Report Allied Professionals Forum 2014


Health care providers of the ALS Centre attended the Allied Professionals Forum in Brussels. The purpose of the seminar was to exchange experiences and best practices to improve the care for ALS patients worldwide.

Presentations were about training films for physiotherapy exercises, explaining to children, supporting the mourning process of relatives, dealing with cognitive changes, contact with fellow sufferers, a workshop for caregivers, decisions concerning the end of life and a myoelectric orthosis. Here below you can read a summary of the presentations that were given that day.

Examing the impact of You Tube to teach patient care skills in ALS/MND

Reporter: Joanna Parren, occupational therapist at De Hoogstraat Revalidatie

Physiotherapists in America have developed You Tube videos so that patients do not always have to go to the hospital for physiotherapy. Travel distances can be big in America. That is one of the reasons why ALS patients do not visit the ALS medical team very often. The ALS patients can see the exercise or explanation again by means of the training films, which helps to let the information sink in better.

The videos take about six and a half minutes. The physiotherapist gives instructions and demonstrates the acts. There is for example a video about moving from a chair to a wheel chair and a video about the upper and lower limbs that keep moving.

The use of these videos has been researched by looking at how often the video was watched, and where and how long it was watched.

About a thousand patients had watched the videos. Most people only watched 44% of the video, but this can be explained by the repeating acts of the physiotherapists. The effect of these videos has not yet been examined. The videos are available at


- Video can be an effective way to demonstrate skills and techniques for ALS patients.
Online videos can get around a bigger area and have the potential to reach many patients.
The videos need to be short, with a maximum of three minutes.

What can we do with it in the Netherlands?

- Patients can ask their practitioner to make a video of the exercises so that they can see them again afterwards.
ALS medical teams can use standard demonstration videos more often.


Eyes that speak: Social inclusion, work dignity and life quality for ALS/MND patiënts

Reporter: Diet van Dorsser, spiritual counselor, De Hoogstraat Revalidatie

First of all, the attention was called to the recent news that Stephen Hawking’s operating system will be made publicly available through the internet in January 2015. Then, the presentation discussed the possibilities of communicating by means of an eye-controlled computer. The cooperation between Argentinian and Spanish enterprises ( were mentioned. This includes the development of an operating system that would strongly decrease the amount of eye movements that is needed to communicate.

Even though the system itself appears to be very simple, it might require some effort and perseverance to learn how to work with it. It also came up that learning new skills can be hard when cognitive changes crop up.

Use of myoelectric orthosis to enhance functional performance in persons with ALS/MND

Reporter: Joanna Parren, occupational therapist at De Hoogstraat Revalidatie

This was a presentation of a myoelectric prosthesis of an ALS patients by an American occupational therapist. Myoelectric prosthesis have been used for years for amputations. This technology has recently been integrated in an orthosis. This is specifically used with CVA and spinal cord lesion, but there is a small amount of patients that have ordered one themselves.

This orthosis is placed around the arm. The orthosis stimulates weakened muscles so that inflection and extension (bending and stretching) of the elbow becomes possible and it supports functional movement. The patient gives minimal contraction of the muscle and the orthosis strengthens this contraction in a complete elbow flexion to enable the patient to eat for himself or to take care of himself.

During the shooting of a patient, he was asked to take a bite of a biscuit. This would not have been possible without a prosthesis, but the myo-orthosis did make it happen.

No research has been done on the effect of using a myo-electric orthosis with ALS patients. It is important that more research is done about this. The myo-electric prosthesis does not seem to be a good solution for each ALS patient. A few comments can be made, like the weight of the orthosis (about 2 kilogram) in combination with shoulder complaints, core stability and strain complaints.

The orthosis can be found on

Executive function disorders: Engaging the team

Reporter: Kim Holtmaat, nursing specialist trainee, UMC Utrecht

From this presentation, it emerged that about 50% of the ALS patients undergoes cognitive changes and therefore experiences difficulties for following advice.

When in concerns cognitive changes, it is important that the ALS medical team:

  1. Informs the patient and his/her family well about this,

  2. Involves the family in the treatment,

  3. Trains the homecare team in how to deal with a patient that experiences cognitive changes.

Tips for patients with cognitive changes/FTD:

  • Plan something nice/useful.

  • Routine or a checklist.

  • Place things that need to be used (tools) near the patient so that he can see them at all times.

  • Give the patient the benefit of the doubt.

  • Do not make remarks too personal and try to be motivating (for advice, look for example at motivating conversation).

Looking Beyond the drug : a study exploring the experiences of ALS/ MND patiënts attending a drug trial

Reporter: Tamara Rouschop, occupational therapist at De Hoogstraat Revalidatie

For this study, patients were asked what they thought about the contact between patients during medicine research. Ten patients were asked to fill in a questionnaire about the participation in a group during medicine research.

Important advantages that the patients experienced:

  • Patients feel more self-confident.

  • Patients had the possibility to share personal stories.

  • Patients received a lot of support from fellow sufferers and the ALS medical team.

  • The contact with fellow sufferers was an important motivation for patients to keep participating in the medicine research.

