What is the South West Neuromuscular Operational Delivery

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Web:
www.swneuromuscularodn.nhs.uk
What is the South West
South West Neuromuscular Operational Delivery Network
Operational Delivery
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ODN No: PPI001-JK-7-2014 | Review date: Sept 2016
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A Guide for People Living with a
Neuromuscular Condition
What is the South West Neuromuscular Operational
Delivery Network (ODN)?
The Network offers a complete specialist clinical care and support
service for children and adults living with neuromuscular disease
or a muscular dystrophy throughout the South West.
What Geographical Area does the Network cover?
The SW Neuromuscular ODN staff can only see individuals who live in the
following areas:
We aim to provide Health and Social Care professionals with a world-class
level of knowledge, support and training in neuromuscular conditions. This
will ensure that patients receive the best possible care from NHS Services
across the South West, and are able to access the appropriate support closer
to home to better manage their condition. To achieve this, the Network has
developed a team of neuromuscular specialists consisting of:
Gloucestershire
Bristol
Wiltshire
Somerset
Devon
 Paediatric and Adult Consultant Neurologists with a specialist interest
in neuromuscular conditions
 Specialist Physiotherapists who can train local physiotherapy teams in
relation to neuromuscular conditions
 Neuromuscular Advisors who provide non-clinical support and advice
for affected children and adults, and their families
 Psychologists with specialist knowledge of the impact of
neuromuscular conditions.
What Conditions does the Network Cover?
The Network covers all types of:

Muscular Dystrophy 

Spinal Muscular
Atrophy

Neuropathy and
myopathy
 Myasthenia
Myotonic
Dystrophy

Inclusion Body
Myositis
A full list of conditions covered can be found on our website:
www.swneuromuscularodn.nhs.uk
What Conditions does the Network Not Cover?
The Network does NOT cover:

Multiple Sclerosis

Motor Neurone Disease

Parkinson’s Disease

Cerebral Palsy
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Cornwall
People who attend specialist
neuromuscular clinics out of
these areas can still access our
services.
Please note that people living in
Dorset are now covered by NHS
England (Wessex) and have
access to their Neuromuscular
Advisor and Physiotherapist
based in Poole and
Southampton.
IoS
What Clinical Services does the ODN provide?
We run weekly Specialist Neuromuscular clinics in:
Plymouth
Derriford Hospital, Plymouth NHS Trust
Bristol
Bristol Royal Children’s Hospital, University Hospitals Bristol NHS Foundation
Trust
Southmead Hospital, North Bristol NHS Trust
We also schedule additional Specialist Neuromuscular clinics in:

Taunton

Gloucester

Exeter

Truro

Torbay
Further details of these can be found on our website or by calling our
Network office on 0117 414 1185/ 1184
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Who’s Who in the Network?
Paediatric Neurologists
Adult Neurologists
Dr Arni Majumdar
Bristol Royal Children’s Hospital
Dr Andria Merrison
Southmead Hospital Bristol
Dr Kayal Vijayakumar
Bristol Royal Children’s Hospital
Dr Liz Househam
Derriford Hospital Plymouth
Paediatric Physiotherapists
Adult Physiotherapists
Bev Toms
Bristol Royal Children’s Hospital
Nicola Doran
Southmead Hospital Bristol
Claire Eddy
Royal Cornwall Hospital
Janet McCay
Peninsula Community Health
Claire Frimpong-Ansah
Plymouth Child Development Centre
Geraldine Lavellee
Exeter Community Hospital
Neuromuscular Advisors
Ages and Areas covered
Elaine Burrows
Southmead Hospital Bristol
Adults & children: Glos, BANES, Swindon &
Wilts. Adults: S Glos
Ann Morgan
Southmead Hospital Bristol
Adults & children: Bristol, N Somerset &
Somerset. Children: S Glos
Vacant Post 1
Derriford Hospital Plymouth
Adults & children: Devon
Vacant Post 2
Derriford Hospital Plymouth
Adults & children: Cornwall
Neuromuscular Specialist Clinical Psychologists - Adults
Vacant Post
Southmead Hospital Bristol
Dr Craig Newman
Derriford Hospital Plymouth
SW Neuromuscular ODN Co-ordinators
Sharon Standen
Southmead Hospital Bristol
Jane Kinney
Southmead Hospital Bristol
The Specialist Consultants are supported in clinics by a Specialist
Physiotherapist, Clinical Psychologist, and Neuromuscular Advisor.
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The Network team also aim to attend clinics jointly with other clinical
specialists, such as Cardiologists, Respiratory Physicians, Geneticists and
Orthopaedic Surgeons to support the provision of a seamless transfer of care
between services.
How can the Network help me?
In addition to the clinical support provided by specialist doctors,
Psychologists and Physiotherapists who have a greater
understanding of rare neuromuscular conditions, the Network
Neuromuscular Advisors are a key resource for patients and their families.
Each Neuromuscular Advisor has their own region of the South West,
supporting children and adults, and will work with you from the point you are
diagnosed, or become known to the Network. They can help support you
and your family to optimise your quality of life by ensuring you can access the
help and support services you need, when and where you need them. They
will attend the Specialist Neuromuscular clinics and will also be available to
discuss issues over the phone or to visit you in your home if necessary.
Neuromuscular Advisors deal with a wide range of non-clinical issues, for
example:
 Supporting you in accessing other health and social care services
 Working with schools, colleges and employers
 Working with other professionals to ensure appropriate equipment,
adaptations and care packages are arranged eg wheelchair services
 Assisting with benefit claims
 Being a point of contact in between hospital visits
 Providing appropriate support as required to manage your, or your
child’s, condition
 Helping you to find social and leisure activities
 Providing emotional support and, where necessary, supporting access to
psychology services
 Liaising with hospital staff and local health professionals
The Network and its team is designed as a resource for accessing information
about neuromuscular conditions, and we are continually developing
guidelines to ensure the care you get is consistent with other areas of the
country.
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We can also provide literature to support you in the self-management and
understanding of your, or a family member’s, condition and aim to bring
together people with rare neuromuscular conditions via our Patient and
Public events.
How can I access the Network Services?
Referrals to the Specialist Consultants and clinics must be made
by your General Practitioner or hospital doctor.
You will gain access to the Specialist Physiotherapist or
Psychologist during clinic visits and they will work with your local teams to
ensure appropriate support is provided in a more convenient location closer
to home.
PLEASE LET US KNOW IF YOU WOULD PREFER THIS LEAFLET
IN A DIFFERENT FORMAT
If you have a confirmed diagnosis of a neuromuscular condition covered by
our Network and you live in the South West, you can contact the Network
office directly to gain access to the Neuromuscular Advisor in your area for
additional support . Other professionals or family members, with your
knowledge and permission, can also do this on your behalf.
How can I find out more about the Network?
If you have a confirmed diagnosis of a neuromuscular condition
covered by the ODN and have been seen by a member of the
Network team, your details will be automatically registered with
us. Details are held on a secure Network Database, only
accessible to Network staff, and will be used for audit and statistical
purposes to help us improve services in the South West for people with
neuromuscular conditions.
As part of this registration, we provide a Mail Update service which provides
a regular newsletter and access to Patient and Public events. You can also
visit our website to find out the latest service developments across the
region and obtain the contact details for the Neuromuscular Advisors for
your area.
If you would like to update or change your details, please complete the
Registration Form on the back page of this leaflet and return to us at the
Network Office. If you have any questions, please do not hesitate to contact
us.
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