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For Healthcare Professionals

For Healthcare Professionals

Our working groups

SMA Care UK has established a series of working groups, each tasked with reviewing their area of the international standards of care, the literature, current practice in the UK and making clinical recommendations in consultation with the SMA Reach networks.

If you are interested in the work of these working groups, please contact Vanessa Christie-Brown, the project manager, at: Vanessa.Christie-Brown@newcastle.ac.uk

A multidisciplinary team of those living with SMA, expert healthcare professionals, including respiratory, neuromuscular and intensive care clinicians, specialist physiotherapists and specialist nurses undertook a comprehensive review of the current recommendations for respiratory care in people with SMA. Drawing on emerging evidence, evolving clinical practice and areas of unmet need, draft guidance covering the assessment, management and treatment of respiratory complications has been developed spanning the paediatric-to-adult continuum. The group is working with the British Thoracic society and wider SMA REACH clinical networks so that guidance can be endorsed and published once consensus is achieved.

The respiratory working group comprises:

  • Dr. Anne-Marie Childs (Chair), Paediatric Neurology Consultant, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  • Jennifer Carter, Specialist Respiratory Physiotherapist, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  • Dr. Elaine Chan, Paediatric Respiratory Consultant, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
  • Lisa Edel, Senior Specialist Respiratory Neuromuscular Physiotherapist, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
  • Dr. Christopher Edwards, Paediatric Respiratory Medicine Consultant, Leeds Teaching Hospitals NHS Trust, Leeds, UK#
  • Dr. Marjorie Illingworth, Paediatric Neurology Consultant, University Hospital Southampton NHS Foundation Trust, Southampton, UK.
  • Dr. Ben Messer, Consultant in long-term ventilation and Intensive care Medicine, The Royal Victoria Infirmary, Newcastle upon Tyne, UK.
  • Dr. Patrick Murphy, Consultant respiratory physician, Guy’s and St Thomas’ NHS Foundation Trust, London, UK
  • Tracey Procter, Neuromuscular Nurse for Complex Care, Staffordshire Children’s Hospital, Stoke-on-Trent, UK
  • Dr. Martin Samuels, Consultant Respiratory Paediatrician, Staffordshire Children’s Hospital, Stoke-on-Trent and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
  • Portia Thorman (patient representative), SMA UK.

A multidisciplinary team of expert healthcare professionals, including physiotherapists, neurologists, spinal surgeons and an orthotist undertook a comprehensive review of the current recommendations for spinal care in people with SMA.

Drawing on emerging evidence, evolving clinical practice and areas of unmet need, they identified areas requiring revision alongside with evidence gaps. This process led to the development of 31 statements covering the assessment, management and treatment of spinal complications in people with SMA, stratified according to functional status and spanning the paediatric-to-adult continuum.

The lived experience of people with SMA was sought prior to running a Delphi study to build consensus within the SMA REACH network. Endorsement of the resulting guidance will be sought from key stakeholders.

The Spine Working Group comprises:

  • Dr. Robert Muni-Lofra (Chair), Consultant Physiotherapist, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle-upon-Tyne, UK.
  • Lianne Abbott, Highly Specialised Neuromuscular Physiotherapist, The Dubowitz Neuromuscular Centre, Great Ormond Street Hospital NHS, London, UK
  • Ally Allen, Support Grant Officer at SMA UK and patient representative with a teenage son living with SMA.
  • Mr. Andrew Bowey, Consultant Orthopaedic Surgeon, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle-upon-Tyne, UK.
  • Sheryl Chatfield, Clinical Specialist Neuromuscular Physiotherapist, St. George’s University Hospitals NHS Foundation Trust, London, UK.
  • Nicholas Emery, Neuromuscular Clinical Specialist Physiotherapist, The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry, UK.
  • Molly Everitt, law student at Liverpool University and patient representative living with SMA, Liverpool, UK.
  • Sarah Gregson, Highly Specialist Paediatric Physiotherapist, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK.
  • Steven Hewitt, Scoliosis Clinical Specialist Orthotist, Sheffield Children’s NHS Foundation Trust
  • Emma Manchester, NMD Adult Physiotherapist, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK.
  • Sunitha Narayan, Neuromuscular Coordinator and Specialist Physiotherapist, University Hospital Southampton NHS trust, Southampton, UK.
  • Katie Nevin, Neuromuscular Clinical Specialist Physiotherapist, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
  • Dr. Emer O’Reilly, Clinical Research Physiotherapist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Mr. Simon Roberts, Consultant Orthopaedic Surgeon, Scottish National Spine Deformity Centre, Royal Hospital for Children and Young People, Edinburgh, UK.
  • Dr. Mariacristina Scoto, Consultant Paediatric Neurologist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Jennie Sheehan, Clinical Specialist Paediatric Physiotherapist, Guy’s and St. Thomas’ NHS Foundation Trust, London, UK.
  • Portia Thorman, Head of Advocacy at SMA UK, patient representative and mother to a young boy living with SMA.
  • Mr. Athanasios Tsirikos, Consultant Orthopaedic Surgeon, Scottish National Spine Deformity Centre, Royal Hospital for Children and Young People, Edinburgh, UK.

Our Transition Working Group comprises:

  • Professor Chiara Marini-Bettolo (Chair), Consultant Neurologist, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle-upon-Tyne, UK.
  • Becci Howell,  Community Support Practitioner at SMA UK and patient representative with a brother who lives with SMA, Newport, Wales, UK.
  • Emma Manchester, NMD Adult Physiotherapist, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK.
  • Olivia Martineau, Neuromuscular Physiotherapist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Michelle Phillips, Head of Support at SMA UK and patient representative, Shipston-on-Stour, UK.
  • Dr. Tara Reeves, Consultant Paediatrician, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle-upon-Tyne, UK
  • Andy Rose, Physiotherapist & Specialist Neuromuscular Care Advisor, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
  • Victoria Selby, Neuromuscular Physiotherapist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Natalie Smith, Neuromuscular Clinical Nurse Specialist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Denise Wooding, Specialist Occupational Therapist, Alder Hey Children’s Hospital, Liverpool, UK.

This working group is currently being formed. It so far comprises:

  • Dr. James Lilleker (Chair), Consultant Neurologist, Manchester Centre for Clinical Neurosciences at Salford Royal NHS Foundation Trust, Manchester, UK.
  • Dr. Jarod Wong, Consultant Paediatric Endocrinologist, University of Glasgow, UK.

This working group is currently being formed. It so far comprises:

  • Professor Giovanni Baranello (Chair), Consultant Paediatric Neurologist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Dr. Emer O’Reilly, Clinical Research Physiotherapist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.

Our presentations and publications

Please see here for information on conferences we are attending, or have attended to promote SMA Care UK.

 

 

Find us at the following events:

  • Paediatric SMA Reach Annual Meeting – October 2024
  • Adult SMA Reach Annual Meeting – December 2024
  • British Paediatric Neurology Society Annual Conference – Oxford University, January 2025
  • Association of British Neurologists Annual Conference – ACC, Liverpool, May 2025

Adults’ Perspectives Report

In early 2025, SMA UK organised two workshops in Manchester and London, bringing together adults with SMA and specialist clinicians. These sessions aimed to delve into the unique needs and challenges faced by adults with SMA, particularly in clinical care.

Key findings highlighted the necessity for care standards that address the distinct requirements of adults, emphasising a holistic approach that supports independent living. The insights from these workshops are instrumental in guiding the development of updated Standards of Care under SMA Care UK.  You can read the report here.

If you are a healthcare professional and would like to receive updates about the SMA Care UK project please fill out this form:

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