Communicating with healthcare professionals

It is vital to establish a good dialogue with the healthcare professionals responsible for your care. Together you should agree the right approach to treating dystonia and agree and document a care plan. This should be reviewed regularly and revised if necessary. 

Dystonia treatments provide significant relief for the vast majority. However, a minority of patients report receiving limited relief. This can be a distressing experience. There are a number of steps that can be taken if this happens. It is important to have an open discussion with the person responsible for your care – it can also be a good idea to call the Dystonia Society Helpline to discuss. 

If you are not happy with the treatment you are receiving:

  • It is often worth discussing this with the Dystonia Society Helpline
  • It is always important to have an open discussion with the medical professional responsible for your care and agree changes
  • If after discussion with your current healthcare professional things don’t seem to be improving, you can request your GP to be referred for a second opinion (they don’t have to agree but usually do)
  • If you feel you’ve got stuck, you can talk to the Dystonia Society advocacy service

Managing pain

Some people with dystonia report experiencing pain while others report none. Pain is most commonly experienced by those with neck dystonia and/or generalised dystonia although some people with other types also report experiencing pain. Steps can be taken to help manage pain. To read more about managing pain click here.

Other helpful support

In addition to core treatment, other support can include a speech and language therapist if your speech is affected and an occupational therapist who can help you make adaptations to your approach to everyday life and make it easier to cope.

Sources of information

It is important to understand what dystonia is and what treatment options are available.


The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.

The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.