The APF precedes the International Symposium on ALS/MND by one day, but still attracts a global audience. It enables professionals from a wide range of disciplines to gather from around the world and share experience on the treatment and care of the disease. I had the privilege of presenting at the Brussels APF three years ago and was delighted to have a second opportunity at Boston.
There is an increasing buzz as people arrive – not just because of volume (260 attended this time), but as professionals greet old friends and make new acquaintances. No need to urge the crowd to network at this event, as this is the common goal. Everyone is thirsty for knowledge and to see where their work sits in wider ALS/MND practice.
As the presentations begin (18 in total – quick fire 15 minute sessions to maximise inclusion and spread of subject matter) personalities rapidly emerge. There are the confident speakers, the slightly wary, the humorous, the very serious and the enthusiastic. The consistent element though, is eagerness to share their work, but each individual is noticeably more relaxed after completing their turn! There is almost an audible sigh of relief as speakers return to their seat. I fear mine was actually out loud.
I talked about the development of our new Eating and drinking guide for people with ALS/MND. The presentation focused on how quality of life information not only assists wellbeing, but also gently introduces content to assist conversations on timely decision making. Other presentations from the UK included a session from Rachel Boothman from the MND Association, which explained how they have promoted the NICE guideline on MND, which makes recommendations to professionals on the treatment and care for people with MND, and support for carers. Another looked at the ‘power of doing’ for people with MND, reflecting a study in North Wales which considered how the challenge of mild to moderate exercise in normal daily routines can have a beneficial impact on positivity and quality of life for people with MND. We also heard from Faith Hodgins from Edinburgh, who spoke about the effectiveness of masterclass training, for professionals to use the Edinburgh Cognitive and Behavioural ALS Screen (ECAS) which identifies changes in thinking and behaviour with MND.
There’s always a stand out session too. What that is depends on your own perspective of course. For me, this year, it was the Israeli development of an eye control device for people with severe communication difficulties (where using standard eye gaze software may become impossible). The eye control head gear can be worn at all times, does not require calibration and can work on audio selections. It works even when you’re lying down or wearing spectacles, and means that patients who are ‘locked in’ can still tell someone their needs and decisions. Finishing beta stage, this is hopefully coming to market in 2018. This is the heart of the APF – where innovation and inspiration meet.
There are sessions of course, where the content doesn’t feel as new. For example, where service improvements are the message, but with a diverse audience, this type of sharing encourages progress in comparable areas. There is wisdom to be gained from hearing how others have increased participation in their offerings, or seen a rise in patient satisfaction, or helped to improve wellbeing for people with MND, their carers and families.
Yet, it is the conversations at each break and at lunch where the real sharing happens. Confidences given, future collaborations hinted at or entered immediately into the work plan, questions asked of speakers in follow up to a relevant presentation – even heated debates, but always with a sense of positivity. This is a crowd who want to make things happen. They’ve travelled a long way and want to return to their teams with news and actions.
There is always something for each attendee to take away and re-employ. This is global sharing, with camaraderie and understanding. It’s where knowledge takes centre stage. I would encourage more professionals to think about the impact they achieve. If it could make a difference further afield, and for those with or affected by ALS/MND, start writing your abstract now.
The APF needs you.
Care Information Manager
MND Association, UK