Neuromuscular Centre

What is a Neuromuscular condition?

This can be a disease which causes problems with:

• The nerves outside your brain and spinal cord
• The way the muscles are made up
• The communication between your nerves and muscles
• Some autoimmune conditions

There can be many different symptoms including; Sensory changes, pain, muscle weakness, mobility issues and fatigue. Some people may also experience problems with their heart and breathing.

Our centre has specialist team members who provide care and support for people with neuromuscular conditions including:

• Neurologist
• Neurorehabilitation specialists
• Clinical geneticists
• Neuromuscular physiotherapist
• Neuromuscular care advisor
• Neurophysiologists
• Neuropathologists
• Home ventilation service (paediatrics only)
• Cardiologist
• Clinical nurse specialist
• Lung function

  We also work jointly with the respiratory and cardiac teams as well as other medical specialists who may be involved in your care, such as orthotics and wheelchair services.

  As a regional specialist centre we work with GPs and community therapy teams to help patients manage their condition and symptoms outside of hospital.

Coming to see us? What to expect

Your height, weight and observations will be taken when attending our service. Please expect to have bloods taken at routine clinic appointments. When possible, we aim to time other investigations with your clinic appointment for your convenience..

Wear loose fitting and non-restrictive clothing if possible to enable you to be assessed by the physiotherapist.

Find us

Adult neuromuscular services have moved! You will now find us in the Leengate building at the Queen's Medical Centre (near Car Park 1 and just over the River Leen)

If you are in a wheelchair or you struggle with stairs or slopes, we have created a video of an accessible route from the tram bridge here: https://youtu.be/1uzyLiLHYeE

Neurology appointments, adult neuromusuclar physiotherapy appointments and orthotics are all also now based at the Leengate building.

Childrens clinic east or south for paediatrics (check your clinic letter for which one.) B floor east or south block.

Need more information on how to get here? Click here - Getting here | NUH

Useful contacts

If you would like to get in touch with the team for any enquiries

Contact the paediatric team at: nuhnt.nuh.paedneuroadmin1@nhs.net

Contact the adult team at:  nuhnt.md@nhs.net

Please direct questions regarding medication queries/new prescriptions to:

Paediatrics:
Zoe Kelly (specialist PA for paediatric Neurology)   Paedneuroadmin@nuh.nhs.uk Phone 0115 9249924 ext 83329

Adults: Alyson Halliday (specialist PA for Dr Sedehizadeh)  Alyson.halliday@nuh.nhs.uk 

Claudia Warner (PA for Dr Ambrose)  Claudia.Warner@nuh.nhs.uk 

Adult patients can also contact our MD care advisor by the team email: Nuhnt.md@nhs.net

Our service does not cover Motor Neurone Disease. To contact the MND team email: Erica.littleworth@nuh.nhs.uk or call 0115 9709142.

Adult Neurologists 

• 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. 

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 Physiotherapist

• 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 Neurologist

• Dr Krupa Torne works with our paediatric patients

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)

Group 1 : Newly diagnosed adults with a muscle wasting or weakening conditions - This group first session will be in April 2024

Group 2: Partners/Spouses of adults living with muscle wasting or weakening conditions - This groups first session will be in June 2024

Group 3: Parents group for dads of children living with muscle wasting or weakening conditions - This groups first session will be in September 2024

Group 4: Parents group for mums of children living with muscle wasting or weakening conditions - This groups first session will be in October 2024 https://www.musculardystrophyuk.org/get-support/someone-to-talk-to/virtual-therapeutic-support-groups

We provide a regional service for diagnosis and treatment of myasthenia gravis (MG), an autoimmune condition of the neuromuscular junction (the gap between the nerve and the muscle). More information on the condition can be found on the Myaware website.

As a regional centre we have access to established and new emerging therapies for MG including rituximab and Efgartigimod/Vyvgart. An MDT approach is adopted to determine the most appropriate treatment decisions for patients and we hope to establish a robust regional East Midlands MDT involving Leicester, Derby and Lincoln in the future.

We hope to be involved in MG clinical trials evaluating the potential benefit for drugs such as Cladribine and a new drug from the manufacturers of Vyvgart. These will be opening during 2024 for recruitment.

We have also been involved in other research projects including looking at side effects of medications used in myasthenia gravis (University of Manchester – now closed) and the national myasthenia gravis database (University of Oxford – open).

Thymectomies are also performed by the Thoracic surgeons at this centre as well.

Useful links: myaware

The Adult Neuromusuclar Team at NUH were awarded a Muscular Dystrophy UK Centre Pursuing Clinical Excellence Award in 2024. 

Charities supporting patients with muscle conditions

MDUK is a national charity supporting all types of muscle disease 

www.musculardystrophy

Treat NMD - 

https://treat-nmd.org/

SMA- 

www.smasupportuk.org

DMD –

www.actionduchenne.org  

www.duchenneuk.org

Mitochondrial diseases - 

www.thelilyfoundation.org.uk

IBM- 

www.myositis.org.uk

CMT- 

www.cmt.org.uk

RYR1 Foundation - 

www.ryr1.org/ccg

Patient Registries

Patient registries refer to databases that collect information on people affected by a specific disease. This is a way to ensure if a clinical trial is recruiting, eligible patients can be found and contacted quickly. 

You can search for a registry in the UK or globally on the TREAT-NMD website.

The UK CMT research data base has recently gone live and is open to children and adults with CMT.