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SWNODN Virtual Advisor/FAQs

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What does a Neuromuscular Care Advisor do?

The Neuromuscular Care Advisors are part of a multi-disciplinary team who specialise in neuromuscular conditions.  There are four Advisors based across the South West.  You may meet them in one of the specialist clinics or be referred to them by your own GP or other healthcare professional.  You can also contact them during office hours throughout the week if you need advice.

How can I access the Neuromuscular Advisor service?

Patients must have a confirmed diagnosis of a neuromuscular condition covered by the network and live in the South West (excluding Dorset). 

If you are an individual with a neuromuscular condition you can contact your Neuromuscular Advisor if you have a specific enquiry or need help with a matter relating to your condition. Advisor’s work Monday to Friday during normal office hours. You can either call them directly if you have their number or call the Network Office.

What Services are available in my area?

We are working on putting together a number of Resource Packs which detail support available in each county of the South West of England. Please let us know of any services in your area that we have missed off and you think would be useful to other people.

  • Bath and North East Somerset
  • Bristol
  • Cornwall
  • Devon
  • Gloucestershire
  • North Somerset
  • South Gloucestershire
  • Swindon
  • Wiltshire

I'm a carer, what support is available for carers in my area?

If you are new to caring, you may be feeling overwhelmed and unsure where to start. There are many organisations across the South West that can help guide you through the maze of what support is out there. Or it could be that the person you care for is starting to need more care. As things change you may find you have new questions or just need someone to share your feelings with.

Many carers do not consider themselves to be a carer – they are just looking after someone in their family who needs help and getting on with what needs to be done. They often don’t know what support is available and struggle on alone.

Support organisations for carers may be able to help with the following:

  • Benefits and other financial matters affecting carers, including debt
  • Breaks from caring and other ways of looking after yourself
  • Juggling work and care
  • Where to start in getting help at home
  • Support for carers in hospitals and GP surgeries
  • Aids and adaptations
  • Transport and travel issues
  • Guidance with form filling
  • Managing other people’s affairs
  • Accessing training, volunteering or work
  • Provide Carers Emergency Cards
  • One to one support
  • Carers groups
  • Many also offer specialist support to young carers and young adult carers.

Please explore the websites below of national organisations who support carers:

 

SWNODN How to Access a Neuromuscular Clinic

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How to access a Neuromuscular Clinic

 

 

 

 

 

 

 

 

Patients can be referred to the neuromuscular clinics by their GP, Neurologists or Paediatrician via the normal referral route for the hospital that the clinic is held in.

If you are a patient who has had a confirmed diagnosis of a neuromuscular condition covered by the SWNODN, you may already be receiving care from a Consultant Paediatrician or Neurologist in your local hospital. 

Sometimes your local hospital doctor may seek specialist advice from, or refer you to, a SWNODN Consultant Neurologist. 

If you would like further information and advice about attending one of the SWNODN’s neuromuscular clinics, or would like to get in touch with the Neuromuscular Advisor for your area, please contact the Network office.

 

 

SWNODN - Wiltshire

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Unfortunately, we do not currently hold neuromuscular clinics in the Wiltshire area. However, you would be in the catchment area for the Bristol (BNSSG) clinics.

There may be other support and resources in the Wiltshire area that you can access. We suggest you go to Muscular Dystrophy UK's support page which includes a search function to help find services/support in your area. 

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Somerset

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Information on neuromuscular clinics are available to you in Somerset. If you are unsure about any of the information please contact the Network Coordinator.  For any specific information about neuromuscular clinic appointments, please contact the relevant hospital or speak to your Neuromuscular Advisor.

To find out about other support and resources in your area, you may find Muscular Dystrophy UK's Neuromuscular Support and Resources Hub helpful. This includes an interactive map in which you can select your location and service/support required. 

In our Virtual Advisor section we have also created some Resource Packs for each county which you may find helpful.

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

Paediatric Neuromuscular Clinics

The SWNODN consultants do not currently provide a paediatric neuromuscular clinic in Somerset.  The closest paediatric neuromuscular clinic for families in Somerset would be in Bristol.  Please click on the Bristol link to find out more. 

