We are delighted to announce a new optimal clinical care pathway for adults with movement disorders, including those living with dystonia, has now been published.

The pathway sets out what good treatment, care and support look like. This includes treatment and support for those experiencing the first symptoms of a neurological condition like dystonia, right through to those who have lived with such conditions for a long time. As well as dystonia, the movement disorders pathway encompasses a wide range of different disorders such as Parkinson’s disease, atypical parkinsonian disorders such as multiple system atrophy or progressive supranuclear palsy, Huntington’s disease, ataxia and Tourette’s syndrome.

We have long known that current care for people with dystonia is often fragmented and may only address some of the symptoms. The pathway emphasises the fundamental importance of people with movement disorders receiving a timely, correct and well-explained diagnosis, something we know is common for dystonia patients to lack. We were keen during our involvement in the project to emphasise the importance of a multi-disciplinary approach for dystonia patients. That is to say that the inclusion of physiotherapy, occupational therapy, psychological therapies and other services are all important in the symptom management of dystonia. The quality of on-going symptom management and specialist multi-disciplinary care will depend on sufficient staffing and access to multi-disciplinary teams with expertise in movement disorders to ensure that movement disorder patients can maintain their independence for as long as possible and have the best possible quality of life. For people living with neurodegenerative movement disorder conditions that are progressive, the pathway helps demonstrate that they will have changing needs.

Our hope is that the development of the pathway will help address these issues and support the improvement of services. The pathway should help enable commissioning of quality services, locally and nationally helping to meet the needs of the local population and deliver efficiency savings across the system which we believe will have a positive impact on the dystonia community.

Dystonia UK has been contributing to the development of the pathway alongside consultant neurologists, with support from allied health professionals, other patient groups and people affected by neurological conditions as it was formed. The development of the optimal clinical pathway has been overseen by NNAG and led by the Association of British Neurologists (ABN) movement disorder advisory group. We would like to take the opportunity to thank NNAG and the ABN movement disorder advisory group for their lead in this work.

What next?

The movement disorders pathway is part of a suite of optimal neuroscience clinical pathways that have been developed by the neurological community, with the support of NHS England and the National Neurosciences Advisory Group (NNAG). Looking forward, Dystonia UK will continue its involvement in this work and will be working in partnership to help develop a number of cross-cutting theme pathways that impact the dystonia community. These are:

  • Mental health
  • Neurogenetics
  • Rehabilitation
  • Transition from children's to adult services

Published: 2nd February 2023