  • Patients felt less isolated and had the possibility to share their fears with fellow sufferers.

  • It made the health behaviour improve.

  • Patients become more acceptable towards their disease by meeting fellow sufferers that are in different stadia of the disease.

Conclusion: Contact between patients within a group has a positive effect and patients consider it to be important.

Compassion fatigue and burnout: supporting staff with coping strategies

Reporter: Tamara Rouschap, occupational therapist at De Hoogstraat Revalidatie

Compassion fatigue stands for the exhaustion of a professional, because of a decreasing power and the care for others. As a professional, it is important to realize that ALS patients and their family members will not leave you untouched. By supporting the pathological process of several patients, a caregiver can get exhausted, both mentally or physically. This could probably make a caregiver less emphatic towards a patient, so it is important to prevent exhaustion.

In Southeast England, professionals and volunteers that work with MND/ALS patients are given workshops. The results of these workshops are:

  • Professionals know better what compassion fatigue is exactly after the workshops.

  • They know how to recognize signals of compassion fatigue.

  • They know better what to do about it.

  • The organization (e.g. a rehabilitation centre) does better to occupy itself with the risks of compassion fatigue.

  • Professionals adapted their method.

As an organization, it is good to know that working with ALS patients can do a lot with the employers mentally and to know how to prepare your employers for these risks. I believe that it is good that this is a point of interest for yourself as a professional.

Developing a comprehensive and candid guide on end-of-life decisions for people with ALS/MND

Reporter: Kim Holtmaat, nursing specialist assistant, UMC Utrecht

Decisions concerning the end of life are always hard and very emotional. Research in England showed that patients and their family and direct caregivers want to be prepared better.

Therefore, the MND Association developed a book with information about these decisions. The patient will not immediately be provided with this book, but s/he will be given a flyer that contains some information that prefaces the book. This book cannot be taken too literally in the Netherlands because the rules and laws about the final stage of life are different here. The book can be found here.

Emotional legacies: What children need to know and how leaving it for them assists closure

Reporters: Joanna Parren, occupational therapist at De Hoogstraat Revalidatie and Diet van Dorsser, spiritual counselor, De Hoogstraat Revalidatie and Kim Holtmaat, nursing specialist assistant, UMC Utrecht

For five years, from 2007 till 2011, 100 people that lost one or both of their parents before reaching the age of 16 were interviewed. They were asked a few series of questions about their loss and their educative, social and professional development. Furthermore, they were asked which questions they would like to have an answer on of their deceased parent.



  • The interviewees would like to talk (more) about the approaching end of life with their parents.

  • As a child, all interviewees would have wanted more information about the disease and the death of their parent.

  • It is important to see and hear from the parent himself. It is not enough when a third person talks to the child.

  • As a child, the interviewees needed more information about what happens when you pass away.

  • The interviewees would like to know more about their deceased parent. For example, how it was like before, what is your favourite book, perfume, food, etc. (‘Colour of life’).

  • The need for information about what is expected from them after their parent passes away. How should they mourn, and for how long?

The speaker also mentioned that the research showed that children would like to hear (very) personal messages from their deceased parent. Messages that indicate what the child means for the parent. For example, ‘I enjoy seeing you at the swing’. Or ‘I thought you were great – it always made me happy when I saw you – and that is why it is such a pity that I have to die now’. It is not only about information about the parent himself, but also more about the relationship between parent and child, and how the parent experienced the child.


  • Start conversation between parent(s) and child about the decease earlier.

  • Leave something behind, like a book or video, for the child, in which the parent tells about himself.

Apps for parents and children

As a result of this research’s outcome, an app has been developed with which the patient can leave behind a message for his/her children: Recordmenow. With this app, the parent can leave behind information, stories and advice. This app contains standard questions for the parent about his youth, work and relationships, but more questions can be added. Eventually, it is possible to burn all the information on a DVD.

Find more information on

The ALS Liga also has brochures about ALS for children.


Exploring experiences and awareness of bereavement support in family carers of people with ALS/MND

Reporter: Diet van Dorsser, spiritual counselor at De Hoogstraat Revalidatie

This presentation paid attention to the complexity of the mourning process of ALS patients’ carers. Diverse factors play a role in this, like:

  • The long series of loss experiences that precede the death of an ALS patient

  • Carers could not or did not want to make a lot of time for themselves during the period of care (for example because they felt guilty when they did not say with the patient).

  • The contrast between the daily intensive care for ALS patients and the ‘empty-handedness’ after the decease.

  • The contrast between intensive contacts with professional caregivers or other carers till the moment that the patient passes away and the quietness/silence after the patient’s death.

Research shows that for these reasons, the mourning process of ALS patients’ carers (‘complicated grief’) is often harder than assumed. The development of questionnaires that might help to map the situation on time is a prominent matter at the moment.



Here you can find the programme of this yearly congress day of the international Allied Professionals Forum. This day always precedes the international MND symposium. In 2015, the MND symposium and the Allied Professionals Forum will take place in Florida, the United States.


Translation: Annemie