Transition Clinics

The SWNODN consultants do not currently provide a designated neuromuscular transition clinic in Somerset.  However, we do have close links with the local Paediatricians in Somerset who may attend Dr Merrison’s Adult Neuromuscular Clinic in Taunton on the afternoon of the second Monday of the month.  This can be discussed with your Paediatrician and Dr Merrison prior to attending the adult clinic. The aim of the joint appointment is to help with the smooth transfer of children and their families from paediatric to adult neurology services.

Adult Neuromuscular Clinics

Location:

Musgrove Park Hospital, Taunton

Who will you see:

Dr Stefen Brady, Consultant Neurologist
Nicola Grose (nee Doran), Neuromuscular Physiotherapist
Ann Morgan, Neuromuscular Advisor

Details:

Dr Brady holds a neuromuscular clinic on the 2nd Monday morning of every month.

Contact Details:

Enquiries about neuromuscular clinic appointments can be made via 01823 342139.

Useful information:

Joint Clinics

The SWNODN consultants do not currently provide any joint specialty clinics in Somerset.  The closest joint clinics for families in Somerset would be in Bristol.

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Gloucestershire

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Information on neuromuscular clinics are available to you in Gloucestershire. If you are unsure about any of the information, please contact the Network Coordinators.  For any specific information about neuromuscular clinic appointments, please contact the relevant hospital or speak to your Neuromuscular Advisor.

To find out about other support and resources in your area, you may find Muscular Dystrophy UK's Neuromuscular Support and Resources Hub helpful.  This includes an interactive map in which you can select your location and service/support required. 

In our Virtual Advisor section we have also created some Resource Packs for each county which you may find helpful.

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

Paediatric Neuromuscular Clinics


Location:

Gloucestershire Royal Hospital

Who will you see:

Dr Ewoud Vorstman, Consultant Paediatrician
Elaine Burrows, Neuromuscular Advisor
Vic Selby, Paediatric Neuromuscular Physiotherapist

Details:

Dr Vorstman has an interest in neuromuscular conditions and holds a paediatric neuromuscular clinic once every three months on a Thursday afternoon which is supported by the Network’s Neuromuscular Advisor and Paediatric Physiotherapist. 

Contact Details:

Enquiries about clinic appointments can be made via Dr Vorstman’s secretary on 0300 4225707.

Useful information:

Transition Clinics

Location:

Gloucestershire Royal Hospital

Who will you see:

Dr Ewoud Vorstman, Consultant Paediatrician
Dr Andria Merrison, Consultant Neurologist
Elaine Burrows, Neuromuscular Advisor
Local Paediatric Physiotherapist
Nicola Grose (nee Doran), Neuromuscular Physiotherapist

Details:

Dr Vorstman and Dr Oliver, Consultant Paediatricians will attend Dr Merrison’s Adult Neuromuscular Clinic in Gloucester on the fourth Monday of the month when they have a child who they feel is ready to go through the process of  transferring to adult services.  The aim of this clinic is to prepare children and their families for the transfer from paediatric to adult neurology services.

Contact Details:

Enquiries about clinic appointments can be made via Dr Vorstman’s secretary on 0300 4225707.

Useful information:

Adult Neuromuscular Clinics


Location:

Gloucestershire Royal Hospital

Who will you see:

Dr Andria Merrison, Consultant Neurologist
Elaine Burrows, Neuromuscular Advisor
Nicola Grose (nee Doran), Neuromuscular Physiotherapist

Details:

Dr Merrison holds a neuromuscular clinic on the fourth Monday afternoon of every month.

Contact Details:

Enquiries about clinic appointments can be made via 0300 4226758 or Out Patient Appointments on 0300 4226877.

Useful information:

 

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Devon

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Information on neuromuscular clinics are available to you in Devon. If you are unsure about any of the information, please contact the Network Coordinators. For any specific information about appointments, please contact the relevant hospital or speak to your Neuromuscular Advisor.

To find out about other support and resources in your area, you may find Muscular Dystrophy UK's Neuromuscular Support and Resources Hub helpful.  This includes an interactive map in which you can select your location and service/support required. 

