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Care advisors

Contact information

Regional neuromuscular care advisors and specialist nurses provide practical and emotional support for families affected by muscular dystrophy and related neuromuscular conditions.

They also offer advice and information, supporting physical and emotional well being through regular clinics, and educating other health professionals.

 

Their training backgrounds include nursing, social care, physiotherapy and occupational therapy. They work with statutory service providers, education authorities and other professionals to advise, support and best meet the needs of people with muscular dystrophy and related neuromuscular conditions.

In order to have ongoing support from a regional care advisor, you will usually need to be referred by your GP to the clinic that the regional care advisor supports.

Derby

Alison Cami – Neuromuscular Care Advisor for paediatric and adult clients who attend University Hospitals of Derby and Burton.

Florence Nightingale Community Hospital, London Road, Derby, DE1 2QY

Dorset

Kathryn Docherty – Part time Neuromuscular Care Advisor for paediatric and adult clients.

Poole Hospital, Dorset, BH15 2JB

East of England

Liz Joyner -  Adult Neuromuscular Care Advisor covering Norfolk and Suffolk

Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ

Carol Wood – Paediatric and Adult Neuromuscular Care Advisor covering Cambridgeshire and Essex, based in Cambridge.

Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ

Andy Rose – Adult and paediatric Neuromuscular Care Advisor covering Hertfordshire, Bedfordshire and Peterborough.

Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ.

Katrina Cousins – Paediatric Specialist Nurse based at Addenbrooks hospital, Cambridge.

Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ.

Rachel Wilkinson - Adult and Paediatric Neuromuscular Care Advisor covering Norfolk and Suffolk

Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ.

Lancashire: Heywood, Middleton and Rochdale

Janice Fidler – Full time Neuromuscular Care Advisor for paediatric and adult clients.

Pennine Care NHS trust, Paediatric Physiotherapy Department, Callaghan House, Cross Street, Heywood, Lancashire, OL10 2DY.

Paula Sugden - Paediatric Neuromuscular Specialist Nurse Lancashire Teaching Hospitals NHS Foundation Trust

Royal Preston Hospital, Sharoe Green Lane, Fulwood, Preston, Lancs, PR2 9HT

Leicester

Yvonne Julien – Neuromuscular Care Advisor for Leicester, catering for both paediatric and adult care on a full time basis.

Leicester General Hospital, Neurology Outpatients, Gwendolen Road, Leicester LE5 4PW

Liverpool

Shirley Crosby - Neuromuscular Care Advisor for clients who attend Alder Hey & Walton Centre. Can provide for paediatric and adult patients on a full time basis.

Alison Sutch - Neuromuscular Care Advisor for clients who attend Alder Hey & Walton Centre

Anna Smith - Associate Neuromuscular Nurse Specialist for clients who attend Alder Hey

Alder Hey Children’s NHS Trust, East Prescot Road, Liverpool, L12 2AP

Alison Brown - Neuromuscular Care Advisor for clients who attend Alder Hey & Walton Centre

Vicki Hargreaves - Roald Dahl Neuromuscular Nurse Specialist for clients who attend Alder Hey & Walton Centre

London

Sian Craig, Victoria Crook and Natalie Smith – Paediatric Clinical Nurse Specialists at Great Ormond Street Hospital.

Shomona Begum – Paediatric Neuromuscular Nurse Specialist at Great Ormond Street Hospital.

Dubowitz Neuromuscular Service, Level 10 Old Nurses Home, Great Ormond Street Hospital for Children, Great Ormond Street, London WC1N 3JH

Emma Standing - Clinical Nurse Specialist Paediatric Neurology at St. Thomas’ Hospital.

Paediatric Neurosciences, 1st Floor, Staircase D, South Wing, St Thomas’ Hospital, Westminster Bridge Road, London SE1 7EH

Alana Mossop - Neuromuscular Care Advisor at St Georges Hospital covering London Boroughs of Wandsworth, Merton, Sutton, Croydon, Richmond and Kingston

Manchester

Janet Johnson - Full time Specialist Practitioner for Neuromuscular Conditions, based in Royal Manchester Children’s Hospital. Caters for paediatric and young people up to the age of 18.

Royal Manchester Children's Hospital 3rd Floor, Room C3.DV.162 Oxford Rd Manchester, M13 9WL

Nicola Earl – Full time Specialist Nurse for Neuromuscular Conditions, based in Royal Manchester Children’s Hospital. Caters for paediatric and young people up to the age of 18.

Royal Manchester Children’s Hospital 3rd Floor, Room C3.DV.162 Oxford Rd Manchester, M13 9WL

Phillip Kelly - Full time Neuromuscular Specialist Nurse & Care Advisor, based at Salford Royal NHS Foundation Trust. Supports adults with neuromuscular conditions

Muscle Diseases Unit, 3rd Floor, Neurology Offices, Humphrey Booth Building, Salford Royal NHS Foundation Trust, Stott Lane, Salford, M6 8HD

Newcastle

Gail Eglon - Northeast Neuromuscular Genetics Nurse Specialist, based in Newcastle, covers paediatric and adult patients on a full time basis.

