Recognising the challenges in managing episodes of severe dystonia, the British Paediatric Neurology Association (BPNA) has developed documents called “Dystonia Action Plans” – and they would like to encourage you to discuss with your child’s health care professionals whether a plan would be helpful for them. Dystonia Action Plans provide a template which is completed by the doctor responsible for managing a child’s dystonia, working together with their parents and carers.

The plans provide details of:

• What medications your child is already taking
• What to do if their dystonia worsens and medications need to be increased
• What to do if they aren’t able eat or drink or take medications for a period of time

Dystonia Action Plans also provide a prompt to health care professionals for what they should look out for that might be triggering worsening dystonia, so they do not just concentrate on dampening down the dystonia.

If you would like to discuss these action plans with your child’s health care professionals you can download them here:

• BPNA Guidance on the use of the template Personal Dystonia Action Plan (2022)
• BPNA Dystonia Action Plan Template
• Example BPNA Dystonia Action Plan

The BPNA is always keen to hear how these plans can be improved, along with your thoughts on whether they are helpful for you and your child. If you do have any feedback – please contact [email protected].