We are incredibly pleased, that following our involvement dystonia was specifically recognised in a recently published Quality Standard from NICE.

NICE (National Institute for Health and Care Excellence) has published its 'Suspected neurological conditions: recognition and referral' Quality Standard, a set of statements describing what high quality care looks like. These statements cover areas where there is variation in practice. They also address where outcomes for people using services or the public might be different in different areas.

This Standard is intended to support more effective and timely diagnosis of people with possible neurological conditions and contains six areas for specific improvement and information about how these may be measured.

We are incredibly pleased, that following our involvement and particularly that of our former chair, Joanna Atkin, dystonia was specifically recognised in these statements, especially concerning the frequently mentioned misdiagnosis of dystonia as either a musculoskeletal or a psychological condition. This increases the awareness of dystonia, especially in primary care, as well as providing vital evidence that services are improving.

The dystonia statements reads: Adults with suspected dystonia are referred for neurological assessment (Statement 3).

NICE recommends this Standard be monitored through local evidence collection to ensure that the physical and psychological needs and preferences of adult suspected neuro patients are assessed, addressed, and regularly reviewed, including patient surveys.

We would especially like to take the opportunity to thank Joanna for her involvement in this work. You can read more about how Joanna got involved and her experiences of working with NICE in our Dystonia Matters magazine (Issue 103).

Published: 8th January 2021.