We need your help to improve the quality of life of children and young people with dystonia.

The British Paediatric Neurology Association (BPNA), in partnership with Dystonia UK, has launched a project to develop guidance for doctors and other health care professionals on how medications should be used to treat dystonia.

Everyone involved in the care of children with dystonia is invited to suggest standards for how medications should be used. We want to hear the views of children, parents and carers, and as many different professional groups as possible to ensure that we reach the best set of standards.

We want to be as broad as possible at this stage of the project – so any and all suggestions are welcomed.

Who can take part?

Anyone who is involved in the care of children with dystonia. You might be a child, young person with the condition, an adult who grew up with dystonia, a parent or carer, related to a child or young person with dystonia, or a professional working with children or young people with dystonia.

How long will it take?

There are some core questions that take around 10 minutes to complete.
There is also a page that allows you to input your suggestions – this will take as little or as long as the ideas you have. We suggest allowing yourself at least 10-20 minutes for this section.

Closing date:

Friday 5th April 2024

You still have a chance to have your say! Closing date extended to mid-April 2024.

You can also read more about the project here.