Need for Person-centered Systems: some disabilities require life-long rehabilitation on-demand!
By the Norwegian Rheumatism Association
To rehabilitate = to bring something that's "damaged" back to its former level of quality and function. That is also the basic idea dealing with people in need of rehabilitation. But sometimes this definition needs a little adjustment.
Rheumatoid arthritis and other kinds of rheumatic diseases are for the most part chronic and life long. The variations in intensity of the disease and the pain, functional level and need of health care are grave between the different diagnoses. It also varies from person to person, and it can individually fluctuate from day to day, month to month and year to year. Because of this pattern, we need to design support systems which can follow and respond to the person, throughout the lifespan.
People who have been subjected to accidents, injuries or acute illness may go through a rehabilitation program. Hopefully they will be brought back to their former level of function or at least as close as possible. Then everything is fine and case closed. This is very seldom the situation for people with rheumatism.
The general picture is that they are gradually getting worse over time. They get to a point where special measures must be taken and intensive treatments must be activated in order to get back on their feet. Through rehabilitation, one can usually not expect full recovery, but some improvement, which will last for a short or longer period of time. Good or better periods will alternate with bad and worse periods, like in a circle, repeating itself over and over.
Constant need of health care
A lot of people with arthritis and other rheumatic diseases will be in a more or less constant need of different kinds of official health care - medical treatments, rehabilitation or prevention activities.
In many situations it can be hard to differentiate and distinguish borderlines between actions defined as medical treatment, rehabilitation and prevention. Physiotherapy and exercise activities can in different situations, or even simultaneously, be defined under more than one category.
Rehabilitation for people with rheumatism can include:
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physiotherapy
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exercise activities (in water and on land, indoor and outdoor)
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electro therapy
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heat pads, warm baths and so forth
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finding the right help remedies to compensate for lost or reduced mobility or to prevent further damage to the joints
An important part can also be to help the person find alternative ways of conducting certain movements, doing certain things, going about their daily activities and finding the right balance between activity and rest.
The variations in the intensity of the disease will demand frequent adjustments to the persons activity level, the adequate medical treatments, the need of physiotherapy and the quantity and combination of medical, therapeutic and practical support.
They might also need regular or occasional stays at rehabilitation institutions. It is important that such stays are being followed up closely by adequate additional rehabilitating measures or preventive activities.
Goals for rehabilitation
Many people with rheumatoid arthritis who are working, full or part time jobs, fall out from time to time because the disease is taking a turn for the worse. Then they are in need of intensive and at times extensive medical and rehabilitating measures in order to get back on their feet.
Sometimes returning to work on the original terms are out of the question. They may have to adjust their work tasks, get sufficient help or remedies, reduce working hours or even find a new job with a whole other concept of tasks and pressures. Flexibility in the work situation can be of great importance for people with rheumatic diseases. Adequate adjustments may enable the person to go back to work or to limit the likelihood of frequent periods on sick leave.
A work relationship can be both long and stable, but still with the regular or occasional interruptions of hospital admissions or intensive rehabilitation programs.
Even the best rehabilitation program cannot always get a person back to work. And a return to work cannot solely be the purpose of a rehabilitating intervention. Equally important is the goal of rehabilitating a person to the highest possible level of independence and activity of daily living (ADL) function.
The level of management and independence often sets the limits for a person's sense of self-esteem, purpose, control in life and quality of life. The lack of it can result in the feeling of hopelessness, frustration, isolation and poor quality of life.
Rehabilitation / prevention
A rehabilitation period can glide almost unrecognisably into the sphere of prevention. Since one can not expect full recovery it can be hard to define when one reaches the point where the rehabilitation must be considered completed and the phase of prevention begins.
A successful rehabilitation followed up with preventive measures does not secure a stable positive period, but it can most likely prolong it and possibly ease the next "bad turn".
Equally important as the person's own efforts to follow up the suggested activities or other measures is the continuous support from the health care system.
Defining rehabilitation
In Norway today's definition of medical rehabilitation is:
"... a planned, time limited process where different medical professions and institutions (and/or others) are working together in order to reach a set goal of achievement."
The intentions of making an individual plan for each person/patient covering all necessary actions and goals for the process is of substantial importance. So is the cooperation of all involved parties (doctors, physiotherapists, occupational therapists, nurses, representatives for the health insurance authorities, and others), including the patient.
But this definition does not fully secure the interests of people with rheumatic diseases. It carries the idea that rehabilitation is a one-time thing - you have a problem, fight it, reach the goal of recovery and are done with it. We fear that this idea in time will disturb greatly the coverage of our needs of life-long rehabilitation and the essential opportunity to "drift" or "alternate" between medical treatments, rehabilitation and preventive activities and measures.
People with rheumatic diseases need the assurance of easy access to adjusted rehabilitation programs, even for the 4th, the 5th or even the 10th time in their lives.
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