Good Practice Guide


Tertiary-based neurology teams

These are teams who work in specialist centres, often based in teaching hospitals. These centres offer diagnosis, treatment and monitoring of most types of dystonia. For dystonia, the team has one or more neurologists specialising in movement disorders, usually supported by a multi-disciplinary team including dystonia nurses.

There are also 17 neurosurgical centres in the UK, of which 8 are designated centres offering Deep Brain Stimulation in both adults and children with dystonia. There is currently only one centre offering Selective Peripheral Denervation for cervical dystonia.

The role of a dystonia nurse

Dystonia nurses are general nurses who have a detailed knowledge and understanding of dystonia and its management.  They provide vital continuity of care as they often see the same patient at each visit and their clinic slots are frequently longer than those of a neurologist. Whitaker et al (2001) states that nurse practitioners provide a more flexible, much appreciated, safe and cost-effective service for this client group.  Wider use of outreach nurse practitioners should therefore be encouraged.

Some dystonia nurses are trained to give botulinum toxin injections either in the clinic or as an outreach service. Through continuity, they can learn the specifics of each patient’s treatment, including how best to site the injections for maximal effect with lowest dose. Dystonia nurses are sometimes also able to adjust the dose of botulinum toxin within agreed parameters, if necessary seeking advice from the consultant through agreed protocols (Whitaker et al (2001)). Other dystonia nurses provide support to the consultant in the clinic. They can offer patients counselling and advice either before or after treatment, particularly for those who are newly diagnosed or are experiencing side effects from treatments, or when there is an exacerbation of symptoms.

In centres where DBS (Deep Brain Stimulation) is carried out, patients may be seen by specialist DBS nurses who provide advice, liaise with neurosurgical staff and sometimes make adjustments to the settings of the implanted neuro-stimulator with guidance from the neurologist.The specialist nurse is also very important in managing an Intrathecal Baclofen (ITB) service in children with secondary dystonias not suitable for DBS.

Outreach/home visit models

Patients living a significant distance from their treatment centre can experience pain and posture problems during the journey to receive treatment. Outreach services can address this through providing services closer to or in people’s homes. They benefit patients as it means only the specialist clinician has to travel a significant distance.

Outreach services for dystonia are usually provided by a specialist nurse or sometimes a neurologist. They are based in local community hospitals and health centres, and occasionally services are delivered in the patients’ own homes. Referral to these services is usually by one of the neurologists at the main treatment centre who do the initial assessment and treatment and then refer for treatment locally.

Local services can also often offer more time for advice and support. In addition, they provide continuity of care as usually the same clinician treats the patient each time. Over time, this enables the clinician to adjust the specifics of their treatment to the patient’s needs, including how best to site the injections for maximal effect with lowest dose.

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Last reviewed October 2011

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