MRC Centre for Neuromuscular Diseases at Newcastle, Institute of Genetic Medicine, International Centre for Life, Central Parkway, Newcastle upon Tyne, NE1 3BZ

Joe Mason - Specialist Neuromuscular Care Advisor for the North East, based in Newcastle, who covers paediatric and adult care Monday - Fridays.

The John Walton Neuromuscular Research Centre, International Centre for Life, Newcastle. NE1 3BZ

Northern Ireland

Isobel Douglas - Regional Neuromuscular Nurse Specialist for Northern Ireland, based in Belfast. She works full time over four days (Monday to Thursday) and covers paediatric and young adult care.

Royal Belfast Hospital for Sick Children, Neurology Office, 180 Falls Road, Belfast BT12 6BE

Sarah Mason – Regional Neuromuscular Clinical Nurse Specialist, based in Belfast. She works full time and covers adult services.

Neurosciences Department, Level 4 Outpatients, The Royal Hospitals, 274 Grosvenor Road, Belfast, BT12 6BA

•    E-mail: neuromuscularservieni@belfasttrust.hscni.net •    Tel: 02895043903

Nottingham

Kirstie Spencer – Muscular Dystrophy Care Advisor for Nottingham, covering paediatric and adult care on a full time basis.

Nottingham University Hospital NHS Trust, Queen’s Medical Centre Campus, Derby Road, Nottingham NG7 2UH.

Oxford

Heather Ryan – Regional Care Advisor based in Oxford, can cover appointments with adults only, available on Mondays, Wednesdays and Fridays.

Dept Of Clinical Neurology, Level 3, West Wing, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU (covers Oxford, Bucks, Berks & Northants.

Rebecca Moore – Regional Care Advisor based in Oxford seeing children only

Dept Of Clinical Neurology, Level 3, West Wing, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU (covers Oxford, Bucks, Berks & Northants.

Mary Quirke – Myasthenia Nurse Specialist also seeing Myotonic Patients.

John Radcliffe Hospital, West Wing, Level Three, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU

Preston

Kelly Parkinson - Care Advisor seeing children in Preston

Royal Preston Hospital, Sharoe Green Lane North, Fulwood, Preston, Lancashire, PR2 9HT

Scotland (East)

Gillian Mitchell – Neuromuscular Liaison Nurse. Covers paediatric and adult care. Available Monday to Wednesday 0800 - 1600.

Royal Hospital for Children and Young People, 50 Little France Crescent, Edinburgh Bioquarter EH16 4TJ.

  • Tel: 0131 312 0611(50611)

Scottish Muscle Network

Scotland (North)

Julie Burslem – Regional Paediatric Neuromuscular Physiotherapist and Care Advisor for the North of Scotland, based in Inverness. Working 13 hours a week.

Birnie Centre, Raigmore Hospital, Old Perth Road, Inverness, IV2 3UJ.

Scotland (West)

Wilma Stewart - Regional Care Advisor based in Glasgow, covering paediatric and adult care in West Scotland between Tuesday and Friday.

West of Scotland Genetics Service, Level 1 Laboratory Medicine Building, Queen Elizabeth University Hospital, 1345 Govan Road, Glasgow G51 4TF

Jen Dunne – Neuromuscular Clinical Nurse Specialist based in Glasgow, covering paediatric care in West Scotland on a full time basis.

Royal Hospital for Children, Office Block, Ground Floor, Zone 02/1, 1345 Govan Road, Glasgow, G51 4TF

Southampton

Suni Narayan – Neuromuscular Co-ordinator and Specialist Physiotherapist for adults, available 1 day a week at Southampton General Hospital.

Wessex Neurological Centre, Southampton General Hospital, Tremona Road, SO16 6YD

Alice Wilson - Neuromuscular Co-ordinator and Specialist Physiotherapist for adults, based at Southampton General Hospital.

Wessex Neurological Centre, Southampton General Hospital, Tremona Road, SO16 6YD

Shona Mackie - Paediatric Neurology Nurse Specialist, available on Tuesdays, Wednesdays and Thursdays and Southampton General Hospital.

Southampton General Hospital, Tremona Road, Southampton SO166YD

Sabrina Bushell - Paediatric Neuromuscular Nurse Specialist available on Tuesdays, Wednesdays, and Thursdays (08:00-16:00).

Southampton General Hospital, G4 Surgery, Research Office, Level G, SO16 6YD

South West

Elaine Burrows – Paediatric and Adult Neuromuscular Advisor, working Monday – Friday. Covers Bristol, Bath, Somerset, N.East Somerset, N. Somerset, Wiltshire, Swindon, S. Gloucestershire and Gloucestershire.

