What our service does
Our aim is to support self-management of a condition deemed ‘incurable’ and inadequately serviced, to give better support and quality of life for a wide group of patients diagnosed with Ehlers-Danlos Type III (Hypermobility type) and possibly some Classic type BUT NOT (at outset) vascular EDS patients or any other type.
As part of this vision we would like to offer ‘Activity’ groups for children aged 5-16years. Physiotherapy, if offered, is time limited and many children are then expected to go on and join main stream sports clubs to continue their activity. Children with this condition often need to increase muscle strength to support lax joints, improve stamina in order to keep up with peers and have balance/co-ordination issues and gross motor skill delay. This means that children often lack confidence and basic skills to be ready for main stream clubs. Our aim is to provide a weekly activity group to provide consistent activity, a supportive environment to develop muscle strength, core strength and basic skills. Each child will be individually assessed and evaluated to track their progress. We also plan to link up with local sports clubs so that when the child feels ready and if they have an interest in a particular sport we plan to offer a handover, educating the club and supporting the child in the transition.
Location of our service
At present our funding covers Bedford Borough, our groups will run at Bedford Academy.
Who our service provides for
We cover age 5-16 years. Due to funding criteria, we can only cover children living in Bedford Borough at the moment. We support children specifically with Hypermobility Syndrome/EDS.
How to start using our service
Contact can be made directly. The places are fully funded but restricted to maximum numbers.
How decisions are made about who can use our service
The program is specifically for children with Hypermobility Syndrome/EDS.
How we communicate with our service users
We are in the process of having leaflets printed. We also use Facebook forums to advertise and ask parents their opinions on their children’s needs.
There will be a thorough monitoring system in place and reviews on the child’s progress will be fed back to the parents/child at the interim assessments, or sooner if necessary.
Accessibility of our service
There is a bus stop outside the school and there is parking available, including disabled spaces.
The studio is on the ground floor with no steps so is fully accessible. There are disables toilets. The parents/carers are to attend the groups with their children. At their initial assessment any adaptations to the program can be made so it’s fully inclusive.
Qualifications and training of our staff
All staff have been trained in safeguarding. The staff attending the group have had experience with children with disabilities.
General Contact Information
Steve Savva – Director and group leader. For information and an informal chat please contact Emily Andrews – Director.