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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 Drawing on emerging evidence, evolving clinical practice and areas of unmet need, draft guidance covering the assessment, management and treatment of respiratory complications has been developed spanning the paediatric-to-adult continuum.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 comprises:

  • Dr. James Lilleker (Chair), Consultant Neurologist, Manchester Centre for Clinical Neurosciences at Salford Royal NHS Foundation Trust, Manchester, UK.

Paediatric sub-group

  • Dr. Claire Wood (lead), NIHR Senior Clinical Lecturer and Honorary Consultant in paediatric endocrinology, Newcastle University.
  • Dr. Steph Borg, Paediatric Consultant in metabolic bone disease, Sheffield’s Children’s NHS Foundation Trust, Sheffield.
  • Dr. Alexander Chesover, Consultant in paediatric endocrinology and metabolic bone disorders, GOSH and the Royal National Orthopaedic Hospital, London.
  • Dr. Nicola Crabtree, Consultant Clinical Scientist, Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham.
  • Dr. Christian de Goede, Consultant Paediatric Neurologist, Lancaster Teaching Hospitals NHS Foundation Trust, Preston.
  • Dr. Lydia Forestier-Zhang, MD Student, School of Medicine and Population Health,  University of Sheffield, Sheffield.
  • Dr. Jarod Wong, Consultant Paediatric Endocrinologist, University of Glasgow, UK.

Adult sub-group

  • Professor Emma Duncan (lead),  Professor of Clinical Endocrinology, King’s College London and Honorary Consultant Physician at Guy’s and St Thomas’ NHS Foundation Trust, London.
  • Dr Judith Bubbear, Consultant in Metabolic Bone Diseases, Royal National Orthopaedic Hospital, London.
  • Professor Emma Clark, Professor of Clinical Musculoskeletal Epidemiology & Deputy Head of Bristol Medical School & Head of
    Bristol Medical School (THS), Bristol.
  • Dr. Nicola Crabtree, Consultant Clinical Scientist, Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham.
  • Dr. Channa Hewamadduma ,Consultant Neurologist, Sheffield Teaching Hospitals Foundation Trust, Sheffield.
  • Dr. James Lilleker, Consultant Neurologist, Manchester Centre for Clinical Neurosciences at Salford Royal NHS Foundation Trust, Manchester, UK.
  • Professor Peter Selby, Consultant Physician and Honorary Clinical Professor of Metabolic Bone Disease, University of Manchester NHS Foundation Trust.
  • Dr. Clare Thornton, Consultant Rheumatologist, University College London Hospitals NHS Foundation Trust, London.

Patient/ patient representatives

  • Ally Allen, mother of a teenage boy living with SMA.
  • Suzanne Glover, living with SMA.

This working group comprises:

  • Professor Giovanni Baranello (Chair), Consultant Paediatric Neurologist, Great Ormond Street Hospital NHS Foundation Trust, London, UK.
  • Ally Allen, patient perspective, mother of a teenage boy living with SMA, Midlands.
  • Caroline Batke, Clinical Lead for Orthotics, Alder Hey Children’s NHS Foundation Trust, Liverpool.
  • Claire Holdcroft, Community Support Practitioner, SMA UK, Midlands.
  • Dr. Iain Horrocks, Consultant Paediatric Neurologist, Royal Hospital for Children, Glasgow.
  • Michail Kokkinakis, Honorary Senior Clinical Lecturer, King’s College London and Consultant Orthopaedic Surgeon, Evelina London Children’s Hospital, Guy’s & St Thomas’ NHS Foundation Trust, London.
  • Dr. Claire`Murnaghan, Consultant Paediatric Orthopaedic Surgeon and Honorary Clinical Senior Lecturer, Royal Hospital for Children, NHS Greater Glasgow and Clyde, Glasgow.
  • Fabian Norman-Taylor, Consultant Paediatric Orthopaedic Surgeon, 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.
  • Lyndsey Pallant, Clinical Lead Physiotherapist at Leeds Teaching Hospitals NHS Trust, Leeds.
  • Rosanna Rabb, Paediatric Physiotherapist at Birmingham Children’s Hospital NHS Foundation Trust, Birmingham.
  • Jennie Sheehan, Clinical Specialist Paediatric Physiotherapist, Evelina London Children’s Hospital, Guy’s & St Thomas’ NHS Foundation Trust, London.
  • Dr. Maria Vanegas, Consultant Neurologist, Evelina London Children’s Hospital, Guy’s & St Thomas’ NHS Foundation Trust, London.

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:

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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