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.

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.

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)

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.