At the National Hospital for Neurology and Neurosurgery at Queen Square we see a wide variety of rare neurological disorders and not everyone referred to this clinic has Motor Neuron Disease.
The service has evolved over 30 years to provide a central referral point for all patients with Motor Neuron Disease. It forms part of the MRC Centre for Neuromuscular Diseases.
General enquiries
Service management
Jan Clarke and Emma Townsley
Address
Motor Neuron Diseases
National Hospital for Neurology and Neurosurgery
Box 125 Queen Square
London
WC1N 3BG
We provide a service for patients throughout Greater London and the home counties. In addition, we serve as a supra-regional, national and international referral centre.
We aim to see patients within four weeks of referral. The clinics are consultant-led. Patients who receive a diagnosis are followed up within four weeks by the nurse consultant. The MND Care Team consists of two clinical nurse specialists and an MND care centre co-ordinator. They provide information, advice and support to patients, their families and friends.
They are available Monday to Friday during normal working hours.
The MND Care Team coordinate care between the patient, the hospital and the community; liaising with medical teams, therapy services and social care agencies. This includes attendance at multiple community based multi-disicplinary team meetings.
The team includes physiotherapists, occupational therapists, speech and language therapists, dietetics, respiratory physiotherapist and palliative care colleagues who specialise in the field of Motor Neuron Diseases.
We aim to provide a relaxed, calm environment to facilitate good communication with patients and their carers. We ensure regular follow-up in consultant clinics and provide nurse led clinics for ongoing support and care. We are available to address queries or concerns regarding diagnosis, symptom management and care needs beyond the clinic room. The care co-ordinator and MND specialist nurses can be contacted Monday to Friday, 9am-5pm via telephone or email.
The following services are available:
- Multidisciplinary MND-specific, speech and language, swallowing and dietary assessment clinics.
- Multidisciplinary MND-specific, physiotherapy and occupational therapy assessment clinics.
- Advance care planning clinics for both patients and carers.
- Home sleep study service and non invasive ventilation support service.
- MND nurse specialist clinics - providing support and advice for the patient, their family and their carers, including practical and financial issues.
- Secretion management clinic including treatment with Botox
We are part of the MRC Centre for Neuromuscular Diseases and our team is actively involved with neuroscience research.
We benefit from the UK first complex neuromuscular disorders centre. Our clinic is supported by the Motor Neuron Disease Association (MNDa).
This clinic is linked to the National Register for Kennedy’s Disease (KD) and provides a central referral point for KD patients in the UK. Kennedy’s disease (also known as Spinal Bulbar Muscular Atrophy) is a rare disorder.
The Kennedy’s Disease clinic screens for a number of non-neurological conditions that may be associated with Kennedy’s Disease. The clinic is multidisciplinary, with access to a physiotherapist and wheelchair specialist.
- Motor Neuron Diseases
- Amyotrophic Lateral Sclerosis (ALS)
- Progressive Bulbar Palsy (PBP)
- Progressive Muscular Atrophy (PMA)
- Primary Lateral Sclerosis (PLS)
- Spinal muscular atrophy (SMA)
- Kennedy’s disease (or Spinal Bulbar Muscular Atrophy – SBMA) - Kennedy’s Disease Clinic
- Multi focal motor neuropathy with conduction block (MMN-CB)
