday away together.
Outcome
Carers sharing how freeing the weekend away was.
Results
The feedback we received was very positive and we will use the comments to improve future camps and encourage new members to come along.
Case study
We have several families who help at our local and online groups who regularly talk about the difference the camp made to them by giving them breathing space and a way to relax knowing they were in a safe space/understood.
Outcome
Positive feedback about the difference the weekend made, carers growing in confidence and being able to pass on their knowledge and suggestions to others.
Results
Some participants from previous camps are now volunteering to help families through facilitating groups.
Case study
Susan joined as a member around 4 years ago and was completely at breaking point, overwhelmed by her son's complex needs and completely at a loss how to support him. After outreach calls, personal profiles and of course a place at camp for her family, the difference was unbelievable. She now feels supported and empowered and she helps to support others via a local group, and online group and she has also joined the committee to give her time and expertise to help others.
Outcome
Less isolation, less families in crisis, positive feedback about the weekend and it’s lasting effects.
Results
Fabulous overall feedback and lots of people asking if we can do it again. We have even had people ask if we can do more than once in the year. The families we have spoken to have all reported feeling better supported, less isolated within their communities and more able to support their family members or themselves as they have developed skills with the help of the camp.
Case study
We are often contacted by members in absolute crisis when they have been let down by other services or don't know what else to do. George and his family were one of them, the mental health of George and his partner was a serious concern. They had been refused from CAMHS, left with only a vague diagnosis, unsupported at school and now school refusing and at a loss for what to do. After some time of building trust and support through outreach and school meetings we managed to get them along to camp. This was a very emotional experience and it had it's challenges but they benefited so much from the lived experience of others and in finding their tribe, it gave them a starting point in feeling accepted and understood and trusting in their own abilities. They now feel more confident in pushing for access to care and advocating for themselves.