Motor Neuron Diseases 

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.

We provide a service for patients throughout Greater London and the Home Counties as well as serving as a supra-regional, national and international referral centre.

We recognise that our role must extend beyond diagnosis and that we should also serve as a bridge between hospital and community in liaising with and often coordinating care between multiple medical, therapy and social agencies. We aim to see patients within four weeks of referral and we offer weekly, specialised consultant led clinics. 

The clinical nurse specialist and the Motor Neuron Disease (MND) care centre coordinator play key roles in providing information, advice and support to patients, their families and friends and to assist in the coordination of services.

We also have dedicated physiotherapists, occupational therapists, speech and language therapists, dietetics, and palliative care colleagues who are highly experienced in the field of Motor Neuron Diseases. We benefit from the the UK first complex neuromuscular disorders centre 

Our clinic is supported by the Motor Neuron Disease Association (MNDA) and the essence of our service is to provide a relaxed and calm environment to enable prolonged, careful and frank discussion. We ensure frequent follow-up and aim to maintain a constant availability to discuss any issues around diagnosis and symptom management outside the clinic environment by access to  the team by telephone or e-mail. As part of our service we offer the following support services:

  1. Multi-disciplinary MND-specific, speech and language, swallowing and dietary assessment clinics.
  2. Multi-disciplinary MND-specific, physiotherapy and occupational therapy assessment clinics.
  3. Advance care planning clinics for both patients and carers.
  4. Home sleep study service and non invasive ventilation support service.
  5. MND nurse specialist clinics for help and advice for all issues affecting the patient, their family and their carers, including practical and financial issues.

We are part of the MRC Centre for Neuromuscular Diseases and our team is actively involved in cutting-edge neuroscience research.

Kennedy’s Disease Clinic

This clinic is linked to the National Register for Kennedy’s Disease and is aimed at providing a central referring point for all patients in the UK. Kennedy’s disease (also known as Spinal Bulbar Muscular Atrophy) is a rare disorder and the Clinic will offer the multi-disciplinary approach available for MND and also provide screening for a number of non-neurological conditions that may associate with Kennedy’s Disease.

Coordinator for this clinic is Jan Clarke (jan.clarke@uclh.nhs.uk - Telephone: 020 3448 3517); general enquiries Marcia Forde (Marcia.forde@uclh.nhs.uk -  Telephone: 020 3448 8251 - Fax: 020 3448 3633).

 

Conditions treated

  • 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)

Patient support services

All conditions are supported by a clinical nurse specialist, and patients and relatives are able to access complementary therapies during their outpatient appointment or inpatient stay with us.

 

Dr Katie Sidle
Consultant

Dr Nikhil Sharma
Consultant

Dr Pietro Fratta
Consultant

Dr Richard Orrell
Consultant

Dr Robin Howard
Consultant

Dr Katie Sidle Motor Neuron Diseases, Neurology and neurosurgery
Dr Nikhil Sharma Motor Neuron Diseases, Neurology and neurosurgery
Dr Pietro Fratta Motor Neuron Diseases, Neurology and neurosurgery
Dr Richard Orrell Motor Neuron Diseases, Neurology and neurosurgery
Dr Robin Howard Motor Neuron Diseases, Neurology and neurosurgery

 Contact details

Motor Neuron Diseases
National Hospital for Neurology and Neurosurgery
Box 125 Queen Square
London. WC1N 3BG

General enquiries
Telephone: 020 3448 3899
Fax: 020 3448 3111

Service manager - Jan Clarke / Emma Townsley
Telephone: 020 3448 3517
Email: jan.clarke@uclh.nhs.uk

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