Room 7, Gate 18 Level 1, Brunel Building, Southmead Hospital Bristol, Southmead Road, Westbury-on-Trym, Bristol, BS10 5NP

Ann Morgan – Paediatric and Adult Neuromuscular Advisor covering Bristol, Bath, Somerset, N.East Somerset, N. Somerset, Wiltshire, Swindon and S. Gloucestershire and Gloucestershire.

Room 7, Gate 18 Level 1, Brunel Building, Southmead Hospital Bristol, Southmead Road, Westbury-on-Trym, Bristol, BS10 5NP

Clare Stayt – Paediatric and Adult Neuromuscular Advisor covering Devon.

Outpatient Department, Local Care Centre, Mount Gould Hospital, Plymouth, PL4 7PY

Tamara Higgins – Paediatric and Adult Neuromuscular Care Advisor covering Cornwall.

Outpatients Department, LCC Mount Gould Hospital, 200 Mount Gould Road, Plymouth PL4 7PY

Surrey

Pamela Appleton – Neuromuscular Care Advisor for adults and young adults of transition age in Surrey (also provides specialist advice and support to people who do not live in Surrey when they attend clinic to see their Neuromuscular Consultant at St George's Hospital).

Atkinson Morley Regional Neurosciences Centre, St George's Hospital, Tooting, London, SW17 0QT.

Wales

Rachel Salmon – Neuromuscular Specialist Nurse in South East Wales, working 30 hours and covering adult and paediatric services.

Neurorehabilitation Outpatient Department, University Hospital Llandough, Vale of Glamorgan, CF64 2XX

Alice Spilsbury – Adult Neuromuscular Care Advisor for South Wales, based in Swansea, available Wednesdays, Thursdays, and Fridays.

3A CAB Building, Morriston Hospital, Swansea, West Glamorgan, SA6 6NL.

Veronica Roberts – Paediatric and Adult Neuromuscular Care Advisor for North Wales.

West Midlands

Alice Roe – Lead Neuromuscular Clinical Specialist for adults at University Hospital, Birmingham.

Neuromuscular Team, Queen Elizabeth Hospital, Mindelsohn Way, Edgbaston, Birmingham, B14 2GW

Gurpreet Bharj – Neuromuscular Clinical Nurse Specialist for adults at University Hospital, Birmingham.

Neuromuscular Team, Queen Elizabeth Hospital, Mindelsohn Way, Edgbaston, Birmingham, B14 2GW

Susan Gallagher – Specialist Practitioner for Neuromuscular Conditions based in Birmingham, covering paediatric care.

Child Development Centre, Birmingham Heartlands Hospital, Bordesley Green East, Birmingham, B9 5SS

Jane O’Connor – Part time Regional Care Advisor for Transition based in Birmingham.

Child Development Centre, Birmingham Heartlands Hospital, Bordesley Green East, Birmingham, B9 5SS

Kerry Jones – Neuromuscular Care Advisor at the Robert Jones Agnes Hunt NHS Trust in Oswestry. Kerry supports services for children and adults.

Muscle Team, Torch Center, Robert Jones Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, Shropshire, SY10 7AG

Claire Bassie – Advanced Nurse Practitioner Neuromuscular Care for children and adults at the Robert Jones Agnes Hunt NHS Trust in Oswestry.

Muscle Team, Torch Center, Robert Jones Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, Shropshire, SY10 7AG

Yorkshire

Sue Manning – Based in Leeds, Sue is a part time Neuromuscular Care Advisor for paediatric and adult clients in East, North and West Yorkshire.

Leeds General Infirmary, Room 42, Paediatric Neurology, F Floor, Martin Wing, Leeds, LS1 3EX

Secretary: Iris Maher, 0113 3923113

Tracey Adjei – Full time Neuromuscular Care Advisor for adult clients, based in Hull.

Neurology Specialist Nurse Office, Wilson Building, Hull Royal Infirmary, Analaby Road, Hull HU3 2JZ

Sian Ball – Paediatric Neuromuscular Care Advisor for Sheffield, South Yorkshire, North Derbyshire & Lincolnshire, based in Sheffield. Working days are Monday - Friday.

Sheffield Children’s NHS Foundation Trust, Ryegate Children’s Centre, Tapton Crescent Road, Sheffield, S10 5DD

  • E-mail: sian.ball@nhs.net
  • Tel: 0114 271 7610
  • Paediatric Neuromuscular Service E-mail: sheffield.muscle@nhs.net

Pippa Jackson - Adult specialist Neuromuscular Care Advisor for South Yorkshire & Humber, based in Sheffield. Working days are Tuesday, Wednesday and Thursday's.

12 Claremont Crescent, Royal Hallamshire Hospital, Sheffield, S10 2TA