In our Virtual Advisor section we have also created some Resource Packs for each county which you may find helpful.

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

Paediatric Neuromuscular Clinics

Location:Vranch House School, Exeter
Who will you see:Dr Kayal Vijayakumar, Consultant Paediatric Neurologist
Dr Richard Tomlinson, Consultant Paediatrician
Clare Stayt, Neuromuscular Advisor
Kate Moss, Paediatric Physiotherapist
Details:Dr Vijayakumar and Dr Tomlinson hold a paediatric neuromuscular clinic twice a year.
Contact Details:Enquiries about clinic appointments can be made via Dr Tomlinson’s secretary on 0139 240 3159.
Useful information: 

 

Location:Torbay Hospital
Who will you see:Dr Kayal Vijayakumar, Consultant Paediatric Neurologist
Dr Iolanda Guarino, Consultant Paediatrician
Clare Stayt, Neuromuscular Advisor
Jill Dommett, Paediatric Physiotherapist
Details:Dr Vijayakumar and Dr Guarino hold a paediatric neuromuscular clinic twice a year.
Contact Details:Enquiries about clinic appointments can be made via Dr Guarino’s secretary on 0180 365 5812.
Useful information:

 

Location:Plymouth Child Development Centre
Who will you see:Dr Anirban Majumdar, Consultant Paediatric Neurologist
Dr Sharon Glass, Consultant Paediatrician
Dr Denise Ullmann, Consultant Respiratory Paediatrician
Clare Stayt, Neuromuscular Advisor
Clare Frimpong-Ansah, Paediatric Neuromuscular Physiotherapist
Details:Dr Majumdar and Dr Glass hold a paediatric neuromuscular clinic once a year.
Contact Details:Enquiries about clinic appointments can be made via Dr Glass’s secretary on 01752 439430
Useful information:

Transition Clinics

Location:Plymouth Child Development Centre
Who will you see:Dr Anirban Majumdar, Consultant Paediatric Neurologist
A Consultant Neurologist (adult service)
Clare Stayt, Neuromuscular Advisor
Claire Frimpong-Ansah, Paediatric Neuromuscular Physiotherapist
To be appointed, Specialist Neuromuscular Physiotherapist
 
Details:Dr Majumdar holds this clinic once a year.  It is aimed at preparing children and their families for the transfer from paediatric to adult neurology services.
Contact Details:Enquiries about clinic appointments can be made via Dr Glass’ secretary on 0175 243 9430.
Useful information:

 

Location:Vranch House School, Exeter
Who will you see:Dr Kayal Vijayakumar, Consultant Paediatric Neurologist
A Consultant Neurologist (adult service)
Clare Stayt, Neuromuscular Advisor
Claire Frimpong-Ansah, Paediatric Neuromuscular Physiotherapist
To be appointed, Specialist Neuromuscular Physiotherapist
Details:Dr Vijayakumar holds this clinic once a year.  It is aimed at preparing children and their families for the transfer from paediatric to adult neurology services.
Contact Details:Enquiries about clinic appointments can be made via Dr Tomlinson’s secretary on 01392 403159.
Useful information: 

 

Location:Torbay Hospital
Who will you see:Dr Kayal Vijayakumar, Consultant Paediatric Neurologist
Dr Iolanda Guarino, Consultant Paediatrician
A Consultant Neurologist (adult service)
Clare Stayt, Neuromuscular Advisor
Jill Dommett, Paediatric Physiotherapist
To be appointed, Specialist Neuromuscular Physiotherapist
Details:Dr Vijayakumar and Dr Guarino hold this clinic once a year.  It is aimed at preparing children and their families for the transfer from paediatric to adult neurology services.
Contact Details:Enquiries about clinic appointments can be made via Dr Guarino's secretary on 01803 655812.
Useful information:
  • Directions and Parking

 

Adult Neuromuscular Clinics

Location:Mount Gould Hospital, Plymouth
Who will you see:Dr Elizabeth Househam, Consultant Neurologist
Clare Stayt, Neuromuscular Advisor
To be appointed, Specialist Neuromuscular Physiotherapist
Details:Dr Househam holds this clinic once a month.  Once a SWNODN Consultant Neurologist is appointed, more specialist neuromuscular clinics will be set up.
Contact Details:Enquiries about clinic appointments can be made via Dr Househam’s secretary on 01752 431266
Useful information:
  • Directions and Parking

