Have you been unfairly refused benefits, such as PIP or ESA?

Has your employer refused to adapt for your condition?

Have you been refused the specialist treatments that you need?

Sadly, these situations are becoming more and more common and our Helpline team (020 7793 3650) have been receiving more and more calls from people who are struggling to access the support they need.

As a result we run a Dystonia Advocacy Service alongside the Helpline. The Advocacy Service aims to stand up for people living with dystonia and act on behalf of those individuals who are struggling to access the support they need.

Angie Brown, the Helpline Manager, heads up the service which empowers individuals to get the support they are entited to by:

  • Providing information about dystonia and evidence of need for benefits tribunals when individuals have been turned down for benefits. In order to ensure that we can provide support in time for your tribunal, please give us at least 3 weeks before the tribunal to prepare the letter. If you get less notice, you can still get in touch and we'll do our best but we can't guarantee to provide the information.
  • Contacting employers who are unfairly refusing to make adaptations, to explain that dystonia is a disability and to remind them of their duty to make reasonable adaptations under the Disability Discrimination Act.
  • Contacting treatment centres when individuals (or a group of individuals) are having difficulties in accessing treatments - e.g. delayed botulinum toxin injections.
  • Working with PCTs / Strategic Health Authorities / Clinical Commissioning Groups when treatments are being reviewed to ensure they recognise the impact of dystonia and the importance of offering treatments such as DBS and botulinum toxin injections.
  • Unfortunately, we are unable to get involved in any legal proceedings.

If you need the support of the Advocacy Service please contact us on 020 7793 3657 or email [email protected] 

The Dystonia Society operates a confidentiality policy to ensure the information provided to us will be used solely for the purpose for which it is given and be kept confidential within the organisation. However, the Society may disclose information to the appropriate authorities without permission where it has a reasonable belief that there is concern that the health and safety or welfare of an individual is at risk.