Neuromuscular Team

Online consultations: 

Due to Covid-19, hospitals have changed how adult patients are seen. Many of our patients are vulnerable and to protect them many consultations are now occurring via video.  We use a secure platform called Drdr for this which you can access on mobile, laptop or ipad but it does require chrome (and not internet explorer) for full functionality.

There is more information about this at this link: www.nuh.nhs.uk/online-video-consultations. You will be advised if you need to attend face-to-face.

 

The Neuromuscular Team at the QMC provides specialist care for children and adults living with Neuromuscular conditions in the East Midlands. We do not cover motor neurone disease.

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.

Useful information

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:

Clinic 2, B floor, West Block for adults. Childrens clinic east or south for paediatrics (it will be specified on your clinic letter.) B floor east or south block.

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

 

Useful contacts:

Nuhnt.md@nhs.netthis is a team email for both adult and paediatrics. Please bear in mind, this email address is not for urgent response.

Alyson.halliday@nuh.nhs.uk -Alyson Halliday is specialist PA for Dr Sedehizadeh . Please direct questions regarding medication queries/new prescriptions to this email.

Paedneuroadmin@nuh.nhs.uk - Zoe Kelly is a specialist PA for paediatric Neurology. Phone 0115 9249924 ext 83329

You can contact MD care advisor and physiotherapist via team email: Nuhnt.md@nhs.net

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

Meet the Team

Neurologist 

  • Dr Saam. Sedehizadeh works with adults
  • Dr Despoina Madenaki and Dr Krupa Torne see our paediatric patients.

Neuromuscular Care Advisor

  • Kirstie Spencer works with children and adults.

Neuromuscular Physiotherapists

  • Sarah Williamson-Advanced Practitioner Paediatric Physiotherapist for Muscular Dystrophy and associated conditions.
  • Paula Fenty –Advanced practitioner Physiotherapist for muscular dystrophy and associated conditions in adults.

Paediatric Clinical Nurse Specialist

  • Naomi LahiffA 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.

What we do

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.’

Physio Resources

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)

Feedback Neuromuscular Team

Please do complete feedback about our service as we are always wanting to improve. You can do this by dropping us an email, or completing the friends and family test. If doing the latter it helps if you mention muscular dystrophy so the feedback is directed to our service.