Multiple Sclerosis (MS) is a neurodegenerative disorder affecting mainly young adults, second to road accidents and heart conditions. MS often will disrupt an individual’s life style insomuch as it throws a wrench in the works at a key time in life when at the point of building a family or about to finish college and enter the work force. I may also seriously hinder a person’s career often because of the lack of awareness companies have about MS.
MS will require different and varying levels of care depending on what phase of the disease a patient is. This usually is in contrast to other neurological disorders, which may require individual actions and a lower frequency in follow-up visits. MS is characterized by a need of close, specialist, multidisciplinary follow-up that is recommended right from the onset of the disease.
Care in MS must be delivered in a holistic way by a multidisciplinary team including neurologists, neuropsychologists and speech therapists, MS nurses, physical and occupational therapists, social workers and home care and daily help staff for ADLs. It is mandatory that every team member be specialized in MS.
In clinical diagnosis, follow-up, and treatment neurologists play a key role that is compounded by the follow-up care services of MS nurses. Their work spans beyond the day hospital where, generally speaking, IV drugs are administered. However, MS nurses in Spain do not have a formal training environment to resort to even for education based on evidence and current knowledge applied to MS. The Spanish MS nurses working at top MS centers and hospitals have very much self-trained into specialist care through personal experience and sharing of experiences at scientific meetings, of which there are but a few. The Spanish Society of Neurological Nurses (SEDENE is its acronym in Spanish) has organized a number of workshops and meetings aimed to this end and the pharmaceutical industry has also made important contributions toward building a core of current knowledge in MS nursing through sponsoring.
However, each professional’s work environment is different, which makes their experience very diverse notwithstanding the fact that the final end remains the same for all: that of providing the best quality of care to each person with MS and their families attending to individual needs and clinical characteristics. Hence, MS nurses in Spain will have the following work environments.
Outpatient clinics in general neurology practices. They will usually be found in hospitals with a small number of beds and care level below III. There will not be a MS specific nurse. This may well take from the benefit of the comprehensiveness and accuracy a specialized professional can attain.
The number of MS specific centers in Spain is scarce even if many hospitals do have a Neuroimmunology or MS Unit within the Neurology or Internal Medicine Departments. The largest center in Spain that is devoted to MS patients is the MS Center of Catalonia (Cemcat), within the Vall Hebron University Hospital in Barcelona, where the author of this piece has the honor to work. With Prof. X. Montalban as its director, the configuration of the Cemcat is comprehensive incorporating a Neuroimmunology Department within the hospital, a Neuropsychology unit, a Clinical Trials unit, a Neurorehabilitation unit including social work, Basic Research laboratories, and a Medical Education unit.
The role of the MS nurse at Cemcat starts when a patient comes in for a diagnostic visit and interview. It is the nurse’s responsibility to welcome each individual and their families accompanying them at such a restless time. The MS nurse strives to minimize the angst before receiving the news after a first clinical event usually derived by and ophthalmologist or identified in the ER.
For patients coming out of the neurology visiting room where diagnosis of MS or probable MS has been given thus providing early reassurance and an environment that is designed to upkeep and improve their health-related quality of life, the MS nurse steps in to reinforce the messages they have received often a blurred image that needs some parsing.
At that or a later time, a drug for the treatment of MS may be prescribed. On this, the MS nurse takes a central role in reinforcing the knowledge about the drug; often a patient will have a choice from various immunomodulatory drugs. After the initial prescription a MS nurse-lead educational activity is approached.
Education will increase adherence and compliance to a very important degree as several informal studies have proved. On the other hand, where a MS clinic or center does not include a specialist MS nurse the said compliance and adherence levels fall drastically. On a daily basis, the MS specialist nurse can provide planned care and follow-up, counseling on medication and its effects as well as identify possible relapses while channeling each situation through to the adequate professional, also on the hospital panel.
On a patient’s initiating a given therapy, while the 101 session makes sure that education serves all the technical and safety provisions, the MS nurse has a duty to reinforce knowledge and awareness about the disease that can assist in self-identification of signs and symptoms, telling a relapse from other manifestations. This will allow a patient and their relatives focus on maximum compliance with treatment. The next step in educating patients new to a given drug is providing easy to understand messages about the benefits and the possible side effects and adverse events of the therapy keeping expectations within a realistic and positive attitude framework. Finally, every patients is given useful materials to comply with medication and contact details to reach us through the phone or by email that will allow to deal with a situation before coming in for an unscheduled visit or resorting to the ER which may not be the solution at hand. This notwithstanding the regular scheduled visits as per therapy and MS protocols in place at our MS Center.
The MS specialist nurse working in MS centers in Spain will also have a role as investigational nurse collaborating in clinical trials as per each protocol. Besides recording vitals and administering research drugs, the MS nurse has once again and educational and follow-up role to ensure that the patient stays within the study protocol. For some trials the notion of ‘placebo’ needs to be carefully explained and close monitoring needs to be undertaken of side effects to be referred to the treating physician and recorded in the study records.
Our MS Center has a day hospital where patients can come in to receive their medication, take down of vitals, and counseling. In contrast to generic day hospitals, the same specialist staff will be working in our MS facility ascertaining homogeneity and continuity of care. Teamwork will also allow for better assessment of each case through cross-examination and second opinion. Networking with the nurse professionals of other departments, such as urology or nutrition, will also ensure better quality continued care. Not least, plain conversation about any given situation the patient and their families, the art of listening out and understanding, may help overcome one given problem or setback that may limit self-care or adherence to medication.
One important unmet need for Spanish MS nursing is the official academic and certification recognition of this specialty that can be extended to every other neurodegenerative progressive disease, often chronic and lacking a definite cure. There are several projects ongoing for quite some time now on an international contexts as well as in the EU that seem to fail overcoming national limitations. They are nevertheless required to make every effort cohesive while in parallel upkeep continuous learning.