A bursar's reflection on the presentation at PMG Conference 2022 by Claire Higgins, Physiotherapist at Greenwich Children’s Integrated Therapies Service

I was keen to write about this presentation because, over my years of clinical practice, I have become lax when recognising a specific type of increased tone, and often mistake dystonia for spasticity. This has therefore impacted on the accuracy of my wheelchair seating prescriptions and service users' comfort.

The talk by Claire Higgins (pictured) followed on from the presentation by Marchant Barron and his mother, Dr Susan Pringle, in which Marchant explained his life’s struggles with dystonia, and how he has had devices developed to enable him to stand and walk. With Marchant’s talk fresh in mind, Claire was able to relay to the audience the need for a person’s dystonic movements to be understood when prescribing positioning plans. Until this session at PMG conference, I never truly understood the limitations which dystonia can put on a person’s lifestyle, caused by the continuous involuntary movements.

Claire defined dystonia, describing a dystonic movement as "an abnormal, patterned, uncontrolled and unintentional movement." She then  explained the difference between dystonia and spasticity, stating as follows: 

“Spasticity – you can feel it; Dystonia – you can see it”.

Following this she described in depth how fixing a service user’s joint or posture may increase dystonic movements.

However there are many other non-postural causes, such as:

• Constipation
• Reflux
• Fatigue and/or tiredness
• Emotion
• Communication
• Joint fixation through orthotics

Claire highlighted the importance of using a multi-disciplinary team (MDT) approach when identifying what could be causing changes in a person’s dystonic movements, and when creating a care plan to help manage the movements.

She encourages therapists not to fix a person’s posture in wheelchair seating, as this can make movement intensity and frequency worse. She also emphasises that a service user’s posture in seating can be interchangeable, caused by their dystonic movements; therefore multiple assessments and postures should be explored at differently timed appointments.

Claire urged wheelchair services to be creative, and to trial different postures which can be altered, or allow for movement. She further encouraged the use of some dynamic components, especially if moulded or contoured seating is being issued; this would allow the user to have dystonic patterns of movement, while maintaining them in a supportive seated position.

Claire ended her presentation recommending the setting up of specialist dystonic pathways, where all relevant professions of the MDT are automatically included during a service user’s involvement with wheelchair services. This would encourage a range of causes for an increase or change in a service user’s dystonic movements to be investigated and addressed appropriately.

With Marchant’s presentation fresh in mind during Claire's talk, I was reminded that while, as a therapist, I am assessing for and prescribing equipment, the service user who will be using the wheelchair has social goals as well as a postural need.

In my future clinics I will:

• identify a service user’s specific cause of increased tone
• ask more detailed questions, such as what could be a trigger to increasing a person’s dystonic movements frequency and/or severity
• be more proactive, and consult other professionals for their input during postural assessments and equipment prescriptions
• trial multiple prescriptions where appropriate, and be more open to having failed prescriptions
• be more open to prescribing dynamic components

In conclusion, it was useful to refresh my memory on the difference between spasticity and dystonia, and this refreshed knowledge will influence my assessments, and the postural support I prescribe, in future. It was also good to be reminded of the importance of MDT input, because dystonic movements can be impacted and managed by other healthcare professions, especially when the trigger is not wheelchair related.

Photograph courtesy of Clinton Davin