 

Location:Mardon Neuro-rehab Centre, Exeter
Who will you see:There are currently no specialist neuromuscular clinics held in Exeter. Clinics will be re-established once a SWNODN Consultant Neurologist is in post.
Details:Patients can be referred to the Bristol Specialist Service or to the local Neurology Service at the Royal Devon & Exeter NHS Foundation Trust.
Contact Details:Enquiries about referring to the Bristol Specialist Service can be made via the SWNODN office in Bristol on 0117 41 41185 or 41184
Useful information:
  • Directions and Parking

 

Joint Specialty Clinics

Neuromuscular & Respiratory Clinics

Location:Derriford Hospital Plymouth
Who will you see:There are currently no specialist neuromuscular and respiratory clinics held in Plymouth. Clinics will be re-established once a SWNODN Consultant Neurologist is in post.
Details: 
Contact Details: 
Useful information:

Neuromuscular & Cardiology Clinics

Location:Derriford Hospital Plymouth
Who will you see:There are currently no specialist neuromuscular and cardiology clinics held in Plymouth. Clinics will be re-established once a SWNODN Consultant Neurologist is in post.
Details: 
Contact Details: 
Useful information:

Neuromuscular, Cardiology & Respiratory Clinics

Location:Derriford Hospital Plymouth
Who will you see:There are currently no specialist neuromuscular, cardiology and respiratory clinics held in Plymouth. Clinics will be re-established once a SWNODN Consultant Neurologist is in post.
Details: 
Contact Details: 
Useful information:

Neuromuscular & Genetics Clinics

Location:Derriford Hospital Plymouth
Who will you see:There are currently no specialist neuromuscular and genetic clinics held in Plymouth. Clinics will be re-established once a SWNODN Consultant Neurologist is in post.
Details: 
Contact Details: 
Useful information:

 

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Cornwall

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Please see information below on the neuromuscular clinics available in Cornwall.  For any specific information about neuromuscular clinic appointments, please contact the relevant hospital or speak to your Neuromuscular Advisor.

To find out about other support and resources in your area, we suggest you go to Muscular Dystrophy UK's support page which includes a search function to help find services/support in your area.  

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

Paediatric Neuromuscular Clinics

One of the Consultant Paediatric Neurologists attends a joint paediatric and respiratory clinic in Royal Cornwall Hospital, Truro.  Please see Joint Clinics section for further details.

Transition Clinics


Location:

Royal Cornwall Hospital, Truro

Who will you see:

Consultant Paediatric Neurologist
Consultant Neurologist (adult service)
Neuromuscular Advisor
Paediatric Neuromuscular Physiotherapist
Specialist Neuromuscular Physiotherapist
 

Details:

This clinic is held once a year.  It is aimed at preparing children and their families for the transfer from paediatric to adult neurology services.

Contact Details:

Enquiries about clinic appointments can be made via the Neuromuscular Co-ordinator on 01752 433366

Useful information:

Adult Neuromuscular Clinics


Location:

Royal Cornwall Hospital, Truro

Who will you see:

Consultant Neurologist
Neuromuscular Advisor
Specialist Neuromuscular Physiotherapist

Details:

This clinic is held twice a year on a Friday at Royal Cornwall Hospital, Truro.

Contact Details:

Enquiries about clinic appointments can be made via the Neuromuscular Co-ordinator on 01752 433366.

Useful information:

Joint Specialty Clinics

Paediatric Neuromuscular & Respiratory Clinics


Location:

Royal Cornwall Hospital, Truro

Who will you see:

Consultant Paediatric Neurologist
Paediatric Respiratory Consultant
Consultant Community Paediatrician
Adult Chest Physician (for all adolescent patients)
Paediatric Respiratory Nurse
Paediatric Neuromuscular Physiotherapist
Neuromuscular Advisor
(Cardiology reviews take place locally at a separate clinic)

Details:

This clinic is held over a two day period twice a year.

