The Rehabilitation Centre for Neuromuscular Diseases is a hospital with no beds. Interdisciplinary teams from the Center works in local environments, most often in users home but at times also at their places of work, at school or in local hospitals.
The staff is formed by: physicians, nurses, psysiotherapists, occupational therapists, social workers, a psychologist and an educational psychologist. They work as consultants in interdisciplinary teams with contact to the disabled person and to local teams.
The work is always carried out in co-operation with users, and a continuous interdisciplinary course is always in focus. This requires planning and collaboration about the future.
In practice, the expert team from the Rehabilitation Centre for Neuromuscular Diseases makes an objective assessment of a users psysical, emotional and social situation. Some of the methods are:
- Home visits and interdisciplinary meeting with local professionals, e.g. general practitioner, psysiotherapist, occupational therapist, social worker, school teacher, personal helpers, representatives from a hospital team.
The focus is on the total life-situation of the user, and rehabilitation is described as a continuous process where provision of support is agreed on and remains in force until the next meeting when adjustments are made. - Report is worked out by the consultants in collaboration with the user and the professionals present, and fields of responsibility are distributed, leaving no doubt as to who is responsible for what. In agreement with the user, all the persons involved receive copies of the report.
- Follow-up meeting is decided. Subsequent home visits and interdisciplinary meeting are held as required, not always for all participants, only those relevant. Each time a report pinpointing tasks of responsibility is prepared and distributed to all the persons involved.
- Hospitalmeeting to make sure the user receives relevant treatment and to follow up on local care.
- Family courses for users, relatives and professionals are held. The aim of each course is for professionals to communicate pertinent information to the disabled person and his relatives. And to provide the participants with the opportunity of being together and sharing experiences with the other families with the same disease/handicap.
- Education of professionals in subjects conserning neuromuscular diseases.
The Rehabilitation Centre for Neuromuscular Diseases is funded by a state grant to regions. The Centre receives an annual amount of money, subject to adjustments within maximum and minimum limits from each region.
Patients are referred by the general practitioners or from paediatric or neurologic wards as soon as they have been diagnosed.
Research and Development Centre
The Research and Development Centre was established in 1985 and is a part of The Rehabilitation Centre for Neuromuscular Diseases, which although closely associated with Muskelsvindfonden is a selfgoverning institution. The centre shares both premises and facilities with Muskelsvindfonden.
Aims
The primary aim of the Research and Development Centre is to enable The Rehabilitation Centre for Neuromuscular Diseases to offer its users, namely those children and adults who have one of the neuromuscular diseases, the most informed treatment and counselling service provided to the highest quality standard. The Research and Development Centre therefore has four objectives:
- to gather and collate research findings
- to disseminate information
- to act as a catalyst of pertinent research
- to undertake clinical research projects
Tasks and functions
The tasks of the Research and Development Centre include:
- undertaking projects aimed at improving the living conditions of people with neuromuscular diseases.
- acting as a resource centre the findings of basic research in neuromuscular diseases, conducted in centres throughout the world, are screened and the results made available to both users and professionals, thus creating an awareness of progress.
- collecting and collating the latest information on neuromuscular diseases available, nationally and internationally, and passing it on to professionals through newsletter, handbooks and articles in professional journals, and to the users through articles in Muskelsvindfondens own magazine and information pamphlets.
- initiating and conducting clinical research projects to increase understanding of the manament of neuromuscular diseases.
- encouraging social and health care institutions to conduct and collaborate on research projects. These efforts have led to the establishment of two Respiratory Centres and two Orthopaedic Centres of people with neuromuscular diseases ind Denmark. The Centres are located at the University Hospitals of Aarhus and Copenhagen.
- arranging seminars and conferences at an international level in order to establish research networks and to disseminate information on the most recent methods of treatment and encouraging discussion at a highly professional level monitoring and maintaining the quality standard of the methods of treatment currently used, while at the same time ensuring that all users of The Rehabilitation Centre for Neuromuscular Diseases are provided with treatment which reflects the latest research and knowledge available.
Methods
Projects are developed, supervised and managed by the Research and Development Centre. Each project is carried out by an external project team by consultants of The Rehabilitation Centre for Neuromuscular Diseases, usually in close cooperation and collaboration with the social welfare services, hospitals, institutions of higher education and with the users of The Rehabilitation Centre for Neuromuscular Diseases as active participants. The research and development strategy is planned and executed so that each project builds on the findings of previous studies, using interdependence to maximum effect. FundingThe basic costs of the Research and Development Centre are covered by The Rehabilitation Centre for Neuromuscular Diseases budget, whereas each project must be self-financing. The latter is usually obtained from independent sources or grantees. ProjectsThe early project undertaken by the Research and Development Centre focused on describing the natural course of the diseases and developing methods of measurement to quantitate this and the manifestation of the secondary effects of disease progression. In subsequent projects the emphasis has been on the evaluation and further development of methods of treatment and on measurement of outcome. Other projects have focused on the understanding of factors which affect the quality of life of people with neuromuscular diseases.
Completed projects include:
- standardisation of the measurement of neurogenic scoliosis
- development of a disability scale to classify the deterioration of physical function
- prediction of the approaching need for mechanical ventilation
- housing adaption
- learning difficulties in boys with Duchennes muscular dystrophy
- a survey of the living conditions of people using domiciliary mechanical ventilation
At present we systematically work towards improvements within the following areas:
- respiration
- the dynamic sitting position and seating (the ability to sit independently and to move in the sitting position)
- the ability to use the hands for eating, writing etc.
- the ability to stand and walk in the presence of profound muscle weakness
- physiotherapeutic methods to prevent secondary contractures
- diagnostic criteria
- methods of measurement to ensure properly timed management of the secondary, and often disabling effects of a progresive disease, such as muscular dystrophy
- the living conditions of people with Myastenia Gravis
- vocational opportunities for people with neuromuscular diseases
In recent years the Research and Development Centre has established and coordinated research in physiotherapy in cooperation with Norway, Sweden and Finland. We expect that such efforts in collaboration will be developed within other areas of research.
