Quality statement 3: Suspected dystonia in adults
Dystonia can be caused by an underlying neurological condition or by medication. It can present in a variety of ways and can be misinterpreted, for example as an orthopaedic problem or psychological condition. It should be diagnosed on the basis of clinical features. Neurological assessment is needed to confirm the diagnosis and identify the cause so that the correct treatment and management can be offered.
Evidence of written clinical protocols to ensure that adults presenting with symptoms of dystonia are referred for neurological assessment.
Data source: Local data collection, for example clinical pathways.
Proportion of adults with suspected dystonia who are referred for neurological assessment.
Numerator – The number in the denominator who are referred for neurological assessment.
Denominator – The number of adults with suspected dystonia.
Data source: Local data collection, for example local audit of patient records.
Service providers (such as primary care services, secondary care services and neurology departments) ensure that systems are in place for adults presenting with symptoms that suggest dystonia to be referred for neurological assessment. They ensure that staff are aware of the presentation of dystonia and that it can be misinterpreted, for example as an orthopaedic problem or psychological condition.
Healthcare professionals (such as GPs, specialists and nurses) are aware of local referral pathways for neurological assessment to diagnose suspected dystonia in adults. They are also aware of the presentation of dystonia and that it can be misinterpreted, for example as an orthopaedic problem or psychological condition.
Commissioners (such as clinical commissioning groups and NHS England) ensure that they commission services in which adults presenting with symptoms that suggest dystonia are referred for neurological assessment.
Adults with symptoms of dystonia (such as uncontrolled and sometimes painful muscle movements or spasms) are seen by a specialist. The specialist can confirm whether they have dystonia, and if so, what is causing it and how best to treat it.
Suspected neurological conditions: recognition and referral. NICE guideline NG127 (2019), recommendation 1.9.4
Involuntary muscle contractions possibly resulting in a change in posture or distortion of a limb. It may be task-specific and only become apparent when a specific activity is undertaken, for example writer's cramp. It may be characterised by involuntary contractions of the eyes, tongue, face, neck, trunk, limbs, or larynx, which can be sustained or fluctuating (spasmodic). Other examples include tongue twisting or protrusion and in-turning of the ankle.
Cervical dystonia is the most common type of dystonia and is characterised by a tendency of the neck to twist, flex, extend or be pulled laterally. Head tremor is a common feature of cervical dystonia; however, cervical dystonia can present without tremor. [NICE's full guideline on suspected neurological conditions: recognition and referral]