Contact Details:

Enquiries about clinic appointments can be made via the Respiratory Department secretary on 01872 254514.

Useful information:

 

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Bristol, North Somerset & South Gloucestershire (BNSSG)

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Please see information below on the neuromuscular clinics available if you live in the Bristol, North Somerset or South Gloucestershire areas.  For any specific information about neuromuscular clinic appointments, please contact the relevant hospital or speak to your Neuromuscular Advisor.  

To find out about other support and resources in your area, we suggest you go to Muscular Dystrophy UK's support page which includes a search function to help find services/support in your area.  

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

 

Paediatric Neuromuscular Clinics


Location:

Bristol Royal Hospital for Children

Who will you see:

Consultant Paediatric Neurologist
Neuromuscular Advisor 
Paediatric Neuromuscular Physiotherapist
Clinical Nurse Specialist

Details:

Weekly paediatric neuromuscular clinic every Monday afternoon.

Contact Details:

Enquiries about clinic appointments can be made via the neuromuscular secretary on 0117 342 0502.

Useful information:

Transition Clinics


Location:

Southmead Hospital Bristol

Who will you see:

Consultant Paediatric Neurologist
Consultant Neurologist
Neuromuscular Advisor
Paediatric Neuromuscular Physiotherapist
Specialist Neuromuscular Physiotherapist
Counselling Psychologist

Details:

This clinic is held every other month on the second Tuesday of the month.  It is aimed at preparing children and their families for the transfer from paediatric to adult neurology services.

Contact Details:

Enquiries about clinic appointments can be made via the secretary on 0117 4146688 or Southmead Outpatient Booking Team 0300 5550103

Useful information:

Adult Neuromuscular Clinics


Location:

Southmead Hospital Bristol

Who will you see:

Consultant Neurologist
Counselling Psychologist
Specialist Neuromuscular Physiotherapist
Neuromuscular Advisor

Details:

Dr Merrison holds a weekly neuromuscular clinic on a Thursday morning and also every other month on the second Tuesday afternoon of the month.  

Dr Wood-Allum holds neuromuscular clinics on the fourth Thursday of every month, and every other month holds a further clinic on the second Thursday of the month.

Contact Details:

Enquiries about clinic appointments can be made via the secretary on 0117 4146688 or Southmead Outpatient Booking Team 03005550103

Useful information:

Contact SWNODN

South West Neuromuscular Operational Delivery Network
Office 7, Gate 18, Level 1, Brunel Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

Telephone:  0117 4141184
or 0117 4141185

E-mail: swneuromuscularodn@nbt.nhs.uk

SWNODN - Bath & North East Somerset (BANES)

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Unfortunately, we do not currently hold neuromuscular clinics in the Bath and North East Somerset area. However, you would be in the catchment area for the Bristol clinics.

There may be other support and resources in the Bath and North East Somerset area that you can access. We suggest you go to Muscular Dystrophy UK's support page which includes a search function to help find services/support in your area. 

Please also remember that you can contact your Neuromuscular Advisor in between clinic appointments if you need any advice or support.

SWNODN Executive Board

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SWNODN Executive Board

The SWNODN Executive Board consists of doctors, allied healthcare professionals, Trust management, commissioners and patients, carers and family members who have an interest, or expertise, in the Network’s aims, development and outcomes. Provider organisations that deliver neuromuscular services within the SWNODN’s geographical area are responsible for the delivery of SWNODN recommendations, in partnership with the host organisation (North Bristol NHS Trust), and therefore also have representation on the Board. The Board operates to the The Governance Model for Operational Delivery Networks; South West Specialised Commissioning. 

The SWNODN Executive Board Membership is required to be a multi-disciplinary group; therefore its membership consists of a number of health care professionals specialising in respiratory, cardiology, genetics, clinical psychology and therapy services.  We also ensure that we have a patient voice at our Board meetings via a member of Muscular Dystrophy UK and patient, carer and family representatives. 

Our Network Board meets three times a year to review the Work Programme and agree actions to be taken forward by the Operational Management Team in line with the Board’s Terms of Reference. 

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