Physiotherapy is an important part of dystonia management, with research demonstrating it can enhance botulinum toxin injection outcomes, helping reduce pain and improving daily functioning. However, in the UK, whilst neurological physiotherapy is recommended in national pathways, patient access remains unclear. Previous research has highlighted challenges in physiotherapy access for dystonia patients, with many only referred if requested and often they must identify suitable therapists themselves.
This disconnect between recommendations and reality prompted me to coordinate a UK-wide survey of patients’ experiences of accessing physiotherapy.
The survey was co-created with multidisciplinary support from clinicians, researchers, and patient advocates from Dystonia UK. It ran from August 2024 to January 2025, promoted by Dystonia Europe and Dystonia UK charities, clinician networks, and on social media. Open to adults over 18 living with dystonia in the UK, the survey attracted 182 participants with an average age of 57 and symptom duration of 19 years. Most respondents were women (73%), with common dystonia types being neck (54%), generalised (23%), and segmental (13%).
Access to physiotherapy revealed significant gaps in care.
60% of respondents had not been offered a referral since diagnosis. Among those not referred, 78% were never offered a referral by their treating clinician and 33% were unaware that physiotherapy may help their symptoms. Notably, those referred to physiotherapy were more likely to be satisfied with their access. When asked about future provision, 78% considered physiotherapy access important, with 59% of those uncertain reporting insufficient information about potential benefits.
These findings reveal significant gaps between recommendations and patient experience. The reasons are likely multifactorial, including limited awareness of physiotherapy benefits, lack of integrated multidisciplinary services, shortage of trained neurological physiotherapists, and brief consultation times limiting discussion.
Treatment experience highlighted the value of specialist care.
Those who had seen a neurological physiotherapist reported greater clinician understanding and more effective treatment. However, only 47% of those who had seen a physiotherapist had accessed a neurological specialist, with barriers including inability to access specialised services.
Non-motor symptoms were prevalent but often unaddressed.
High rates of pain (81%), fatigue (80%), difficulty sleeping (63%), and psychological symptoms (54% anxiety, 52% low mood) were found. Remarkably, 93% reported two or more non-motor symptoms, yet this often didn’t translate into referral to other multidisciplinary team members.
To address this, clinicians are encouraged to routinely and proactively discuss physiotherapy referrals with patients. Through holistic consultation incorporating conversations about non-motor symptoms, patient concerns could be addressed more effectively through referral to other allied health professionals. Additionally, better information resources for those with dystonia would then help improve understanding, so patients could advocate for improved referral practices.
This survey represents an initial step towards improving access to neurophysiotherapy and other allied health professionals, by identifying the need for change in current practice. My future work will build on this by collaborating with patients, clinicians and researchers to improve our understanding and the effectiveness of physiotherapy treatments to enhance outcomes for those with dystonia.
Finally, we are interested in exploring how physiotherapy provision varies across Europe and look forward to working with Dystonia Europe to examine how different healthcare models impact patient outcomes.
Kate Sampson is a research physiotherapist in University College London’s Computational Movement Disorders Lab. She works in Dr Sadnicka’s research group, which uses motor control and computational methods to investigate disease mechanisms and create better treatments for patients. Kate has recently been awarded an NIHR predoctoral fellowship to continue this research.
This research was supported by Dr Sadnicka’s Wellcome Trust Early Career Award.
