The Dystonia Society

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Dystonia Advocacy Service

Have you been unfairly refused benefits, such as the DLA?

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 over the past two years our Helpline team (0845 458 6322) have been receiving more and more calls from people who are struggling to access the support they need.

As a result we have set up a new Dystonia Advocacy Service to run alongside the Helpline. The new 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, will be running the service two days each week, empowering 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 leat 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 Descrimination 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.

 

This work comes about as the result of a 6 month pilot Advocacy Project and thanks to funding from Charitable Trusts and Foundations, including the Sylvia Adams Charitable Trust.

If you need the support of the Advocacy Service please contact the Helpline on 0845 899 1040 or 020 7793 3657

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