As part of the diagnosis process, patients may have blood tests, including genetic tests when appropriate, neurophysiological testing (electrical testing of the nerves and muscles), muscle MRI (imaging) and a muscle biopsy (a piece of muscle taken and looked at via a microscope).
Patients will have regular assessments of their muscle function and strength by a physiotherapist, assessments of respiratory and cardiac function, diet and nutrition and bone health. In addition, the service provides advice and information regarding health and wellbeing, education and employment, equipment, housing adaptations and benefits e.g. Personal Independent Payment (PIP), care packages, personal assistants, etc. There are also facilities at RJAH for Orthotics, serial casting and gait analysis.
How to access the service
Referrals to the Neuromuscular Service can be made via a patient's GP, Hospital or Community doctor. Patients on the caseload can contact the Specialist Nurse and/or Neuromuscular Care Advisor directly for advice and support.
Clinics
Children & Adults
Clinics are held at Royal Jones and Agnes Hunt Orthopaedic Hospital in Children's Outpatient Department. These include:
- Neuromuscular Multi-Disciplinary Team (MDT) clinics
- Physiotherapy and Nurse-led clinics
- Symptom Control clinics
- Arthrogryposis clinic
- Joint orthopaedic clinics
- Mobile muscle clinics to review patients at home.
The team
Professor Tracey Willis
Paediatric Neurologist
Professor Tracey Willis is the lead consultant neurologist; her speciality research interests include DMD, FSHD, SMA and MRI in Neuromuscular Conditions and Congenital Myasthenic Syndrome. She was involved in designing and setting up the Global FKRP registry for limb girdle muscular dystrophy 2I, congenital muscular dystrophy and other FKRP related disorders. She is chair of the West Midlands Neuromuscular Network and Chair of the National Muscle Interest Group. She is the regional representative for the national SMA MDT and part of the FSHD and DMD working groups. She is a visiting professor for Chester University.
Dr Richa Kulshrestha
Consultant in Paediatric Neurodisability
Richa Kulshrestha is a Consultant Paediatric Neurodisability at The Robert Jones and Agnes Hunt Orthopaedic Hospital. Dr Kulshrestha specialises in Paediatric Development (Neurology) and her research interests are inherited neuromuscular disorders, paediatric epilepsy, neurology and spinal cord injury.
Dr Christopher Hine
Paediatric Respiratory Consultant
Dr Hine is a specialist paediatric respiratory doctor who assesses, monitors and treats patients with a range of neuromuscular and associated respiratory conditions. He is interested in medical education and research and has led independent studies on non-invasive testing of lung disease as well as supporting large, international trials across a range of respiratory issues.
Dr Mark Roberts
Consultant Neurologist (Adult)
Dr Mark Roberts is based at Salford Royal Hospital, Manchester. He attends monthly Adult Muscle Clinics.
Dr Yvette Easthope-Mowatt
Specialist Clinical Psychologist
Physiotherapists
Nick Emery, Specialist Adult and Children Neuromuscular Physiotherapist
Jenny Moustoukas, Specialist Neuromuscular Physiotherapist
Kate Strachan, Senior Physiotherapist
Specialist Nurse & Care Advisor
Clare Bassie, Neuromuscular Clinical Nurse Specialist, Tel: 01691 404493
Kerry Jones, Nurse Care Advisor, Tel: 01691 404333
Research
James Jones, Advanced Nurse Practitioner, Duchenne Muscular Dystrophy (DMD) HUB
Amy Wyatt, Neuromuscular Research Physiotherapist, Duchenne Muscular Dystrophy (DMD) HUB
Administration
Nicola Jones, Secretary to Prof. Willis Tel: 01691 404047
Debbie Davies, Secretary to Dr Kulshrestha Tel: 01691 404378
Leanne Crow, Secretary to Dr Hine Tel: 01691 404693
Elise Powell, Pathway Co-ordinator Tel: 01691 404375
Jill Lamb, Booking Clerk Tel: 01691 404486
Cathy Beckett, Booking Clerk Tel: 01691 404693
Associated Specialists at RJAH
Mr Nigel Kiely, Consultant Adult & Paediatric Surgeon
Mr Simon Hill, Consultant Orthopaedic Surgeon
Mr Jayesh Trivedi & Mr Neil Davidson, Consultant Spinal Surgeons
Mr Tony Twist, Dietician
Other Consultants working with the Team:
- Dr Adrian Morley-Davies, Consultant Cardiologist (Adult) based in University Hospital North Midlands. Attends Combined Clinics four times a year at RJAH
- Dr Suman Kundu, Consultant Cardiologist (Adult) based in Princess Royal Hospital, Telford. Attends Combined Clinics four times a year at RJAH
- Dr Ashish Chickermane, Consultant Paediatric Cardiologist, based at Birmingham Children’s Hospital. Attends Combined Clinics four times a year at RJAH
- Dr Ajit Thomas, Adult Respiratory Consultant based in University Hospital North Midlands
- Dr Martin Samuels, Consultant Paediatric Respiratory Physician based in University Hospital North Midlands
- Dr Julie Vogt, Consultant Clinical Geneticist based at based at Birmingham Women’s & Children’s Hospital.
- Professor Derek Willis, Consultant in Adult Palliative Care based at Severn Hospice, Shropshire.