Collaboration is essential when it comes to combating such an unpredictable disease as ALS. People with ALS / MND can have multiple functional problems and complex needs. These vary greatly depending on the onset, stage of progression and unique nature of each case. This discrepancy makes ALS particularly challenging to research and arduous to treat.
The National Institute for Health and Care Excellence (UK) guideline [NG42], suggests “coordinated care for people with MND, using a clinic‑based, specialist MND multidisciplinary team approach”. This is exactly the approach adopted by ALS Centre Moscow to improve the quality of care for ALS patients. The problem is, many of the disciplines suggested by researchers (Ng & Fary, 2012) simply do not exist in Russia of yet (also note the absence of music therapy in this diagram, despite the recent evidence for its effectiveness).
Good practice exchange is thus invaluable. In the past (in 2016, to be exact), specialists from ALS Centre Moscow visited MNDA Northampton Centre to learn about English MND practice (2016). Dr. Richard Sloan of MNDA West Dorset traveled and taught in Moscow in 2013 and 2017. In music therapy, collaboration with other specialists – neurologists, physical therapists, speech and language therapists, occupational therapists, social workers, psychologists, dietitians, to name a few – is essential for successful treatment planning and implementation. Ideally, music therapy never replaces these services, but rather enhances them, bringing new possibilities and increased motivation for the patients.
In preparation for my research project, I contacted Cambridge MND Care Centre, asking for an opportunity to meet the team and to consult with speech and language specialists about the available techniques to enhance bulbar functions of people with ALS and to reliably measure the changes. Victoria Edwards (happily, an SLT herself!) and Louise Boardman, the coordinators, were kind enough to invite me to the weekly clinic on September 21 2017.
Arthur Rank Hospice, where the Care Centre has recently moved, turned out to be serene, beautiful space, full of sunlight and gentle, pastel colours.
I was lucky to meet and to consult with Dr.Allen (who cited Voltaire and Sholokhov as we discussed peculiarities of ALS / MND care internationally) and other members of the team involved in outpatient reception. I was conscious (or shy?) about taking pictures whilst people were busy at work, so not everyone is in the photo, but I would like to acknowledge the advice and support I received from “speechie” (SLT) Siofra Mulkerrin, dietitian Artika Datta, physical therapist Carol (surname escapes me, alas), and researcher Alicia Wilcox.
My presentation on the upcoming music therapy for ALS research was met with appreciation and interest, for which I am grateful, and a brief discussion that followed instills in me hope for future connections and collaboration.