Psychiatric Expertise for a Multidisciplinary Huntington's Disease Clinic

In 2005, in response to the development by a private health care provider of a nursing home for patients with Huntington's disease, members of the United Kingdom's National Health Service (NHS) set up a multidisciplinary Huntington's disease clinic. The nursing home was initially set up without consultation with local psychiatric services. Psychiatric presentations by the nursing home residents were leading to some urgent referrals to secondary care and to unilateral discharge from the nursing home. These persons were then admitted to the local psychiatric unit pending placement in a further specialized unit.

Discussions took place concerning the unmet psychiatric needs of the nursing home residents—for example, the lack of implementation of aftercare for patients who had previously been detained (a legal requirement), the absence of an agreed-upon protocol for transferring patients from other services, and the resulting noncompliance with mental health policies. In addition, the relative lack of planning to manage escalations of problematic behavior and the occurrence of potentially destabilizing traumatic and antitherapeutic hospital admissions exemplified the need for such a clinic. These discussions led to a proposal for a community-based clinic, which specified goals, budget, use of resources, and other practical implications for the preexisting local services. Presentations were made to the Social Care Inspectorate by the local psychiatric services on these issues. Several changes were implemented by the private health care provider, including the provision of nursing staff trained in mental health, care assistants, and life-skills coordinators within the nursing home.

A multidisciplinary clinic was also established in response to these difficulties. The clinic was anticipated to affect care in several areas, including admissions to the hospital, appropriate use of health care resources, and management of the progressive deterioration that occurs among patients with Huntington's. The clinic is held on a quarterly basis and comprises a general practitioner, psychiatrist, neurologist, and a regional care advisor (a specialist nurse) from the Huntington's Disease Association, as well as managers and nursing staff from the private nursing home. The progress and management of patients are discussed at the meetings, and detailed quarterly management plans are created. Important components of management include ongoing assessment of the patient's physical and mental health, use of multiple medications, and attempts to balance effective control of movement disorders and psychiatric illnesses for which some of the medications may overlap. Comprehensive summaries of the patients' histories, prepared with psychiatric and general practitioner notes as well as patient interviews, provide supportive documentation to the clinic.

The Huntington's clinic yielded several positive benefits. Local health care resources are used more appropriately and effectively than before, for example. Acute psychiatric disturbances are managed proactively, and hospitalization is rarely required. This has benefited patients who are unable to communicate effectively and who show problematic behaviors in the context of complex concurrent medical pathology. In addition, nursing home staff meet weekly to compile a progress report about the patients, which is faxed to the psychiatric team. The senior psychiatrist advises watchful waiting or a change in treatment. In emergency situations, the psychiatrist arranges prompt domiciliary visits to assess the situation further. This has proved effective in preempting clinical problems. The implementation of the clinic has seen a reduction of admissions, from six admissions of 13 residents from February 2003 to June 2005 to two admissions of 13 residents from June 2005 to October 2007. We believe that the formation of a clinic involving the partnership between a private health care provider and an NHS service has reduced the number of admissions of both nursing home residents and individuals with Huntington's disease living independently. Since the formation of the clinic, patients have not been unilaterally discharged from the nursing home, and all transfers to other units have been by mutual agreement of all relevant professionals involved.

The formation of the Huntington's disease clinic offers a model for other services that need to respond to acute changes in local service needs. The clinic also provides an invaluable training experience. We are looking to expand the clinic by inviting other professionals, including speech and language therapists, dieticians, and physiotherapists. We have collaborated with another Huntington's disease service provider to exchange ideas to further develop the service. The involvement of family members may be particularly useful for patients with diminished capacity. Finally, this model of managing patients who have complex health care needs in a nursing home rather than an inpatient unit can be generalized to other services.