MND Association Trustee, Julie Draper, attended the International Alliance of ALS/MND Association’s Allied Professional Forum (APF) yesterday. This one day event aimed at healthcare professionals had a number of inspiring talks; including one by Association-funded researcher Dr Christina Faull based at the Leicestershire and Rutland Hospice – LOROS.
Here Julie blogs about her experience:
“I’ve had a fascinating day at the APF. We had an early start, with the first session dealing with the important topic of non-invasive ventilation (NIV). One of the speakers presented a paper questioning the standard use of percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG) with regard to respiratory function. This raised a lot interest amongst the audience and the questions even carried on through coffee.
“The session before lunch was really excellent covering caring for professionals, people living with MND, carers, and the care of young children of people living with MND. Each presentation was a slightly different model for treatment.
“The overall feeling of the audience and presenters was how important it is to empower the patient or carer. If people living with MND and their carers feel more in control then they are likely to feel better, and more confident in obtaining the treatment and care they need, not to mention being able to live their lives to their full potential.
“One presentation close to my heart in the afternoon was from the Lancashire Teaching Hospitals Trust where the presenter described the work of the occupational therapist (OT) in picking up and managing cognitive change. Another was a presentation on the role of Palliative Care occupational therapy, showing how the practitioner can help people living with MND avoid the pain and isolation which this devastating disease brings. Two seater riser-recliner chairs, double electric beds, stair lifts, mobility scooters were all very popular with families and generally facilitated more cuddles in one way or another!
“Finally there were two presentations on apps, gadgets and gizmos – some great new imaginative additions now on sale and not all of them expensive.”
Julie also attended our networking event on Thursday 5 December to get to know some of the international MND research community