Oxford Muscle Service
Welcome to Oxford Muscle Service.
Having an appointment with the Oxford Muscle Service
Bringing your child for an appointment with the Oxford Muscle Service
Bringing your child for an appointment with the Oxford Muscle Service
About us
We are a team of professionals with expertise in neuromuscular disorders, providing holistic care for all patients and families affected by a neuromuscular disorder.
Your consultant or GP has referred you or your child to us for an assessment and ongoing care because they suspect signs of a neuromuscular disorder.
Overall care will be led by our team of Consultants. Our team also includes consultants in:
Neurology
Respiratory Medicine
Orthopaedics
Cardiology
as well as a Clinical Psychologist, Nurse Specialist, Physiotherapists and Family Care Advisors.
We support patients and families living with neuromuscular conditions in the surrounding counties of Oxfordshire, including but not exclusively:
Bedfordshire
Buckinghamshire
Berkshire
Northamptonshire
Wiltshire.
As a tertiary care centre, we also aim to provide specialist support to local medical and therapy teams caring for Neuromuscular patients.
In addition to a patient's medical needs, our one-stop, multi-professional follow-up clinics provide access to research studies and a team to support those patients and their families that are keen to know more about current clinical trials and new medications.
We are invested in training the next generation of Neuromuscular healthcare professionals. Please contact us for the opportunity of a student placement or work experience.
Neuromuscular disorders
Neuromuscular disorders are a broad range of conditions where the function of voluntary muscle and/or sensory nerve function is affected.
This is due to pathology in the peripheral nerves, neuromuscular junction or the muscle itself. Some conditions may have additional involvement in the brain.
Most of the neuromuscular disorders seen by this service are genetic and caused by defects in the DNA. These DNA changes affect the normal working of the neuromuscular system.
This results in lack of muscle stimulation, muscle wasting and weakness. The limbs, trunk, heart and respiratory muscles can be affected. If the sensory nerves are also involved, abnormalities in sensation can occur.
Our clinics
Adults
Neurosciences Outpatients, Level 3 West Wing, John Radcliffe Hospital
Paediatrics
Children's Outpatients, LG1 Oxford Children's Hospital, John Radcliffe Hospital
How to find the John Radcliffe Hospital
What to bring
A list of your/your child's current medication and any other correspondence you think could be relevant.
If you are attending Paediatrics Clinic and your child is under two years old, it would be useful to bring their personal child health record ('red book').
Any orthotics or respiratory equipment used regularly for therapists to review.
Appropriate clothing to allow assessment e.g. loose fitting shorts/leggings and T-shirt.
Your hoist sling if this is required for transfers.
Accessibility
Within Paediatric Outpatients there is an accessible toilet. We also have double wide plinths for ease of assessment and access to a hoist for transfers if this is needed. We have can weigh you in the hoist or on a weighing chair.
In Adult Neurosciences Outpatients there is an accessible toilet with a motorised toilet seat. There is also a higher chair in the waiting area for those who may find standing from a lower seat challenging. We have a hoist in clinic for transfers and can also weigh you in the hoist.
Your appointment
Doctors
You will see a Consultant (Paediatric / Adult Neurologist) with expertise in neuromuscular conditions but may also meet other members of the clinical team such as Resident Doctors.
Oxford University Hospitals is a teaching Trust, and a medical student or observers may join the clinic, but only if you give your consent.
Your assessment will involve a discussion and a physical examination.We may also take blood and urine samples.
Specialist Physiotherapists
Our Specialist Physiotherapists may assess you alongside the Doctor if appropriate, or in a separate room.
The assessment may involve:
a physical examination
observing how certain movements are performed, including rolling, sitting, standing, walking or running.
a respiratory test to record lung function
questions about mobility, splints, therapy, leisure / sports and issues related to home, school or work.
The Physiotherapist will offer advice or treatment suggestions and liaise with your local Physiotherapist (if you have one) and other teams involved in your care.
Family Care Advisor
A Family Care Advisor may be present during your clinic appointment, but if you would like more time or privacy, we can arrange a follow-up phone call or review at a later date.
The Family Care Advisor can discuss a range of non-clinical issues, including:
concerns you have following a diagnosis
how to access other health and social care services
talking to teachers/employers about your condition
what financial support may be available
where you can get further information or professional support.
Clinical Nurse Specialist
Our children's neuromuscular Clinical Nurse Specialist may be present during your clinic appointment, and may link directly with you outside of clinic, for example if there are specific activities they are working on with your child, and/or to provide advice and answer your queries.
The Clinical Nurse Specialist can support with a range of issues, including:
hydrocortisone management and sick day rules
continued monitoring of different medications
talking to community teams about your child's condition
transition between children's and adults' muscle services
supporting professionals in education / community services
follow-ups between clinic visits.
Respiratory Consultants
Some people with neuromuscular disorders can develop respiratory problems, especially if the weakness affects the breathing muscles and/or the ability to cough and swallow.
Development of a scoliosis (curve in the spine) can also impact respiratory function.
Respiratory review is important to monitor for early signs of nocturnal hypoventilation and initiate management as needed.
Occasionally further tests will be required, such as:
Sleep studies
These monitor breathing during sleep and involve a planned one-night stay in hospital (outside of neuromuscular clinic appointments). They can also be done at home.Lung function tests
These measure how well the lungs work, and involve blowing into a mouthpiece attached to a measurement device.
Consultant Cardiologist
Some neuromuscular conditions can affect the heart muscle. Regular reviews are completed to monitor cardiac function, with tests such as ECG and echocardiograms.
Paediatric Psychologist
Our Specialist Paediatric Psychologist is available to work with children and their families to help them to manage, and adjust to, their conditions.
They may see children and their families at Oxford Children's Hospital or offer telephone consultations. Some patients meet their Psychologist several times, others once or twice.
The Psychologist can also work with patients during transition from children's to adult neuromuscular clinics.
Our team
Contact us
Our administration support staff will be able to direct your query.
Richard Tarver
Paediatric Neuromuscular secretary
Tel: 01865 234188
Email: childneuromuscular@ouh.nhs.uk
Hayley Pill
Adult Neuromuscular secretary
Tel: 01865 226262
Email: hayley.pill@ouh.nhs.uk
