A critical look
My involvement of people with MND is usually in the earlier stages. I have experience at the diagnostic stages on an acute neurology ward, but also early on in the diagnosis, via outpatients splinting and in a Neurological Inreach team across the whole hospital. Our first port of call on the acute ward was to involve the MND team and to communicate to them details about the patient. I had close communication and contact with the specialist MND AHPS when one of their patients became an inpatient as was cared for under the Neuro Inreach team I worked for. This communication was essential as often the patient's arrived in a rush without the equipment they required. We had a direct line of contact with the MND team and their advice and contact was invaluable, so we as grass roots team could implement things quickly. This was a textbook example of team working and highly valuable. However, the communication may not always be so direct and timely between ward staff and the MND team/ neurological in reach team. In the fast-paced acute environment patients can get "lost" and their needs not met in a timely manner. I believe the guidelines mostly refer to if the patient is in the community setting, rather than hospital admissions- which are often on an emergency basis and unexpected. I believe this is where the challenges lie. A useful tool would perhaps be a passport- which follow the patient wherever they go- which includes information on equipment they require, pressure care, wishes/desires, and what is usual for them regarding bladder/bowel and nutrition. This could provide a quick and easy "one stop shop" for patients admitted onto general wards.
Hi Jen, thank you for sharing your perspective from working in acute care. There are definitely some challenges I hadn't considered from the acute care perspective regarding communications. From a community perspective, there are also some difficulties with communications due to the mix of community-based and clinic-based health professionals working with the person. And often the community-based health professionals work for different companies, being a further barrier to timely communication.
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