The Centre for Neuromuscular Diseases draws together the expertise of a large team of specialist clinical neurologists, neurophysiologists, neuropathologists, neurophysiotherapists and specialist nurses in the clinical management of neuromuscular muscle wasting diseases such as motor neuron disease, myasthenia gravis, muscular dystrophy and peripheral neuropathy. In addition there is an active clinical and preclinical research programme into these disorders. As such, it is one of the leading centres for research into neuromuscular diseases in the UK.
We see around 3,500 patients each year in the muscle, peripheral nerve, motor neurone disease and myasthenia clinics. The muscle and peripheral nerve services have both experienced a rapid expansion in recent years, driven by demand for treatment. We are also actively involved in research into the genetic and acquired neuromuscular diseases, are involved in clinical trials of new treatments and offer specialist clinics for genetic neuromuscular diseases.
We have recently been awarded a grant to set up the MRC Centre for Neuromuscular Diseases at UCL and the National Hospital, in conjunction with the University of Newcastle and Great Ormond Street Hospital. The Centre, the first of its kind in the UK, promotes translational research in neuromuscular disease - a bench to bedside approach that is intended to facilitate the rapid transfer of research knowledge to the clinical environment.
The Neuromuscular Complex Care Centre (NMCCC) is led by Professor Ros Quinlivan, Consultant in Neuromuscular Diseases, at the National Hospital for Neurology and Neurosurgery. It was established in 2014, following a successful business case led by Professors Ros Quinlivan and Mike Hanna. It has previously been a runner up for an HSJ ward and was nominated for a Prime Minister Award. In 2020 the NMCCC won a UCLH excellence award for improving patient care.
The NMCCC is designed to provide co-ordinated multi-disciplinary assessment of people with a wide range of complex Neuromuscular disorders including, for example, Duchenne muscular dystrophy and myotonic dystrophy.
The NMCCC aims to co-ordinate all aspects of a patient’s care including: Neurology, Respiratory, Cardiac and Gastroenterology and therapy. All of our admissions are elective and aim to provide a full multi-disciplinary assessment over a short in-patient stay, the goal being to prevent illness though proactive anticipatory management.
Neurological care includes routine Neurology follow up, diagnostic investigations and treatment infusions. From January 2021, the NMCCC will be co-ordinating Spinraza treatment for people with Spinal Muscular Atrophy.
A full Respiratory support service is offered, covering surveillance of respiratory function, and initiation and management of Non Invasive Ventilation (NIV) treatment. Cardiac investigations (ECG, 24 hour ECG, ECHO) and clinical assessment are provided by a consultant cardiologist. Nutritional assessment and support and management of bowel issues are provided by the gastroenterology and dietetic team. Psychological support is also available.
NMCCC multi-disciplinary team:
Consultant Neurologists: Prof Ros Quinlivan, Prof Hanna, Dr Aisling Carr, Dr Matt Parton, Dr Chris Turner, Dr Jasper Morrow, Dr Hadi Manji, Dr Dipa Jayaseelan
Associate Clinical Specialist: Dr Mahalekshmi Desikan, plus two clinical fellows and a clinical nurse Specialist
Consultant Respiratory Physicians: Dr Ronan Astin, Dr Fionnuala Crummy, Dr Swapna Mandal
Consultant Cardiologist: Dr Kostas Savvatis
Consultant Gastroenterologist: Professor Anton Emmanuel
Therapy staff:
- Specialist Respiratory physiotherapist
- Senior Speech and Language therapist
- Respiratory Physiologist
- Clinical Psychologist
- Rehabilitation Physiotherapist
- Dietitian
- Occupational Therapist
Ward Manager: Sr Mayumi Rossi
Admission Co-ordinators: Ms Sonia Da Mota Gomes, Mr Mitchell Duberry
Service management
Jackie Kasozi-Batende
Address
Neuromuscular disease
National Hospital for Neurology and Neurosurgery
Queen Square
Box 102
London, WC1N 3BG
Referral
Other referral information
NHS e-Referral Service (formerly Choose and Book referrals)
Referral address
Neuromuscular disease
National Hospital for Neurology and Neurosurgery
Queen Square
Box 102
London, WC1N 3BG
- muscle channelopathies
- brain channelopathies
- mitochondrial disease
- dystrophies e.g LGMD, FSHD, myotonic, distal muscle dystrophy, Duchenne's muscular dystrophy, Becker's muscular dystrophy
- myopathies
- Inflammatory muscle diseases e.g polymyositis, dermatomyositis, IBM inflammatory and non inflammatory
- NMJ diseases e.g myasthenia gravis, neuromyotonia, cramp fasciculation syndrome, fibromyalgia
- droped head syndrome
- Demyelination Peripheral neuropathy
- Carbohydrate dietary advice for patients with HPP
- Energy conservation for patients with Mitochondrial Disease
- Exercise advice for people with Mitochondrial Disease
- Highly Specialised Service For McArdle Disease and Related Disorders
- Managing Fatigue after Subarachnoid Haemorrhage
- Motor Neurone Disease
- Muscle Biopsy
- Nerve Biopsy
- Neuromuscular Complex Care Centre
- Why it is important to get your heart checked? Information for patients with mitochondrial disease
- Young person's neuromuscular clinic
Consultants
