APCP London Region Neuromuscular Webinar Series

This series of evening webinars kicked off on Tuesday, 10th November 2020 with a presentation from Jose Longatto looking at skeletal muscle channelopathies.  

Skeletal muscle channelopathies are a group of very rare neuromuscular disorders.  They affect approximately 1 in 100,000 people in the UK.  They cause muscle weakness or paralysis or a delay in relaxing muscles (myotonia) that often feels like cramp or the muscle becoming stuck.  As these are very rare conditions most healthcare professionals may only see 1 or 2 people with them during their career.  Jose works as part of a multi-disciplinary specialist clinic at GOSH that has been created to provide a central service that has experience and expertise in diagnosing and managing these conditions in children.  The clinic is directly funded by NHS England to promote equality in health care for rare diseases and accepts referrals from across the UK.

Jose gave a very interesting presentation covering presentation and symptoms of the main groups of channelopathies together with an overview of triggers, treatment options and physiotherapy treatment and management.

The webinar attracted approximately 150 delegates who commended the webinar for raising awareness of these rare conditions and the Channelopathies clinic at GOSH.  Full delegate feedback can be viewed HERE.

The second webinar in this series was presented Lisa Edel on Monday, 14th December 2020.

Lisa is a Specialist Respiratory Neuromuscular Physiotherapist at Great Ormond Street Hospital.  She gave a very interesting presentation on the respiratory management of children and young people with Spinal Muscular Atrophy Type I.

Lisa's presentation included an overview of  respiratory difficulties experienced by children with SMA Type I together with a comprehensive look at respiratory interventions available for these children.  The webinar provided a informative overview for members with less respiratory experience, as well as an opportunity for those with more respiratory involvement to learn from Lisa's clinical experience and knowledge.  

This webinar also attracted approximately 150 delegates.  The full delegate feedback can be viewed HERE.

The New Year has kicked off with the first of a 2-part webinar presented by Marion Main looking at the Management of Children with Spinal Muscular Atrophy (SMA) Type I in the Community. 

Marion has worked with children and young people with neuromuscular disorders for over 30 years and is the lead physiotherapist for the Neuromuscular Team at GOSH.

Marion introduced the session with an overview of the new drug therapies that have radically changed the outcomes for this group of children and described how this has resulted in a significant growth in the number of children living with SMA Type I.  She went on to explain the challenges that this presents for managing this cohort and and finished the session with consideration of the assessments and outcome measures that may be used.

This webinar really highlighted the fact that changing drug therapies together with improved management is resulting in a growing population of infants and children with SMA Type I who have severe and complex needs and that this poses challenges not just medically and therapeutically but also in terms of housing, mobility and transport, communication, socialisation, schooling and, in the long term, independence.

This webinar attracted approximately 190 attendees.  The full delegate feedback can be viewed HERE.

Part II of the Managing Children with SMA Type I in Community webinar took place on Wednesday, 20th January 2020.  During this webinar, Marion discussed treatment, orthotics and equipment.

The webinar again attracted approximately 190 attendees.  The full delegate report can be viewed HERE.