Neuromuscular reference centers (NMRC's)
What is the NMRC?
People with neuromuscular diseases often need help from different angles: neurology, rehabilitation medicine, social assistance, physiotherapy, occupational therapy, psychological support, etc. Since 1999, a number of centers have been recognized by RIZIV that provide such multidisciplinary assistance to neuromuscular patients. They are called neuromuscular reference centers (NMRC).
In the operations of NMRC two phases can be discerned: Diagnostic and therapeutic.
During the diagnostic phase they look for the exact nature of the neuromuscular disease and they examine which treatment can be helpful. In this phase, patients are examined for neuromuscular disorders. This phase is often completed by consultations between neurologists, geneticists, and pathologists.
During the therapeutic phase, the focus is on monitoring and treating the patient and care is being provided by a multidisciplinary team that is always at the patients’ service for any questions. They attempt to offer a tailor-made care program to every patient.
The multidisciplinary consultations take place on Tuesday and Thursday.
The aim of NMRC
The NMRC guarantees quality care to people with neuromuscular diseases in terms of diagnosis, treatment and counseling. This care is provided by a team of experts from all disciplines required.
The aim is to offer a better prognosis and better quality of life to the patient through close cooperation, building experience, and encouraging scientific progress. It is all about a care scheme for life.
Living with a neuromuscular disorder means living with a disease that often entails growing limitations, is incurable and sometimes hereditary. The expert team is ready to help you and your family with specialized advice and monitoring to help you live as healthy a life as possible.
The neuromuscular team for adults consists of a neurologist, a pulmonologist, a rehabilitation specialist, nurses, a physiotherapist, an occupational therapist, a psychologist, a social worker, a speech therapist, a nutritionist, and administrative coordinators.
A neurologist’s mission with neuromuscular disorders is first and foremost trying to make a diagnosis and informing the patient and family about the course of the disease. The diagnosis is made on the basis of the story, family history, clinical findings and additional tests.
Often, a muscle biopsy is required in order to establish the diagnosis. To this end the neurosurgeon removes a bit of muscle under local anesthesia that is afterwards examined under the microscope. Other tests include blood tests, radiological examinations (scanners) and electrophysiological function measurements (EFM).
A causative or curative treatment is still lacking for most muscular diseases and nervous disorders. Sometimes however, the neurologist will prescribe medication to slow down the disease process or combat annoying symptoms.
Certain neuromuscular disorders do not just affect the arm and leg muscles. Sometimes the respiratory muscles are impacted in the process. This in turn leads to symptoms such as shortness of breath and difficulty lying down, but on the other hand it may also induce early morning headaches, loss of appetite and sleep problems with fatigue during the day.
At that precise moment the pulmonologist becomes involved in the care of the neuromuscular patient. On the basis of pulmonary function research he / she will assess to what extent the neuromuscular disorder limits respiratory function.
When this function is too severely compromised, he / she will propose to start a treatment with nocturnal respiration (ventilation). This means that with each breath additional air is blown into the lungs through a device via a mask placed on the nose. This way, oxygen levels can remain normal, and what is hazardous can be exhaled.
This treatment is used mainly at night, but sometimes ventilation is also necessary during the day as the disease continues. Again, we will not cure the disease with this treatment, but we can ensure that symptoms that can seriously affect quality of life are relieved a bit.
The rehabilitation specialist
This is a doctor who coordinates the operations of the multidisciplinary team in terms of consultations, patient discussion and rehabilitation report.
In an interview with the patient and family, he / she will try to get a general impression of the level of functioning, existing medical problems and living problems. Along with the other team members and the patient, the doctor will seek possible solutions to those difficulties. Specific attention will be given to the symptomatic approach of for instance pain, stiffness, depression or fatigue. The medical aspects of sound and / or adaptive driving are discussed as well.
The rehabilitation specialist is also responsible for formatting and writing prescriptions and certificates necessary to obtain exercise therapy, medication, tools and social benefits.
When written communication is inadequate, the rehabilitation specialist will call your doctor with your permission or by your request in order to streamline medical supervision.
For every person who consults NMRC a coordinating nurse is designated. This person acts as a permanent contact point for the patient, family and primary caregivers.
During an introductory conversation, he / she will present the team and inform you about the operations and objectives of the center.
He / she will then discuss the current care situation at home in order to identify current needs and questions when it comes to care. From this starting point he / she will direct you to the right expert within the team to work in as problem-oriented a manner as possible.
During the next consultation he / she will monitor the existing problems with you and call in the relevant team members for further evaluation and advice.
Between the consultations your coordinating nurse is available for any questions.
On the basis of an interview and motor examination the physiotherapist will evaluate the problems you experience while moving.
He / she will inform you about the type of exercise therapy or sports activity that is appropriate for you. He / she may join forces with your family doctor to look for an appropriate therapist in your area. If you are already being treated by a physiotherapist, he / she will propose amendments or additions to the program if necessary. Mutual exchange of information between our therapist and the home physiotherapist is being pursued. For home therapy related problems the treating physiotherapist can also turn to the center for advice.
