Acquiring a major neurological disability as a result of a spinal injury, an acquired brain injury or a neurodegenerative disease always involves significant changes in a person's life and in his/her next of kin’s. From the time a patient is admitted to Institut Guttmann - which should be as soon as possible after injury diagnosis - both patient and family receive the most appropriate specialized medical care. Thus complications are avoided, patients are helped to understand and manage their new situation and the specialized rehabilitation treatment begins immediately.
When patients and their families become aware of the disability and have to unexpectedly face the undesirable facts, the care team strives to provide the necessary guidance and emotional support. In these particularly difficult moments, the team helps patients and families to face the changes caused by this new physical status and to deal with the new cognitive status implied by brain damage affecting the patient’s higher functions (speech, memory, concentration, etc.) or behaviour.
Every-day tasks, such as having meals, brushing one's teeth and getting dressed, may be difficult. Tasks such as getting used to wheelchair driving; learning to walk (when possible) using sticks, aids, or parallel bars; and making progress in personal and social skills to cope with the new disability require active participation, a lot of hard work and perseverance.
Patients need time, motivation, orientation and support to face the personal, social and family effects of their new physical and cognitive status. This is why it is essential to establish a high degree of trust among the patient, his/her family and the care team. Honest and free-flowing communication contributes to achieving and understanding rehabilitation aims. Such communication is just as important as drug treatment and physical and neuropsychological training.
Living together with other longer-term patients and their families and sharing information with them is also a very positive aspect of the rehabilitation process. It enables new patients and their families to discuss various ways of living with functional limitations. It promotes mutual help and offers various benchmarks and models which may be useful when making decisions about the new situation.
During treatment and with the rehabilitation team’s supervision, the patient will gain enough experience and confidence for as much an independent life as he/she can afford both in terms of daily life and community tasks. Depending on his/her interests and resources, the patient may begin to play an adapted sport (basket-ball, swimming, tennis, fencing, athletics, etc.) and take part in group outings as well as social and cultural activities. If desired, community volunteers and spiritual help services are available on request.
Depending on their health status and distance to home, patients may return home for the week-end. This will stimulate socializing, contribute to ease off adapting to the new situation and help them to get ready for discharge back home again.
Before discharge, the patient and his/her family train in going back home with the help of the therapeutic team. They receive information on various aspects, such as health maintenance, complication prevention, sex life, technical aids, home adapting, moving about town, community resources, services best fitting each situation and other community resources. Furthermore, when necessary, caregivers and providers (practitioners) taking care of the patient at home will be counselled, taught and trained.
Patients are right to desire treatment conclusion and leaving the hospital but, at the same time, depending on each patient’s circumstances, they may also feel somehow insecure. There are many associations for patients, the most important of which are in Institut Guttmann. They support and orientate during this period and at home later on and offer very interesting services, guidance and back-up help.
The patients, their families and the remaining health and community system resources can also counsel with Institut Guttmann’s Specialized Support and Assessment Community Health Team. Members of this team travel to the patient's home or, when distance advises against it, e-mail or phone him/her. The team plays a consulting role, contributing to continuity of and to community and health care as required.
When the patient is back at home, he/she and his/her family will tap the resources and general services available in the surrounding area. In addition, they can trust Institut Guttmann’s care team to face any incidental difficulties from their disability. It will try to find the most adequate solutions or alternatives for each situation.
Finally, it will periodically be necessary for the patient to go to hospital for a “specialized comprehensive check-up”. The recommended frequency of such check-ups is contingent upon each case. This is a preventive measure aimed at reducing the incidence of health complications and at increasing the clients’ quality of life.
The follow-up of people with a spinal injury treated at our hospital shows that, after a reasonable period, most of them feel satisfied with their lifestyle and psychologically well. A high percentage of them either works or studies on a full or part-time basis. Some of the young patients have a family or start living on their own off their family home.
The follow-up of people with brain damage sequels treated at our centre usually gives results similar to those above. However, results worsen with more severe consequences. It is clear that acute cognitive consequences, with personality and behaviour disorders, cause very complex and specific situations. They require longer periods of professional counselling and monitoring, as well as specific community and health services for the supervision, protection and support that both patients and their families need.
Regardless of the severity and nature of a neurological disorder, patients and their families have the right to run a full life, to play their role in their community and to help to make it fairer.