Dystonia is a movement disorder affecting 50,000 people in the UK. It commonly presents in a focal area of the body such as cervical dystonia and writer’s cramp, blepharospasm.

Less commonly it affects the whole body and usually presents in childhood – teenage years and follows a more generalised pattern.

Common aetiology: physical / emotional stress which induces a change in activity within the basal ganglia. The physical outcome of this neurophysiological change is muscle spasm, tremor and reduction in coordination / proprioception within the body part affected.

In 2015 we surveyed 2000 ACPIN member regarding their thoughts on effective treatment strategies for people with dystonia. We also wish to establish how many of may be involved in chemodennervation /Botulinum toxin therapy.

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How many people with dystonia have you treated in the previous 12 months?

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There were a number of common interventions / approaches used:

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How did you measure the effectiveness of these interventions?

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All those who completed the questionnaire were invited to join an inaugural meeting sponsored by The British Neurotoxin Network and Dystonia Society on March 11th 2016.

The programme involved key speakers from the movement disorders field.

  • Professor Adrian Williams – Professor of Neurology QEHB
  • Dr Miles Humberstone – Consultant Neurologist – Nottingham
  • Professor Mark Edwards – Professor of Neurology St Georges, London
  • Guy Parker – CEO Dystonia Society
  • Suzi Allen – Review of literature of Cervical Dystonia

Physiotherapeutic Strategies presented by physiotherapists below.

  • Sally Glover
  • Richmond Stace
  • Helen Wilkinson
  • Claire Sanderson

The latter had common themes; using a holistic approach to management including key areas of the body not solely the cervical spine which has previously been thought to be the most effecting Jean Pierre Bleton: Bleton, J. (2010) Physiotherapy of focal dystonia: a physiotherapist’s personal experience. European Journal of Neurology 17(1) 107-112

The outcome of the meeting was to establish:

  1. A working group to create a clinical guideline on physiotherapy in dystonia.
  2. A practical course review teaching key approaches to Botulinum Toxin in dystonia, including Jean-Pierre Bleton.
  3. Encourage more therapists to become involved in Botulinum Toxin Therapy.
  4. Create a website to assist patients and therapists in treatment of dystonia.
  5. Generate a network for communication between therapists interested in dystonia