Neuromyelitis optica

Service detail

The NMOSD service

It is essential for people with NMOSD to be treated early in their condition to prevent relapses and disability. Referrals received from consultant neurologists will be accepted, referrals direct from GPs will be accepted if it is likely the patient has NMOSD or if the patient has AQP4 or MOG antibodies

The aims of this NMOSD service are:

• To ensure early correct diagnosis and treatment of adults and children with NMOSD
• Education and support of persons affected by NMOSD
• Be a source of information and education to health care professionals

We provide:

• Expert input on diagnosis, assessment and treatments
• Acute admissions for relapse assessment and management
• Remote advice to local medical teams
• Patient telephone and email advice line, manned by the NMOSD Nurse Specialists
• Access at clinic appointments to a full medical and therapy team 

Written information and access to websites on NMOSD

NHS England has acknowledged NMOSD as a rare neurological condition that requires specialist expertise and funds The Walton Centre NHS Foundation Trust in Liverpool and John Radcliffe Hospital at Oxford to provide the service.

 The Walton Centre, Liverpool:

• wcft.nmo.advice@nhs.net
• Tel: 0151 556 4008
• Fax: 0151 529 2027
• Nurse specialists: 0151 556 4008
• NMOSD co-ordinator: 0151 556 4149

The Walton Centre NMOSD team

• Consultant Neurologist – Dr Saif Huda
• Consultant Neurologist - Dr Shahd Hamid
• Consultant Paediatric Neurologist - Dr Rachel Kneen
• NMOSD Clinical Fellows: Emily Gibbons and Mirasol Forcadela
• NMOSD Neurology registrar on an observership - Chiara Rocchi
• NMOSD Nurse Specialists: Sam Linaker and Tricia Kelly
• Orthoptist: Francesca Lynch
• NMO Counsellor: Stephanie Edwards
• NMOSD Co-ordinator: Diane Pickering
• Secretaries: Annette Topping and Elizabeth Gibb
• Occupational Therapist
• Physiotherapist
• Dietitian

John Radcliffe Hospital team, Oxford:

• nmo.advice@ouh.nhs.uk
• Tel: 01865 231900
• Nurse Specialists: 01865 231905
• NMO Coordinator: 01865 231900
• Fax: 01865 234837

 

• Prof. Jackie Palace – Consultant Neurologist
• Asso. Prof. M Isabel Leite – Consultant Neurologist
• Dr Sithara Ramdas Consultant Paediatric Neurologist
• Miss Sri Ramdas- Consultant Ophthalmologist (maternity leave)
• Mr Eleftherios Agorogiannis – Consultant Ophthalmologist
• Dr Anna Francis – Clinical Fellow
• Yvonne Sharawakanda – Specialist Nurse
• Madalina Miron – Specialist Nurse (maternity leave)
• Bindu Sathees Kumar – Specialist Nurse (maternity cover)
• Baerbel Christou – Physiotherapist
• Dr Liana Nagy – Occupational Therapist
• Dr Paddy Waters – Co-Director Oxford Autoimmune Neurology Diagnostic Laboratory
• Dr Mark Woodhall – Postdoctoral Research Assistant
• Miss Imogen Kendall – Laboratory Technician
• Mr Victor Mgbachi – Laboratory Manager / Research Assistant
• Alix Platt – Neurological Clinical Service Manager
• Lucy Thomas – Service Coordinator
• Scott Lambert – Database Analyst
• James Moore – Secretary

About the teams:

NMOSD Specialist Nurse

• Use us as a point of contact when you are worried or concerned about any new symptoms
• Information or advice regarding medication
• Support of for relapse concerns
• Advice and liaison with local neurology services regarding relapse management
• An assessment of your symptoms
• Referral to local therapists, continence adviser
• Information regarding NMOSD and medications to increase your understanding

Dietician

• Provide advice on nutrition and health
• For people with NMOSD, advice may be given for weight management (weight gain or loss) or for optimising nutritional status.

Orthoptist

Assessment and quantification of your level of vision
Relating this information to your visual needs and requirements
Transferring this information to team members
Bilateral visual loss will impact on
Mobility
Work
Hobbies
Social interaction

Physiotherapist

Discussion around any physical problems you have identified. Examples can include reduced balance, limb weakness, stiffness, spasms Identifying any physical issues that have not been addressed up to now
Information about any physiotherapy input in the past
Information about any previous discomfort of injury
Discussion around current levels of activity / exercise/ physical care programmes
Referral to local services for further input can be made
Referrals or provision of some aids such as walking sticks, hand supports, wheelchairs can be made

Occupational Therapist

Discussion about your everyday activities and roles
Questions about what you have stopped doing or never started
Questions about your home environment and support
Discussion about any previous OT input
Discussion about impact of symptoms
Analysing your lifestyle, activities and roles to identify areas of difficulty, and working with you to develop skills and learn ways in which activities can be successfully carried out
Adapting the activity itself, for example, by advising on specialist equipment to assist in carrying it out or learning a new technique.

NMOSD Counsellor

• Provides help and support to patients including:
  • Advice on coming to terms with diagnosis
• Advice on managing worries around long term illness and prognosis
• Referrals to local counselling servicing

The NMOSD service aims to deliver a comprehensive service for patients and includes:

• Diagnosis and management combining clinical, imaging and laboratory assessment
• Diagnostic services - testing (Aquaporin-4 and MOG antibodies)
• Relapse management
• Optimising medication regimes including rituximab
• Multidisciplinary team assessment
• Symptom management
• Lifestyle issues and health promotion
• Provides education, information, knowledge and a greater understanding of NMO
• Liaison and referral with local services
• Emotional support

You can get further information about diagnosis, symptoms, treatment and living with NMOSD on our patient leaflet, available here

Referral information

We welcome all referrals for:

• People with suspected NMOSD
• People diagnosed with NMOSD
• Uncertainty of diagnosis for people with recurrent atypical CNS inflammation
• Suspected non-MS CNS inflammation
• Differential diagnosis for MS
• Advice regarding management
• Queries on all aspects of treatment
• Multidisciplinary team evaluation