After the ALS diagnosis

“A few years ago we did a survey of the care of patients with ALS and saw some shortcomings, including it taking too long to get a doctor's appointment and access to the right people and examinations. Then we changed our way of working and started what we call fast-track ALS,” says Katarina Johansson, nurse in the team.

The ALS team at Sahlgrenska University Hospital, SU, consists of a doctor, nurse, curator, speech therapist, dietitian, occupational therapist, physiotherapist, neuropsychologist and pastor. Patients can leave a message via voicemail and someone on the team, usually the nurse, will get back to you as soon as possible.

Fast Track ALS

The initial symptoms of ALS can vary between patients, which can make the disease difficult to diagnose. It may also take a different amount of time before the patient comes to the ALS team. The fast track means that there should be room to quickly get a complete investigation for the possibility of a diagnosis.

“We have one doctor's appointment a week blocked for new visits. As soon as we have received a referral from a health centre or specialist hospital, the patient should have the opportunity to see a doctor.

Damaged nerve cells

ALS is a complex disease and requires several different types of tests and tests to make a diagnosis. One of the first samples taken is on the patient's cerebrospinal fluid, that is, the spinal fluid.

“The test shows the possible extent of damaged and dead nerve cells. Damaged nerve cells can also be due to other factors, such as if the patient has suffered a stroke, but an abnormal value strengthens the diagnosis for ALS.

The doctor also conducts a neurological examination to, among other things, examine the patient's neurological status and listen to the patient's medical history.

EMG

Another examination that is carried out is electromyography, EMG, which examines the contact of the muscle with the nervous system. Also, an examination with a magnetic camera, MRI, is carried out to rule out other diseases of the nervous system, such as stroke or brain tumor, for example.

The ALS team at SU has booked appointments for EMG and MRI examinations. It is a prerequisite for being able to quickly investigate the patient. When the patient, together with relatives, comes for a return visit, both the doctor and the nurse are involved.

“It is our experience that both professions are needed in the meeting with the patient and relatives. It is very different how patients and relatives receive the news about ALS. Most people know that it is an incurable disease that produces a shortened life expectancy and an ALS diagnosis creates many emotions in those affected.

Return visit to the curator

Within a few days of the visit, Katarina follows up with a phone call and offers a return visit together with the team's curator. There are often additional questions once the message has landed and perhaps questions of a more practical nature such as the upcoming need for home service or travel service.

“Then sometimes the whole family comes and it is important to be flexible in the conversation. Everyone is different and how much information they want and can absorb so close to the message.

The ALS team also includes nurse Anneli Ozanne, who researches in nursing and specializes in quality of life, well-being and support for the family, including both patient and adult and children as well as relatives.

Focus on the children

“Some of our patients are younger and have children and for us in the team the child perspective is extremely important. It is about working prevention and including protective measures for the children.

The team arranges regular meetings for relatives. On six occasions in two hours, up to eight relatives meet to talk together with the curator and pastor about the questions and thoughts that exist. On each occasion, someone on the ALS team visits the group.

ALS affects everyone

“A disease like ALS affects relatives, and not just the person affected. We have seen how important it is that relatives have the opportunity to meet others in the same situation in order to be able to freely talk to each other from this perspective.

As enrolled in the ALS team at SU, the patient generally has revisits every three months but it can also be more frequent or less frequent based on the patient's needs.

“Our strength as a cohesive ALS team is our close cooperation between us. This means short decision-making paths and offers patients and relatives a great deal of accessibility and creates a form of stability for all concerned.

Writer: Elisabeth Nore