We want to set standards to improve the care children and young people get - and we need your help to make sure we get it right!

Dystonia in children can present with pain, affect normal function, and interfere with participation. Ultimately, we know from listening to you, the huge impact dystonia can have on quality of life for your children. Managing the dystonia can be challenging for clinicians and families alike. While there are several medications to help manage symptoms, at the moment there is no strong evidence base to guide their use. Medication choices are currently guided by expert opinion, which leads to variability in when, and how, different drugs are used, leading to a lot of unknowns for families navigating the management of dystonia

The British Paediatric Neurology Association (BPNA), in partnership with Dystonia UK, is launching a project to develop guidance for doctors and other health care professionals on how medications should be used to treat dystonia. We want to develop “standards” (or rules) on how medications should be used, which everyone can agree on (what we call a “consensus”).

We believe there should be greater clarity about how medications are used in the management of dystonia in childhood. We want to focus on how medicines should be used safely and effectively in different settings, through reaching a consensus on a set of standards for their use. The type of things the standards might include are:

• What information should be provided to families before a medication is started (and how this should be provided).
• Setting goals about the use of medications.
• How to monitor response to treatment and the potential side effects.

We think that in setting these standards, it will help to improve the quality of care for children with dystonia, and help reassure parents, carers and clinicians alike navigating the dystonia journey that management is on the right track.

We are now inviting everyone involved in the care of children with dystonia to contribute to the project. 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.

How to get involved…

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.

Published: 28th February 2024