Neuromuscular Team

Neurologist 

• Dr Saam Sedehizadeh is a consultant Neurologist at Queen’s Medical Centre, Nottingham. He completed his higher specialist training in Neurology and was appointed consultant neurologist at Nottingham University Hospitals NHS Trust in 2017. He completed his PhD in the field of molecular genetics related to myotonic dystrophy at the University of Nottingham in 2019. He is has a specialist interest in inherited and acquired neuromuscular disorders.
• Dr Philip Ambrose is a Consultant Neurologist with a specialist interest in Peripheral Neuropathies, Myasthenia Gravis and antibody mediated neurological diseases. He runs the Nottingham Peripheral Nerve clinic, has set up the subcutaneous immunoglobulin service for inflammatory neuropathies and has ongoing involvement in clinical trials for new drugs. He performed his research in Myasthenia Gravis in Nottingham and Oxford working with the Oxford Autoimmune Neurology Group. He gained experience with Peripheral Neuropathies with Professor David Bennett and Professor Simon Rinaldi in Oxford. He is a member of the Association of British Neurologists and British Peripheral Nerve Society. 
• Dr Krupa Torne works with our paediatric patients.

Neuromuscular Care Advisor

• Kirstie Spencer works with adults 15 hours (Thursday and Friday). She has paricular interests in Adult neuromuscular disorders. Kirstie qualified as an Occupational Therapist in 1997  and has worked in health, social care and education supporting children and adults to achieve their best quality of life. She has worked as part of NUH since 2015.

  Email: nuhnt.md@nhs.net   Telephone: 07812 268749

Neuromuscular Physiotherapists

• Sarah Williamson-Advanced Practitioner Paediatric Physiotherapist (Tuesday-Friday) with special clinical interests in neuromuscular disorders. Sarah qualified at Nottingham University and University of Hertfordshire and has worked as a skilled therapist in acute and community settings. She has worked as part of NUH since 2019

           Email nuhnt.md@nhs.net     Telephone 0115 9709477

•  Paula Fenty-Advanced Practitioner Physiotherapist for   Adults.( Monday-Friday) with a clinical interest in neuromuscular disorders. Paula qualified as a physiotherpist in 1991 at Coventry and completed further study at Lincoln University (NIHR/HEEM intern). She has worked in a variety of specialist neurology and rehab settings both in the community and in gait analysis before coming to work at NUH in 2017.

            Email  nuhnt.md@nhs.net  Telephone 07812275596

Paediatric Clinical Nurse Specialist

• Naomi Lahiff- A clinical nurse specialist (CNS) offers a holistic nursing approach and is consistent point of contact for you, your family and any other health care professionals involved in your child’s care.

• Sarah Pitchford-A Clinical nurse specialist (CNS). Went to university at the University of Nottingham (BSc Child Nursing) and then Sheffield Hallam University (Specialist Community Public Health Nurse – School Nursing) Worked in the trust since 2016-2019, moved into the community from 2019-2022 and have since returned in 2023.

What is Neuromuscular Physiotherapy?

See Muscular Dystrophy UK’s physiotherapy page for more info.

Physiotherapy focuses on: 

• Specialist assessment and advice
• Treatment as indicated and clinically appropriate
• Assessment and referral for provision of orthotics (splints)
• Exercise programmes prescriptions
• Referral to local therapy services for treatment when indicated
• Optimising mobility and staying active
• Gaining or maintaining independence
• Assisting children through activity to develop gross motor skills
• Working with the wider multidisciplinary team in health social and education care
• Detailed monitoring, using clinical outcome measures, for novel treatments

What does a care advisor do?

The Neuromuscular Care Advisor (NMCA) will provide you with on-going advice and support about your neuromuscular condition. This may be particularly helpful when you are newly diagnosed or when something changes in your condition. This includes support for emotional-wellbeing, health and social care needs as well as being the link between the hospital and home/school/work.

What does a specialist nurse do?

Alongside the wider team CNS will help provide you with the knowledge and support needed to assist to self-manage your child’s condition. The CNS role is to offer advice and care on wide range of things including your child medication, emergency care plans, and symptom management as well as emotional and well-being support.’

Core Exercises for neuromuscular condition created by  UCL (many thanks to UCL for creating this video):

Pilates video in sitting for people with Neuromuscular conditions - YouTube (please check with your physiotherapist prior to starting these exercises)

NUH Video for passive stretches for the lower limb ;https://youtu.be/tPTIxhxU9nM

(please check with your physiotherapist prior to starting these exercises)