The Dystonia Society responds to a BBC Scotland report into the ‘postcode lottery’ for Deep Brain Stimulation (DBS) treatment in Scotland.

Last Chance - London to Brighton Cycle

Register by the last Friday in August to take part in this exciting fundraising challenge. The event is a 54 mile cycle starting in London and finishing on the Brighton seafront.

We are delighted to welcome Guy Parckar as our new Chief Executive. Guy joins us from Leonard Cheshire Disability where he headed up the charity's policy and campaigning work.

The National Audit Office (NAO), which is an organisation set up to scrutinise public spending, has published a ‘progress review’ into ‘Services for people with a neurological condition’.

More information about the report, which was published on the 10th of July, can be found here:

The report checks on progress made since an inquiry by the Public Accounts Committee in the House of Commons in 2012, and found ‘mixed’ progress had been made in terms of implementing the Committee’s earlier recommendations around improving services.

The three recommendations against which the NAO judged progress to be poor were:
• “using the clinical commissioning group outcomes indicators set, joint strategic needs assessments and health and wellbeing boards to ensure that all people with neurological conditions have appropriate access to services
• “mandating joint health and social care commissioning of neurological services
• “ensuring that everyone with a long-term neurological condition is offered a personal care plan, covering both health and social care”

The Neurological Alliance, of which the Dystonia Society is a member, is planning to follow-up on the report and urge the Public Accounts Committee to run a new inquiry into the provision of services for people with neurological conditions. Read the response from the Neurological Alliance here...

We need your help. Please tell us how you manage your dystonia. 

  • In what ways does dystonia affect your daily living?
  • How is your communication with medical professionals?
  • Do you have tips for others about coping?