Motor Neurone Disease

We are involved in clinical trials of new treatments and offer specialist clinics.

Click here to view current clinical trials in the Department of Neuromuscular Diseases.

Diseases covered

The service covers all motor neurone diseases including:
 

  • Amyotrophic Lateral Sclerosis (ALS)
  • Progressive Bulbar Palsy (PBP)
  • Progressive Muscular Atrophy (PMA)
  • Primary Lateral Sclerosis (PLS)
  • Spinal Muscular Atrophy (SMA)
  • Kennedy’s Disease

We also care for patients with multi focal motor neuropathy with conduction block (MMN-CB).

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

Diagnosis and treatment

Our service is highly specialised and patients receive a full and expert review.
Treatment is aimed at reducing and managing symptoms.
We regularly audit our service to ensure that we meet with the exacting criteria provided in the MNDA ‘standards of care’ check list.

How to refer

NHS e-Referral Service

or

MND Care Centre UCLH
Box 125
NHNN
Queen Square 
London
WC1N 3BG

uclh.referrals.mnd.care@nhs.net
Tel: 020 7448 3517

Further information and support

For more information on our services, please contact our care centre coordinator:

Jan Clarke
Care Centre Coordinator
The National Hospital for Neurology & Neurosurgery
Box 125 Queen Square
London WC1N 3BG

Direct Line: 0203 448 3517
Switchboard: 0845 155 5000
Fax: 0203-448-3519
Email: jan.clarke1@nhs.net
Web: Motor Neuron Diseases : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)

Motor Neurone Disease Association

PO Box 246
Northampton NN1 2PR

Tel: 08457 626 262
Fax: 01604 624 726
Email: care@mndassociation.org
Web: www.mndassociation.org  

ALS Association (US) 

Web: www.alsa.org

The MND service at the National Hospital has evolved over 20 years to provide a central referral point for all patients with Motor Neurone Disease.

Our Clinical Team

Prof Andrea Malaspina  Consultant Neurologist & Clinical Academic Lead
Dr. Katie Sidle - Consultant Neurologist & Clinical Service Lead
Dr. Robin Howard - Consultant Neurologist
Prof . Pietro Fratta - Consultant Neurologist

Jan Clarke/Emma Townsley - Nurse Consultant
Michaela Waltho - Clinical Nurse Specialist
Harriett Bailey - Clinical Nurse Specialist

Damaris Hobi - MND Care Co-ordinator 

Justyna Reinert - MND Dietitian

Lynne Hills - MNDa Wheelchair Specialist

Dr Dalisha Dalisha - Research Fellow   

Rita Gameiro - Research Nurse
Raquel Lopes - Research Nurse
Roy Carganillo - Research Nurse

We also have dedicated physiotherapists, occupational therapists, speech and language therapists, dietetics, and palliative care physiotherapists who are highly experienced in the field of MND. 

We aim to see patients within four weeks of referral and we offer weekly, specialised MND consultant led clinics. 

Our clinic is supported by the Motor Neuron Disease Association (MNDA) and the main aim 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 by telephone or e-mail.

As part of our service we offer the following support services:

1. Speech and language, swallowing and dietary assessment clinics

2. 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. Nurse specialist clinics for help and advice for all issues affecting the patient, their family and their carers, including practical and financial issues.

We also work closely with local social services and the MNDA regional care advisors to provide a network of support and advice and practical management to assist both the patient and their family and carers.