Have your voice heard on how medications should be used to treat childhood dystonia.

Dystonia UK are working in partnership with The British Paediatric Neurological Association (BPNA) to develop guidance for doctors and other health care professionals on how medications should be used to treat childhood dystonia. 

We are looking for a small group of people to be involved with the project as it continues, meeting as a group to hear about what the project is doing and to ensure the end results really do make a difference for children and their families.

What will members of the focus group do?

You will attend meetings run by Dan from the BPNA and Victoria from Dystonia UK. You might be asked to give feedback on our decision making or share your views and experiences of living with dystonia. Dan and Victoria will feedback your views to a Steering Group.

You don’t need to be a professional to join. Our meetings will be welcoming, where everyone is given the chance to have their voice heard.

Who can take part?

• Children with dystonia who are 16 or 17 can either attend with your parent/carer or alone with your parent/carer’s permission
• Young people with dystonia who are 18+ can either attend with your parent/carer or alone.
• Parents and carers are welcome too.

You or your child can have any type of dystonia and live anywhere in the UK.

Where will the meetings be?

We will always meet online so you can join in from the comfort of your own home! We will meet using Zoom. To take part you will need a laptop, smartphone or tablet and a good internet connection.

When will the meetings be and how long will you need to be involved?

We will meet in early approximately 4 times in 2025. We will make sure you are given advance warning for meeting times. Once the group is confirmed we will ask for availability and choose the best time for most of you.