For walking problems he / she will look for a suitable tool such as a crutch, walker, splint or appropriate footwear with the occupational therapist.
The occupational therapist
For some time you may have experienced that daily activities such as washing, dressing and eating require more energy or assistance. Muscle weakness or fatigue can prevent you from functioning actively and independently.
The occupational therapist will help you find ergonomic techniques and practical tools to function as autonomously as possible. During the consultation, for example back-sparing transfer techniques can be taught and practiced with your partner or caregiver.
In the existing range of tools he / she will analyze for instance what eating utensils you can take to regain your independence at the table or what lift system will enable your partner to safely put you in the bath or in bed again.
If walking becomes difficult the physiotherapist along with the occupational therapist and possibly a tool provider will assist in identifying a suitable walking aid and / or trolley.
If adjustments in / to the property are necessary, the occupational therapist will explore the actual possibilities with you during a home visit. The occupational therapist will also make the advisory reports to obtain financial contributions through VAPH (Flemish Agency for Persons with Disabilities).
The center is a recognized MDT (multidisciplinary team) for compiling the file for IMA (individual material assistance) for VAPH …
Upon your request or on the advice of one of the experts on the team, you (and maybe your partner or family member) will be invited for an interview with the psychologist. The reason for a referral to the psychologist is usually dealing with the past. In a first interview with you (and possibly your partner or family member) consideration is given to potential problems to get over the past (anxiety, depression, denial, anger). In addition, attention can be given to for instance communication within the relationship or family, relational problems, the heredity theme, problems at work, either sufficiently or insufficiently experiencing comfort...
The psychologist of NMRC does not provide intensive psychological counseling himself. If at the end of the conversation it turns out that you need intensive psychological counseling, a psychologist will be sought in your area, possibly in cooperation with the family doctor. In some cases the advice to consult a psychiatrist is also given. If desired, this also happens after consultation with the general practitioner. If psychological monitoring in the NMRC is sufficient and is desired, a new interview will be planned during the next consultation of NMRC.
The social worker
Life with a neuromuscular disease can entail relational, social, practical and administrative problems for you and your family members. The jumble of social regulations and services is likely to arouse a lot of questions for you.
The social worker will advise you on the social services you are entitled to and guide you through the necessary paperwork for that.
Also he / she will ascertain, along with you, if and what kind of professional home help can be started to take over several daily activities. Local services such as health insurance, home nursing and family assistance can be contacted to assist you and / or your partner materially, emotionally or practically at home.
In the conversation with the social worker there is also room for feelings of fear, anger or frustration that may result from physical and social limitations that have been experienced.
The speech therapist
The speech therapist will try to examine whether and to what extent there is a problem when it comes to communication (speech intelligibility, articulation, voice ...) and / or swallowing. If possible and appropriate, a treatment plan is proposed.
If one or more aspects of speech are affected, he / she will check whether you are already using the most efficient way to make yourself understood. Sometimes he / she will advise you to begin speech therapy in order to optimize this speech process for you and your environment. If intelligible speech is no longer possible, he / she will search for alternative communication tools with you.
As far as swallowing is concerned, he / she will carefully inquire about your current food intake and potential negative symptoms (choking, long meal duration, feeling of obstruction, food changes ...). He / she will also observe swallowing itself during the consultation. He / she may suggest an additional radiological examination to determine if swallowing happens in a safe manner. If there are any problems the speech therapist will look for optimal food consistency, attitudes and swallowing techniques with you to make eating and drinking as safe and comfortable as possible.
The dietician will provide practical advice about nutrition. Depending on individual need or demand it may concern calculation of intake or energy need, adjusting current nutrition, tips for food preparation, product information, ...
After placing a PEG tube he / she will give information about the type and amount of tube feeding, the materials and the reimbursement.
The administrative coordinator
The permanent secretariat of the NMRC is usually the first point of contact for the patient.
Depending on demand they can continue to arrange appointments in a targeted fashion or put people through to the right person on the team.
After the weekly team meeting they arrange for further coordination of appointments with the various therapists of the NMRC or appointments in other departments so as to offer optimal support. The administrative correspondence that results from that, including planning and sending appointments, sending certificates and so on, is also taken care of by them.
They also provide administrative support in compiling and monitoring the files for the VAPF (Flemish Agency for Persons with Disabilities).
Of course you can always visit the neurology department of the hospital in your area or go to the local neurologist.
Practically you dial the number 1207 (or go to http://www.1207.be/), you mention the desired town and within seconds the operator will give you the number for on-call duty, to which you can automatically be put through if you so wish.
General practitioner home visiting free for palliative patients
Palliative patients who receive a visit from their GP at home or in a palliative ward of a hospital do not have to pay co-payments any longer as of July 1, 2002. To be eligible for this measure a certificate from the family doctor is sufficient.