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1. Jan, can you tell us something about yourself and how you got involved in the care of people with severe acquired brain injury and LBS?

"At the end of the 70s, through an internship in a nursing home, I first came into contact with a young resident who had been in the wrong place at the wrong time. Due to an accident, he had suffered such serious brain damage that he had opened his eyes after a coma in the hospital, but had not regained consciousness. He had been in the nursing home for many years, with no prospect of recovery. After graduating as a doctor, I saw more of these fates, when I worked in a nursing home in a special department for people with severe ABI and LBS in the mid-80s.

In 2005 I obtained my PhD on people whose consciousness had not returned after many years in nursing homes. After that, this subject did not let go of me and it became my mission to develop knowledge and thus improve healthcare."

2. What was the care for people in a coma and LBS like at the time?

"At that time, for the first time, people ended up in nursing homes who could survive the comatose phase in hospitals. This was due to advances in medicine and technology, such as intensive care and later trauma helicopters. The available scientific knowledge was limited to that comatose phase in the hospital. There, these people lay with their eyes closed on all kinds of supporting equipment in an intensive care unit. If they survived that phase, they were waiting to be transferred to a nursing home at the time. In the hospital they were out of treatment, rehabilitation did not yet exist and in nursing homes these young people were scattered among vulnerable elderly people in a hopeless situation.

The lack of knowledge about the phases after the hospital, the dilemmas and feelings of powerlessness of professionals and loved ones became the driving force of my mission. I worked together with fellow pioneer Henk Eilander, who developed and researched Early Intensive Neurorehabilitation for children and young adults. Two worlds of rehabilitation and nursing home care then came together."

3. You set up the research group "No one between two stools". What does this research group do?

"We develop, share and disseminate knowledge to improve the care for people with severe ABI in general and LBS in the
particularly improved. The group was founded in 2012 from the specialty of geriatric medicine (called nursing home medicine until 2009). That specialism only exists in the Netherlands, so that we can do research in nursing homes here, also for young people. And we connect that with practice, education and training.

For this connection, we set up the Expertise Network for Serious Acquired Brain Injury after coma, EENnacoma, in 2016. We work together with various nursing homes with ABI departments and a specialized rehabilitation center. That collaboration is unique in the world, as is the LBS chain that has been developed together. There is increasing interest in this from other countries and we are happy to share our knowledge."

4. Since last year, a Knowledge Center for people with LBS has been recognized with multi-year funding. How did that come about?

"This has been achieved in the aforementioned VWS process for Low Volume High Complex (LVHC) target groups in long-term care. After writing various reports and an independent visitation, the LBS Knowledge Center has fully met all quality criteria in 2023. This has resulted in a multi-year subsidy. The LBS Knowledge Centre works closely with an LBS Target Group Network Association established in 2023. This includes various LBS target group expertise centres for Long-Term Intensive Neurorehabilitation (LIN) and regional LBS expertise centres for chronic care. For us and everyone involved, this milestone is the result of a long road. For me, LVHC means Persevering Long with High Compassion."

5. How does the LBS Knowledge Network relate to the EENnacoma expertise network?

"The LBS knowledge network with the knowledge center and expertise centers focuses on LBS in long-term (LVHC) care. Within EENnacoma we also work together with a specialized medical specialist rehabilitation center for people with LBS, in the treatment phase prior to long-term care. EENnacoma also focuses more broadly on people with severe acquired brain injury who have regained consciousness. So that the fragmented healthcare landscape can also be connected through passionate collaboration for that broader target group."

6. On the website of EENnacoma there is the Guide to LBS, which clearly describes all the steps in care that can be taken for people with LBS. An example of extensive and clear information for those involved and care providers. How did this signpost come about?

"That Guide was developed by EENnacoma in collaboration with Vilans within the project 'Chain development for people with LBS'. This project is funded by the Brain Foundation. The Guide is an answer to the great need among relatives and caregivers. In addition to this Signpost, other developments have also been made possible in the project, such as a Mobile Expert Team (MET)-LBS, a development agenda for relatives and research into the number of people. with Minimal Awareness."

7. In what way is our patient association involved in (the development of) the care landscape for LBS?

"Hersenletsel.nl involved in all developments. We worked together on (research) projects and in the Chain Development for People with LBS project. From the start of the LBS Target Group Network Association in 2023, Hersenletsel.nl has been represented on the board, together with directors of our LBS expertise centers in long-term care. Recently, it was discussed how we can further shape the cooperation from the Knowledge Center in the field of information for employees of Hersenletsel.nl, contact with fellow sufferers and the establishment of a relatives panel or sounding board group. We want to involve as many people as possible who experience it in practice. Because that's where all the knowledge and experience must ultimately be noticeable in everyday care. So that no one with LBS has to fall between two stools. Thanks to all those who make that possible."

Colon

Editor: Mieke Hamaker
Final editing: Hersenletsel.nl