Crisis management: when lack of proactivity leads to emergency

Event Notes:

MND sometimes presents crisis to those affected – including to the families of people with MND and professionals. Each crisis is a unique mixture of biological, psychological and social elements, from a sudden change in symptoms or in carers, to a restriction on services which delays responses to equipment and adaptation needs. During this event, clinicians will share their experiences supporting people with MND facing a crisis, offering valuable insights for other MDT professionals.

The session will consist of three presentation and discussion groups.

Session one – The voice for a person with MND who did not want a gastrostomy

The NICE guideline for MND states that professionals should be aware that some individuals may not want a gastrostomy. This was the case for a woman with bulbar onset MND, whose decision led to a crisis as those closest to her struggled to accept it. Caroline Mathias, Highly Specialist Occupational Therapist in Neurological Rehabilitation at the Royal Hampshire County Hospital, will talk about how she acted as a voice for the person with MND and facilitated family meetings to enable open and honest communication, easing fears while respecting the wishes of the person with MND.