Peer support for members
Our new One to One support enables people affected by dystonia to be linked by phone to volunteers who are well placed to provide informal, positive support.
Administered by Helpline and Support Manager, Angie Brown, the scheme is already showing great promise. “Only yesterday a member called me to say how good it was to speak to someone who had the same type of dystonia as themselves,” said Angie. “The service is ideally suited to the needs of people who have recently been diagnosed and who would like to talk to someone who is a little further along their particular journey with the condition.”
Already 25 members have been matched to other members who have the most appropriate experience to meet their requirements. For instance, it may be a member wants to speak on the phone to someone who has had a particular treatment option, eg. deep brain stimulation or botulinum toxin injections, to discover what is involved before they decide whether or not to go down that route.
The volunteers on the scheme attend a special course to give them the training to provide the best support. To date we have run four training courses, two in London and two in Manchester, and have trained 35 volunteers in providing peer support. “We will be running further training courses in the autumn, including one in Scotland in order to keep up with the demand for matches”, says Angie.
At present we have a real mix of dystonia represented amongst those trained, including cervical, blepharospasm, laryngeal, myoclonus, oromandibular, cranial, dystonia of the back, writer’s cramp and generalised. Types of treatment experienced by the One to One volunteers include deep brain stimulation, botulinum toxin injections and selective denervation.
There is still a need for members with other experiences to come forward and train as volunteers. “We would like to train volunteers with new types of dystonia and treatments such as paroxysmal, dystonia of the foot, hemifacial, axial, more people with writer’s cramp and myoclonus,” said Angie. “We also need more people who have had selective denervation, or have experienced EMG-guided botulinum toxin injections or microvascular decompression”.
“...it’s good to speak to someone in the same position”
The One to One service is not a Helpline service and does not replace the dystonia society’s helpline. Furthermore, it is not a long-term befriending service – the average contact between members and support volunteers is only between 2 – 3 calls. One of the benefits, however, is that it does not matter where people live – you can talk to anyone around the country on this scheme.
Training is held over one day and covers subjects like ‘skills needed to be a supporter’, ‘active listening’, confidentiality, ‘closed’ v ‘open’ questions and self disclosure. “We throw in a little practice at the end”, says Angie, “anyone interested in either becoming a peer supporter or getting some support should contact me on either 0207 793 3657 or by email angie@dystonia.org.uk
