Neuromuscular Committee Study Day

Anna Mayhew-Consultant Physiotherapist from Newcastle opened the day explaining why Raising Standards of Care in Neuromuscular Disease is really important citing:

• Low prevalence of the disorders necessitating expert advice on management being collated on a multinational level
• That families should be offered the most informed treatment and counselling regardless of where they live 

• That a joint basis for diagnosis and care is a pre-requisite for well performed multinational clinical trials 


She then went onto explore how as physiotherapists we can work to achieve this in terms of accurate patient assessment and developing a clear understanding of disease management from early diagnosis onwards

        Robert Muni –Lofra Research NMPT from Newcastle continued with updates on measuring and managing joint ROM and pacing exercise and activity which stimulated interactive discussion on the use of scooters, trampolines and aquatic therapy!

        Case studies by Sarah Brown NMPT from Glasgow really helped to illustrate the challenges but rewarding management of investing time in boys and families when fractures occur

        An update in medical management in Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA) Type I was provided by Anne-Marie Childs-Consultant Paediatric Neurologist. Covering the use of steroids and genetics of exon skipping in DMD and then the challenges of rolling out the new treatment –Nusinersen – for babies with SMA I.

         Implications for physiotherapy management of these babies was then presented by Hayley Ramjattan NMPT from Oxford with her recent experience of respiratory care, postural management and orthotics in these babies which gave real insight into the difficulties of finding appropriate specialist seating equipment and challenges and successes of management.

In the afternoon we moved from the lecture theatre to clinical suites to facilitate practical workshops on contracture management with use of soft cast splints ably led by Marion Main, Consultant Physiotherapist from GOSH. We are very grateful to BSN Medical for the supply of the majority of the casting materials and their generous support of the event – I think good fun was had by all participants making multi-coloured casts

 

Lindsey Pallant NMPT Leeds facilitated another workshop on Knee –ankle –foot orthosis. Video was used to assist explanation of the assessment, casting and early rehab process. The testimony of a young man and his mum as to the benefits of using KAFOs in terms of sustained standing, independent aerobic activity and self esteem was, I think inspiring.

Feedback from delegates has been very positive with many commenting on the quality and usefulness of the presentations, case studies and interactive discussion that they generated. Physios enjoyed gaining practical skills in the workshops and especially appreciated the patient representatives. Many thanks again to all speakers and delegates and to APCP, Muscular-Dystrophy UK and BSN for for their administrative and practical support

Lindsay Pallant

Neuromuscular Committee Representative